the Hart of the Matter

Upside Down

2010-01-21T15:28:00.000-08:00

Over the holidays our good friends, the Grahams, came for a visit! We always look forward to their visits, even though we only get to see them a couple times a year! This year was especially fun because we talked them into staying two nights, instead of just one! We manage to pack as much fun into three days and two nights as possible!

Our friendship with the Grahams started back on Summertree Court, the sweet little cul-de-sac I mention wistfully from time to time on this blog. Before we moved here, we lived on Summertree Court in Olathe for five years.

Oh how we loved that little street.

In almost every house there were babies and toddlers and stay at home mommies. The sidewalks overflowed with trikes, bikes, and sidewalk chalk. In the summertime we would set up little blow up pools and sprinklers and let the kids loose! In the winter we would walk over to each others houses, still in our pajamas, so the kids could play and the mommies could chat over coffee. Many mornings we would load up all our littles into their strollers and take long walks around the neighborhood. We had barbecues, block parties, play dates, and just so much fun. I think back on those years with such fond, happy memories. Eventually one by one, the families started to move away, and soon it was time for the Grahams to say good-bye.

What stinks about their move is that it happened just as our families were getting to know each other and hang out. We had lived just a few houses apart for a few years, but for whatever reason, just hadn't spent as much time with the Grahams as some of the other couples on the block. But Chris, Bethany, and little Huntler were the first to show up in our hospital room after Avery was born, and soon after Bethany and I were chatting away on the phone on a regular basis. Then, all too soon, it was time for them to leave. That last day we walked through their empty rooms together and reminisced about all the fun times spent there, and into the late evening we helped them load their things into a U-Haul truck and then watched through tear filled eyes as they drove down our street for the last time, headed for Arizona. . .

That was over three years ago now! Since then my BFF Bethany and I have spent more hours than I could ever count on the phone talking about everything imaginable. We moved here shortly after the Grahams moved out West and I think both of us were pretty lonely in our new homes at first. We filled many long, lonely afternoons with our chit-chat across all those miles about everything from party-planning and the latest celebrity gossip, to brain surgery and seizures.

Since that time and during their stays when they are back in Kansas our husbands and children have become great friends too! When they are here, we don't feel like we have to entertain them. They feel more like family than just friends. The kids play, (well, the husbands play too!) and Bethany and I talk for hours. This last trip, we even managed to sneak away from the house for a little while to do some quick after-Christmas shopping in the oh-so-exciting Flint Hills Mall (can you hear the sarcasm?)

As I've mentioned before Bethany is a talented photographer, but when we're hanging out she doesn't usually snap pictures, so as they were getting ready to head out the door at the end of this visit, I snapped a few quick pictures of Britton with the kiddos. Bethany's sweet little ones call him "Burt", although this time he was called "Britton" by Bethany's oldest. . . another sad reminder that they are growing up so fast. . . sigh.

Are they not some of the cutest little people you've ever seen? Huntler and Gentry wanted "Burt" to hold them upside down and me to take their pictures like that! Of course, Kaylen had to get in on the action!

I miss having my friend and her sweet family around. I miss pulling up extra chairs to our dinner table, the house extra full of little people politely requesting "choc-ate milk," and the daddies battling it away on the Wii until the wee hours of the morning!

I miss my friend.

And since the Grahams are thousands of miles away now, and our next visit isn't right around the corner, well, things have felt a little upside down around here!

Kaylee likes it!

2010-01-19T16:09:00.000-08:00

Am I the only one who has extremely pickey kiddos when it comes to mealtime? I'm guessing not. Avery- well let's not even go there. Miss Avery likes what she likes, and that's not much. And big sis, Kaylen is just about as bad. She is getting better at trying new foods, but not without considerable urging on our part. So when this cook book caught my eye, I was excited to give it a try.

Even though I've only had a chance to make a few of the yummy recipes inside, so far it has not dissappointed.

Tonight we tried Hot Ham and Cheese Turnovers. They were super easy and healthy too! They took less than thirty minutes from start to finish and include meat, dairy, vegetables, and grains! Woo hoo! Four food groups in one delish little sandwich!

Here's the recipe:

1 1/2 cups chopped cooked ham or turkey breast (I cheated and bought the pre-diced ham in a package)
1 cup small broccolli florets (I chopped ours up in pretty small pieces)
3/4 cups shredded cheddar cheese
1 10 oz. package of refrigerated pizza dough
1 tablespoon milk
(I also added one tbsp of light ranch dressing for extra flavor)

1. For filling, mix ham, broccoli, cheese, and ranch dressing in a medium bowl. Toss to mix.

2. Line a baking sheet with foil; lightly grease. Set aside.

3. On a lightly floured surface unroll pizza dough. Roll dough into a 12-inch square. Using a sharp knife (I used a pizza roller) cut into nine 4-inch squares. Spoon about 1/3 cup filling onto each square. Fold dough over filling. Press edges of dough together with fork to seal. Use the fork to prick holes in the top of each turnover to allow steam to escape. (Oops! I forgot to do this, but they turned out o.k.:) Place turnovers on baking sheet. Brush with milk. (Yeah, didn't do that either. . . )

4. Bake at 400 degrees for 13-15 minutes or until golden. Serve warm.

Nutrition facts per turnover:
141 calories
6 g fat
1 g fiber
8 g protein

I have been thinking a lot lately about how Britton's and my eating habits have such a huge impact on our girls. I want Kaylen (and Avery too. . .) to grow up eating a variety of foods, and eating to nourish her body, not because she's bored, sad, lonely or just in the mood for some McD's! I know that I need to change some of the bad eating habits I've formed in the last few stressful years, and when I think about how much I want for my girls to be healthy, I know that I need to set a better example.

So. The verdict is in!

Kaylee loved them! Broccoli and all. . .

Later this week we are going to try Smashed Potato Chicken Potpie! The recipe sounds scrumptious and the nutrition facts and daily values are great! Unlike the frozen store bought version of pot-pies! Have you ever read the label of one of those!? They should come with a warning! "Warning! Soooo not good for you!"

Here's to healthy eating in 2010!!

*Kaylen wants to be called "Kaylee"- go figure? We haven't decided if you spell that "Kaylee" or "Kayley"??

sNOw Thank You!

2010-01-16T07:15:00.000-08:00

I can't remember the last time we've had a winter with this much snow in Kansas! Kaylen started dreaming about and praying for a "White Christmas" as soon as she heard the song on the radio for the first time shortly after Thanksgiving. Then she added the not getting enough snow to her list of things she doesn't love about living here. For some reason in her memory we used to get "tons of snow" when we lived in Kansas City. I'm not sure if she remembers one or two decent snows that we got when she was little, but truthfully we haven't gotten this kind of snow in a long, long time!

We got over nine inches on Christmas Eve and Christmas Day, but it was hard to tell because in some places the drifts were over six foot high! Then the day after New Years we got a few more inches, and the first week of January week we added another four plus inches to our total! School was closed just two days after the kids went back after Christmas because of the bitter cold temperatures. The forcasted high for some of those days was ZERO! Needless to say it has been freezing!

Here is Kaylen testing the drifts in our backyard on Christmas Day:

Check out that snow drift! The fence behind the swingset is an eight foot privacy fence and the drift was almost all the way to the top!

Kaylen and Daddy tried to shovel our driveway so we could at least get our car out, but after an hour of shoveling Britton was exhausted and had only made it about five feet down the driveway!!

After our third snow I finally caved into Kaylen's pleading and bundled both girls up to go sledding. It was so funny to see Avery's reaction to the snow. She ran right over and stuck her hands in a drift and for a few (very brief) minutes she was fascinated!

But then she realized it was really, really cold and wet, and decided she didn't like it at. all. And it was all downhill from there.

We took the girls to a hill across the street, Avery cried and fussed the whole time, and on my second run down the hill I wiped out and BROKE my finger! It is finally feeling better, but I think my sledding days are officially over!

It's only mid-January but here's to hoping that our snow days are over until next year!

When my heart finds Christmas

2010-01-06T06:00:00.000-08:00

I realize that it is January, and for most, Christmas 2009 is already becoming a 'distant' memory for most. I read several of my Facebook friends' updates the day after Christmas announcing that they already had their Christmas tree down and all the decorations packed away. How sad that so many just want to "get Christmas over with" and move on. Well, here it is January 6th and my tree is still up, as are all the decorations. The majority of the unbelievable amounts of toys, games, and clothes that the girls received have been put away and closets have been overhauled and reorganized. The leftover Christmas cookies and goodies have been thrown out. My wrapping paper and bows are neatly boxed up for next year, but still, I am in no hurry to be done with Christmas.

For many reasons I like to let Christmas linger. It is absolutely my favorite time of the year. I love the magical feel of the holiday season. Where hearts seems lighter and merry and children seem about to bubble over with anticipation. I love Christmas shopping, Christmas carols, baking Christmas cookies, reading Christmas stories, building Christmas traditions, and teaching my girls the true meaning of Christmas.

Which is the second reason why I am in no hurry to pack Christmas away and be done with it. I was raised Catholic and for our family Christmas didn't end until Epiphany which is the day that the wise men first visited Jesus. (Which is also where the "twelve days" of Christmas originated from- the twelve days between Christmas and Epiphany- just a little Christmas trivia for you:) We celebrate the Epiphany Mass on January 6th or a Sunday close to it. My mom always left at least our nativity scene up until after Epiphany.

This Christmas our hearts and home overflowed with joy and we made so many precious memories that I don't want to forget. The rest of this post is an attempt to journal those memories so that when this Christmas does seem like a distant memory I can read my journal and help my heart find Christmas.

This Christmas was very different because of the great Christmas of 2009 Blizzard that rolled into town on Christmas Eve afternoon and changed travel plans for many people! This was the first Christmas in many, many years that we were not able to join my parents and my brother for Christmas Eve dinner. When I called my mom around two o'clock on Christmas Even afternoon to let her know that the roads were getting so bad that we didn't think we could make it over to their house and back safely, my heart just sank. As I said good-bye and "Merry Christmas" to my mom, a huge lump formed in my throat and my voice cracked. As soon as I hung up I sat on my bed and watched the snow blowing and swirling outside my window, though my tear filled eyes. And then the tears started to fall. . . I am a big girl, and I have my own family now, but I still love the traditions of my childhood, and couldn't imagine not spending Christmas with my parents and family.

But we did spend Christmas Eve alone and managed to have a wonderful time. Kaylen and I baked and decorated sugar cookies while listening to Christmas music. I let Kaylen do the majority of the decorating and so our cookies were heavily frosted, sugared and sprinkled. . . but Santa loved them! After dinner I let the girls open one present, their Christmas jammies. This year I chose flannel Nick and Nora jammies with vintage kitties playing with presents and ribbon! They were so adorable! We put Avery to bed and then went downstairs to watch A Christmas Story. Kaylen had never seen this movie and I'm not sure she truly loved it, but she did giggle at the leg lamp:)

On Christmas morning Kaylen was up at six, but we managed to hold her off for thirty minutes or so before we got up to open gifts. Avery slept until almost seven, and we started without her:) We thought she might sleep even later and Kaylen would have burst with excitement! Miss Avery doesn't really 'get' Christmas and we opened all her gifts for her. She was excited about the first present she opened and we probably could have just given her the one gift and she would have been happy!

Kaylen really made a hall this year! She got a new bike, a Wii, a daybed for her American Girl dolls and many, many other goodies! Avery was really excited about her Elmo microwave!

We spent Christmas day snuggled in as a family. We watched movies, played games on the Wii, and ate all the goodies we had stocked up on! We finally made it to my parents to celebrate with my brothers, newphew, and aunt the day after Christmas. My youngest niece called just as we were sitting down to lunch to announce that she was engaged!

The wintery scene outside our window as the sun came up Christmas morning, notice the snow in the bottom corner. . . love it!

When my heart finds this Christmas in my memory I will think of the sweet, sweet memories of being "snowed in" with my girls and their daddy. I will think of Kaylen's pure joy on Christmas morning when she saw all the goodies Santa tucked under the tree. I will think of the beautiful winter scene outside our window that kept us from celebrating Christmas in line with our traditions, but kept us home, celebrating Christmas together. And when my heart finds this Christmas, it will bring a smile to my face and joy to my heart!

Happy Birthday Avery!

2009-12-22T00:00:00.000-08:00

Unbelievably our "baby" girl turns four today! It is hard to fathom that four years have passed since we brought home our 'little' ten pound bundle of joy on Christmas Eve. So much has happened in those four years. We could have never known on that blessed day how much our entire lives would change, for the better, because of this precious little girl. Avery has fought countless battles, overcome so many hurdles, and beaten odds stacked high against her. Avery fills our home with joy and laughter, keeps us constantly on our toes, and makes our lives complete. I can't begin to explain to you the love that I feel for her. Of course I love both of my girls more than life itself. . . but I love each one very differently. The love I feel for Avery is a fierce, protective love. It is all encompassing. It takes my breath away. I cry just thinking about the fact that God found me, just an ordinary girl, worthy to the mommy of such an extraordinary little girl.

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I cry just thinking too, that my "baby" isn't a baby. She's four! She goes to school two half and three full days a week and continues to master one goal after another. While the drive to her school in the city is long, the progress Avery has made makes it worth each and every mile! She has all her teachers wrapped around her finger ;) and they celebrate her milestones right along with us! Just this last week she went potty on the big girl potty for the first time and had two dry days at school! Santa is going to put some big girl underwear in her stocking and we are going to give potty training a go! She is putting puzzles together, drinking from a big girl cup, matching pictures and objects, following simple directions, knows her nose, her head, her tummy and her toes. She can imitate a ton of letter sounds, and her favorite song to sing is the "alphabet sounds song." She is sleeping through the night in her big girl bed and helping me dress her in the morning. She can buckle (and unbuckle) her car seat. She dances and claps her hands to her favorite songs. She still loves "Moe Moe" (aka-Elmo), cows, and trains. She has discovered new love for Mickey Mouse Clubhouse, carrying shoes, kitchen utensils, and Bath and Body Works lotion bottles around the house, and flushing the toilet:) She has also fallen in love with daddy's tool bench and tools this year. She has learned so much in such a short amount of time and we are so thankful that she continues to be seizure free almost every single day!

This weekend we celebrated her birthday with her Grandmas and Grandpas. As some of you know, I do love to plan a party! I love to pick a theme and sometimes go a bit overboard with decorations, party favors, and games. I had a grand idea in my head to use a "gingerbread/candy" theme for this birthday, but with Avery's birthday so close to Christmas I didn't get to do as much as I wanted with the theme. But you know what? The day was absolutely perfect.

In every single way.

For one very important reason. Avery. It wasn't the decorations, it wasn't the invitations, it wasn't my famous wrapped silverware (which were all cute-mind you:) It was the joy of one little girl and everyone in the room felt it. Avery's happiness decorated our home, her hugs and snuggles were the perfect party favors, and her giggles, peek-a-boos, and patty-cakes provided the joyful entertainment.

You can't plan that, you can't purchase that, and they are the. most. important. things.

Avery was full of joy from the moment she woke up until she crashed at the end of the day. She was so excited to see her Grandmas and Grandpas and gave big hugs to everyone and kept saying "Hiiieee!" "Hiiieee", "Yay!" "Yay!", and "Oh boy!" all afternoon! She was just so happy and excited. It was almost as if she knew that it was her special day and she loved it!!

For the past three years Avery's birthday's have been bittersweet for me. Each year for a different reason, but bittersweet none the less. We celebrated Avery's first birthday under a cloud of dread as her first brain surgery was scheduled just a few days after her birthday. I can only admit out loud now, after all these years, that many nights before her first birthday I rocked her to sleep and sobbed as silent tears fell on her sleeping face. As I sat and rocked her to sleep I allowed myself to wonder if Avery's first birthday would be her only birthday. I had this horrible fear that she wouldn't make it through the surgeries and we wouldn't get to bring her home. No mommy should ever have to contemplate these things. But contemplate I did and it was heartbreaking.

Her second birthday was interrupted by a blizzard and a nasty seizure that pretty much ruined the evening, and her third birthday was more of the same. Seizures and sadness. We tried to celebrate. We "faked it" for Kaylen's sake, and the faking hurt more than doing nothing at all. Just thinking about all of those days that were supposed to be joyous occasions, that we just managed to survive, makes me sad.

But here we are a year later, and what a difference a year makes, This year, finally, Avery was able to enjoy her birthday! And so we celebrated! We celebrated the miracle that this little girl is. We celebrate all that she has accomplished and all that she will accomplish. We gave thanks to our good and gracious God, that has blessed us beyond measure with the precious gift of our Avery Elizabeth.

Happy Birthday sweet Avery girl! Mommy loves you with a perfect love that knows no limits. Mommy will love you forever and ever to the ends of the earth. You my love, are truly amazing, and I am so very blessed to be your mommy.

It's beginning to look a lot like

2009-12-20T16:00:00.000-08:00

Christmas! Welcome to our home! Christmas is less than a week away and I think everyone here in the Hart house is ready. Kaylen has been ready for a long, long time! November and December have been busy, busy months as usual, but we did manage to get our home decorated the weekend before Thanksgiving!

It's no secret that I absolutely LOVE Christmastime. I especially love decorating every square inch of our home in preparation for the big day! Each room kind of has its own theme and I have lots of favorite Christmas decorations, but our family room, where we spend the most time, is probably my favorite room in the house. This is where we put our Christmas tree. The tree we have is a little big for this room. We bought it for our first home in Olathe. The great room in that house was open to the second floor and the ceilings were over twenty feet tall! So we bought a ten foot tree and it still looked tiny. It looks a little bigger in this house, but it works. This is what greets you as you walk in our front door. . .

I love our "fake" fireplace and mantel. It really is the heart of our home. We sit by the fire many, many nights reading stories to the girls or just sipping a cup of hot cocoa. (O.k., let's be real, or sipping a beer- in Britton's case!:)

And our "big" Christmas tree. . .

Here's a shot of the tree with the rest of the living room lights off.

Our stocking are hung by the chimney with care!

And these little ones are ready for Santa to come down our chimney (well, o.k., through our front door:)

Wishing you a blessed Christmas and a Happy New Year!

And we have a winner. . .

2009-11-02T17:54:00.000-08:00

Well in true Hart fashion our weekend was full of drama and ups and downs. Sweet Kaylen missed out on her school's fall festival and all the fun that comes with Halloween because she came down with a nasty bug. She managed to put on her adorable pirate costume and trick-or-treat around our block, but she came home, checked out her candy and was asleep within fifteen minutes. She didn't go to school again today, but my trusty assistant Kaylen felt up to helping me draw a name for our little blog contest!

And the winner is. . . . .

Congratulations, Laura! It looks like you have gotten a fun head start on your Christmas shopping! Thanks for all of your comments, I hope you'll stop by again sometime:)

100th Post and a Give-away!

2009-10-28T11:23:00.000-07:00

Well, if you are reading this, you my friend, are one faithful reader of one very unfaithful blogger:) (Or you are here because my friend Bethany sent you my way:) I love this little blog o' mine, and I really do have good intentions of updating it more often, but I don't always find the time to spend updating it as much as I would like! Plus, sometimes it feels like there are only about five people reading it anyways, so why bother. Ya know?

Still, somehow I have manged to reach a very important milestone- my 100th post!

In honor of finally updating this little blog 100 times, I have a very special giveaway. . . .

You see, I have this dear friend. A dear, out of this world, amazingly talented friend. She's a party planner extraordinaire. A phenomenal photographer. An amazing listener (sometimes I barely let her get a word in edgewise during our hours long, kinda one sided, phone conversations - and I interrupt a lot. . . ) She has been there for me during some of the darkest, I mean really, really dark moments of my life. She's the one I call when it hurts so bad I think I will explode, and even though she's like halfway across the country and there's nothing she can say or do, her simple "I know." somehow makes it better. She's just too sweet for words. She deserves a post of her own and if I updated this blog oh, say, more than once every two or three weeks- I would totally dedicate an entire post to dear, sweet, Bethany. . . but for now. Let me just tell you that another one of her talents is bow-making. . . Look at this sweet cutie-pie and that adorable bow! I'll bet you know someone who would look really cute in a bow like this:)

You could win a bow like this one, just for leaving a comment at the end of this post:) (And no, commenting on my Facebook page doesn't count this time- sorry.) If you don't have a blogger account, you just comment anonymous and leave your name and email at the end. I will randomly draw a winner on Sunday afternoon- so you've got a while to get your comment in! I will then contact you and Bethany will send the bow your way. . . cause she's cool like that!

I would make a bunch of promises about updating more and being a better blogger, but I'm not sure that I could keep them. So here's your chance, leave me some comment love on this important blog-o-versary and win your cutie-pie this adorable headband and bow! (Adorable model-not included:)

Kaylen Rose

2009-10-20T05:30:00.000-07:00

When I dreamed of being a mommy, I could have never imagined the perfect gifts God would bless me with in my sweet girls. Miss Avery certainly gets her share of attention on this little blog, because well, putting it lightly she's always up to something isn't she? But there's another little girl in this house whose little life is certainly blog-worthy.

I've tried many times to put into words how I feel about my first born, my precious Kaylen Rose and I always fall short.

You see my friends, she's nothing short of amazing, this precious girl.

For one thing, she's a riot. She's always saying something that makes Britton and I laugh out loud. Some of her favorite phrases right now include, "Oh. Come. On. People!" "Are you kidding me?!" and "Remind me what's funny about this?" (Trust me, these sayings are so much funnier coming out of her little mouth:)

When we were in Chicago I was using the restroom and I guess I was taking longer than she thought was necessary. She kept asking me, in a loud, exaggerated whisper "Mommm! Are done yet?!" Then the automatically flushing toilet in my stall flushed and she exclaimed, "Well, its about time!" Except that it wasn't. My toilet flushed underneath me for no reason. When I told Kaylen this she said, "Uhhhh Mom? I think that's the toilet's way of saying. Get off. Your time's up!"

Oh, Kayley Rose.

You crack. me. up!

Kaylen is also a very determined little person. She works so hard at anything that she puts her mind to. She was recently asked to be a part of a junior competitive dance team. While dancing doesn't come naturally to her, she works so, so hard at it. At home she goes over and over the steps and pieces of routines that she is learning in her classes, and while she's still got a long ways to go, I'm so proud of her for her work ethic. She's the same way about school. It doesn't all come easy for her but she doesn't give up. She will write a word that she misses on our practice spelling tests at least twenty-five times without me telling her to, until she gets it right.

From the time Kaylen was very little she was a generous child. Even at two, she would offer you half of her favorite snack or the last bite of something that she clearly wanted to eat herself. She is constantly worrying about "the kids who don't have enough food to eat" or "don't have very may toys," and as a result has prompted us on many occasions to drop off donations to our local Salvation Army food kitchen, and to donate to Goodwill. She truly cares about other people and worries about them. We can't even begin to think of letting her watch the news, because if she hears the inevitable "bad news" or of a tragedy she will worry about the people involved for weeks. She worries especially about her friends. When her little neighbor friends squabble, as they often do, sometimes Kaylen comes home and cries because she can't "make everything better." She worries about one of her favorite classmates who "Doesn't have many friends mommy and I don't know why because I love her." She has such a soft heart. She hates spiders, but won't let me step on them. . . (well, unless they're really big mommy!)

Probably the thing that gets to me the most is this little girl's heart and love for her sissy. We've never told Kaylen that she needs to be "a good big sister" or to take care of Avery. She just does. She has a huge heart and is so, so very protective of her sissy. Once when Avery was little she reached up for the stove when it was on, and I automatically slapped her little hand away. Kaylen came running at me, already in tears, grabbed Avery and said "Don't ever hit my sissy! She doesn't understand!"

Last Sunday night after we tucked Kaylen in and had said goodnight, I was out in the living room picking up. I heard Kaylen kind of sniffling in her room, so I peeked my head back in and to check on her. She was lying in bed in the dark, sobbing softly into her pillow. I ran to her and asked her what on earth was wrong, and she managed to choke out, "I don't want Avery to have seizures anymore! I don't want her to have to go to the hospital. I don't want you to leave and go to California again." My heart ached for my girl as I reassured her that we were going to make things better again and I held her until she fell asleep. I could only hope that I wasn't making a promise I couldn't keep. Then I picked up the pieces of my broken heart and I left her room.

(Here is Kaylen holding Avery during the week that Avery went toxic on her meds and was miserable. She didn't want anyone to touch her, and Kaylen was the only one was able to comfort her.)

We will never know the bond between sweet Kaylen and her sister, its not like just any other sisterly bond. It goes much deeper.

I wish that I had the words to explain what an amazing precious person our Kaylen Rose is. Everything I want to say about her, seems like such a cliche, but they're all so true. She's one in a million. She's an angel on earth, the apple of my eye, and the love of my life.

Kaylen Rose, do you know what an amazing little girl you are? I have never met someone who cares about other people the way you do at seven years old. You love without holding back, you give until it hurts, and you are perfect. I can only begin to imagine the amazing things God has planned for you sweetheart. I thank Him everyday for choosing me to be your mommy and I love you more than you can possibly imagine. I will love you forever.

In spite of it all

2009-10-18T20:10:00.001-07:00

Certainly life has thrown our little family its fair share of curve balls. Just when we think the storm clouds have moved on and we hang up our umbrellas, it begins to rain. And in our family, when it rains, it usually pours.

When Avery started having seizures again a few weeks ago, I took it really hard. I cried everytime I thought about the seizures for a couple of days. I just so wanted them to be gone for good this time. I never wanted to have the conversations about the risks of brain surgery again. I didn't want to consider whether to put her on some new medication and weigh the long list of potential side effects against the chance that it might stop her seizures. I just didn't want to deal with any of it. At all. But what choice do we have?

What amazes me the most about having a child with a chronic debiliitating illness is that no matter how bad things get, no matter how much you feel like throwing in the towel. . . life goes on. There are meals to be cooked, beds to be made, and stories to be read. There are spelling words to study and dance classes and doctor's appointments. In spite of it all.

In spite of it all, our family finds reasons to be happy. Almost all the time. We smile more than we frown and we laugh more than we cry. We choose happiness.

In spite of it all we go to birthday parties.

We visit the pumpkin patch.

We plant a tree together and watch it grow.

We do homework. (With Avery's help:)

We play together.

And we love.

Some days I don't feel like I can take another second of the sadness, the worry, the stress and the hurt of watching Avery battle this disease. But then she fits a shape into a shape sorter and claps for herself, takes a drink out of a big girl cup and sets it back down on the table without spilling a drop, and smiles her big beautiful smile.

And we find a way to keep going.

In spite of it all.

Not the update I wanted to write. . .

2009-10-12T20:41:00.000-07:00

After nearly six months of seizure freedom, Avery has had a seizure almost every day for the past week and a half. At first we hoped it was just because she has been a little under the weather, but it seems that perhaps we are facing what we feared the most. Avery's long overdue break from seizures seems to be screeching to an abrupt halt. In just a few short weeks we would have been able to celebrate six months of no seizures and it hurts so badly that we can't that I hardly even know what to say about it.

I spent the better part of two hours sobbing on my sofa and punching pillows last night. I have known for awhile now that she was having a seizure here or there (for at least the last ten days) but it didn't really sink in until last night. So if you've talked to me in the last week or so and I said that things were fine- yeah, I was still enjoying the soft comfy blanket of denial. Watching Avery seize at the kitchen table last night felt in so many ways like the very first time she had a seizure in my arms some three and a half years ago now, except that there was no shock this time around to cushion the blow. I knew instantly deep in my heart back then, before I even knew about tuberous sclerosis, that nothing would ever be right again. And it isn't. Nothing can be right when you watch your child suffer and there's no way to sugar coat that or put a positive spin on it.

Except to say that if Miss Avery has taught us anything in the last four years, it is to never, ever count her out. She has shown us time and time again that she is up for the battle and refuses to give up or feel sorry for herself. She just keeps on keepin' on, and so we have no choice but to follow her lead. We try to focus on the positives and keep things as normal as possible for her and big sissy Kaylen, who is taking this latest setback particularly hard. We try to adjust to our new normal once again while questions about what to do next, fear, and despair threaten to overtake our hearts.

Perhaps, Miss Avery is just going through a growth spurt and we need to do some adjusting to her medication. Perhaps, she still has a bug and her seizure threshold is lowered. Or perhaps she is fighting a nasty beast of a disease that is relentless in its pursuit of her. Regardless, we have no choice but to trust that she will overcome this next hurdle and to pray for her safety and complete healing.

We ask that you join us in praying that these new seizures are just a temporary setback and soon Avery will be enjoying seizure free days again.

Rooftops

2009-08-31T21:42:00.000-07:00

For the past several days I have gone back and forth, back and forth between wanting to post an update, and not wanting to "jinx" things! Here we go again. Who would have ever thought that a crazy disease could challenge my faith in this way? (O.k., yeah, a disease like this would be a pretty obvious test for anyone’s faith!) But seriously, as I've said a million times before, I just don't believe that writing about the good brings on the bad. I don't "knock on wood" or cross my fingers. I pray.

And yet.

It seems like every time I bring you good news, I find myself following up a few days later with an urgent prayer request.

But tonight my desire to shout from the rooftops about the past few weeks has won out over my hesitancy to jinx us. So get behind me satan, because here I go!
This summer and past couple of weeks brought some amazing and exciting changes to the Hart family. First of all, we moved Avery into her big girl bed and guess what? The girl sleeps! All night. Every night. (O.k. so maybe I just knocked on the table next to me. Very softly. It hardly even counted as a knock, because you know, I wouldn't want to wake her up!:) We have even been reducing some of the sleeping medications that she takes because she seems to be so sleepy and tired in the mornings, even after sleeping all night. Notice that I said sleeping medication(s), as in plural. It really bugs me that my not even four year old takes multiple medications to help her sleep, but Avery without sleep is a very, very bad thing. We think that perhaps Little Miss Avery just wasn't "little" enough for her crib anymore and was waking herself up as she thrashed about in bed at night, because as soon as we made the switch to the big girl bed (full-size mattress) she slept, well, like a baby for the first time in her life.

Now she wakes up early in the morning (usually between 3:00 and 5:00) and comes out of her room and into ours. I actually love, love this new little routine. In the past when Avery would wake up, like every other hour, she would stand and cry in her crib until I would go and get her out. We would then sit in the rocking chair until she fell asleep again and I would attempt to lay her back down without waking her up. So the fact that she wakes up, climbs out of bed, walks down the hall and right up to my side of the bed and says "mama, mama" in her soft, sleepy little voice just melts my heart. And Daddy's too. I scoop her up and settle her in between us and she immediately scootches all the way over to Daddy's side of the bed and snuggles up to him as closely as she possibly can. Just another way this little girl has changed our lives in a big way. If it weren't for the past three plus years of total and utter sleep deprivation I would probably be complaining about this little visitor to our bed each morning, instead of rejoicing in it! While Kaylen has been known to fall asleep in our bed on occasion, or come snuggle up with us in the early morning hours, I have always been happy that she was such a good, independent (aka, in her own bed) sleeper. I think sleep and bedtime routines are so, so important for babies and children and so it has really been a struggle for us to work through these sleep issues with Avery. Letting her sleep the last few hours of the night cuddled in between us, is a dream come true! I can't tell you how many nights Britton and I have tried unsuccessfully to get her to sleep with us. To get her to sleep without us. To sleep anywhere! So yes, this has truly been an amazing blessing!

O.k. probably the most exciting change of all for our family is one that I've hinted at a few times over the last few updates. One that I've waited a long time to say. Our Avery girl is seizure free. For real. I feel confident enough that she won't have a seizure tomorrow or the next day or the day after that to say that out loud. (I might cross my fingers right now, if I could still type, and you know, if I did that. But I don't.) She did have a 45 second absence seizure (staring spell) the second day of school, but that is the only seizure we have seen in a long time. A long, long, time in Avery time. That morning we were in a big hurry and we forgot her seizure meds, so the brief absence seizure didn't surprise me. However the fact that she had a seizure soon after missing a dose tells us that her threshold for seizures is still not great. On the other hand, because of her Depakote levels being so high at the end of July- to the point of being toxic, we had to lower her dosages significantly. She is taking the least amount of medication for seizures that she has ever taken (just a low dose of Depakote) and still no seizures!

I can't even begin to describe to you what life without seizures is like, after having lived with them for so long (nearly two years of daily seizures.) How quickly we forget what those days were like. I really hoped that I would be able to update about this time that Avery was still not experiencing any seizures, because this would be exactly one month after her brain surgery that was scheduled in July. But that surgery never happened because the seizures stopped. Without surgery!! Praise God!

The other day when Avery's school asked for contact info for her neurologist I started to rattle off Cinci's phone number but couldn't. I realized that I no longer have Dr. Franz's phone number memorized. I had to look it up!! Do you realize what a startling revelation this was?! I don't have to call them a few times a week! I haven't called Dr. Franz's office in almost a month! I'll bet they miss hearing from me:)

And because Miss Avery is enjoying long stretches of seizure freedom we have made the giant step in enrolling her in a private treatment center/preschool for children with autism in the Kansas City area. Once again we are making the hour plus drive from our home to the city three times a week. It's a trek, but we truly believe that the intense therapy that Avery is receiving will be worth it in the long run. The difference this time around is that we know Avery will be able to attend consistently and I won't worry so much about her having a seizure on the way there or while she's at school. She goes for a full six and a half hour day and so far she seems to love her new school and is thriving there. (Although one day last week when I picked her up, her face lit up and she immediately turned to her teacher and said, "All done!! Uh Buh Bye!" Her bye-byes are priceless!)

We were so blessed to receive a grant from a foundation in our community that helps children with medical needs, to help with the tuition because we could have never, ever in a million years have afforded it on our own. We also could not manage the trip three times a week if it weren't for sweet friends and neighbors who watch over Kaylen before and after school while Avery and I are making our commute. They say it takes a village to raise a child, and in Avery and Kaylen's case- they've been blessed by a loving, caring village for sure! The funding and how to make the travel back and forth work are all things that we prayed about for a long time and are so grateful that God has answered these prayers abundantly!

So there you have it. We are busy, we are happy and holding onto our ever present hope that there are more good things to come for our sweet girl.

Care to join us on the rooftop!?

Flashback. . . Fast Forward Friday

2009-08-07T12:01:00.000-07:00

As I mentioned in my Way Back When-sday post, I thought that we had lost thousands of our digital pictures stored on our hard drive when our computer crashed last summer. I have had so much fun this summer going through those "lost" photos and remembering all the precious moments those photos captured. Birthday parties, baptisms, Christmases, and brain surgeries.

Cue needle scratch across record.

Did she just say precious memories and brain surgeries in the same breath?

Yes. Brain surgeries. And while they may not be happy memories exactly, they are very powerful memories of an extremely difficult time in our life. I guess they don't make me as sad as they possibly could in light of the amazing progress our sweet girl has made since those unbelievable hard days. These images just remind me of what an amazing little gal our Avery is. She is the toughest cookie I know!

Here is Miss Avery a few days after her first surgery. I can't believe how good she looks in these pictures, considering that during the five hour surgery doctors removed part of her skull, froze it, and placed nearly-one hundred electrodes directly on the surface of her brain to monitor the nearly thirty seizures a day she was enduring every day back then.

And here is Miss Avery a few days after her second brain surgery, which took place just a week after, the first surgery. Now here, she looks miserable, and she was. During this second surgery doctors removed a large portion of her left frontal lobe. Miracoulsy, Avery did not suffer any permanent loss of function and quickly regained the skills she lost during her long recovery.

She is a miracle isn't she?

Considering we almost lost our sweet girl after that second surgery to a blood clot in her femoral artery (from a central line that was placed during the surgery.) Avery's condition became critical when that blood clot in her groin decided to migrate to her lungs and become a pulmonary embolism. Yeah, those were tough days.

But when I look at these images, I don't feel sad. I am only reminded of what a fighter my sweet girl is. I am reminded of how blessed we are that she is sleeping soundly in her big girl bed and that she is full of life and spunkier than ever.

She's a miracle isn't she?

Fast Forward to today and here is Miss Avery now! (photo courtesty of Bethany) She is so beautiful, it takes my breath away and I am so very proud of how far she's come in the last three years.

Avery girl, you never fail to amaze mommy with your strength and courage. You refuse to let all the yuckyiness you have to deal with get you down. You just keep fighting and Mommy couldn't love you more. You are may hero and I am so proud of you baby girl! God surely has amazing plans for your little life!

Caught Red Handed!

2009-08-04T00:01:00.000-07:00

When I nominate myself for Mother of the Year next spring, I'm going to submit these photos with my entry as evidence of my superior parenting skills. . .

"How many fat grams are in these things?!!"

"Dang! That is not good!"

In my defense, she used a chair to get on the counter and help herself to these chips while I mixed her bedtime meds! The girl loves her chips!

Yup! Just call me mother of the year:)

Monday Morning Mommy Musings

2009-08-03T07:00:00.000-07:00

I'm not even sure what "musings" really means but, I wasn't sure what to title this post of random jumbled up thoughts. I do love a good alliteration every now and then, probably left over from my teaching days:) Our love for alliteration is one thing that MckMama and I have in common.

Unfortunately we have a few other things in common.

If you don't follow MckMama, then you've never met Stellan and the whole Happy Meal. They are an extraordinary family dealing with extraordinary circumstances- not unlike our own. Their youngest child, little Stellan, suffers from intractable SVT. I'm not sure I entirely understand his medical condition as well as I do Miss Avery's, but I think that because of electrical misfirings sometimes his little heart beats too fast and the medicines used to control his SVT don't always do the job alone. Last spring he had surgery to remove one of the extra pathways that causes his heart to beat in this abnormal rhythm. But the SVT came back. Hence the "intractable" part. His struggle reminds me of Avery's in so many ways and I can so relate to many of MckMama's updates from the hospital. Avery's seizures are caused by electrical misfiring in her brain and they aren't always controlled by medication. She too had surgery in attempt to stop these misfirings, but it was to remove the part of her brain (not her heart) that caused the seizures. The surgery worked for a time but the seizures came back.

Hence the "intractable part.

Baby Stellan has had a really rough couple of weeks. He has been in the hospital as doctors attempt to find a way to control his SVT. Miss Avery also had a horrible, awful, miserable week last week- fortunately we did not spend it in the hospital. As those of you who read my Facebook updates know, Avery struggled with major irritability for the better part of last week. We finally ended up at Children's Mercy to get a CT scan of her brain. Avery is followed by a team of specialists st Cincinnati Children's Hospital in Ohio. We live eleven hours from Cinci, but Avery's neurologist, Dr. Franz, is one of the best in the country and he is an expert on Avery's disorder, tuberous sclerosis complex. Dr. Franz was concerned with Avery's change in behavior and irritability and wanted a CT scan to rule out any changes with the tumors in the ventricles of her brain. Unfortunately the scan did show that one of Avery's ventricles is mildly enlarged. We aren't sure why yet, and because it wasn't dangerously enlarged we won't have to do anything about it right a way. She will have an MRI in three months to look at the change in the size of her ventricle and hopefully it will be no bigger than it is now!

We think most of Avery's misery last week was because the levels of her anti-seizure medication, Depakote, in her bloodstream became too high. In fact her levels were DOUBLE the therapeutic range! Medicine toxicity can cause all of the symptoms Avery was experiencing and when we lowered the dose, gradually, we started to see small improvements in Miss Avery. Avery had an amazing evening last night! We went for a long drive (which lately she has asked for constantly!) and she laughed and giggled in the back seat the entire time. She's such a sweetheart.

Avery is irritable a lot of the time- even when her medication levels aren't completely out of whack. We have tried everything we could possibly think of to distract her and entertain her. She also has autism, and so at three and half years old, she doesn't enjoy all the normal things a preschooler would enjoy. In fact, she doesn't enjoy much when she's having a bad day (or a bad week as the case may be).

Britton first had the idea that Avery might like to go for bike rides in a bike trailer or baby seat quite awhile ago. However we were both afraid that if we went out and bought new bikes and a bike seat, we would find out too late that Avery wanted nothing to do with it. Then we would have the bikes but not be able to ride unless Avery wasn't with us. Thanks to our sweet neighbors we were able to borrow two nice bicycles to test Britton's theory and guess what? Avery loved it!!

Here are Avery and Daddy getting ready to head out for a ride.

Avery laughs the entire time and yells "Go! Go!" as Britton pedals her around the neighborhood. It was a brilliant idea on Daddy's part:) She seems to love the feel of the wind in her face and the bumpiness of being strapped to the back of Daddy's big bike! Plus, it's great exercise for us! I'm so excited that we've found something that all four of us can do together as a family!

*And yes, we make her wear a helmet! We just strap it on at the very last minute because it's the one thing she does not enjoy about taking a bike ride. To say the least.

Well, that's probably enough rambling for one day! Kaylen is visiting her Grandparents in Salina this week, so it's just the three of us! We will miss her, but we know that she will be enjoying her time with Grandma and Grandpa as they spoil her rotten!

Happy Monday!

Scooter Gang

2009-08-01T05:36:00.000-07:00

From the time Kaylen was a toddler, she has always been blessed with bunches of neighborhood playmates. For the first five years of her life we lived on Summertree Court in Olathe. There were no less than a dozen little ones Kaylen's age and younger at any given time. Then slowly but surely, the other families started to move away. On to their bigger and better second homes:) By the time that we put our house up for sale, there was really only one little guy left that Kaylen played with. He was nearly two years younger than Kaylen, and they didn't have much in common, but it was better than having no one at all!

So when we moved here, I prayed and prayed for our new neighborhood to be filled once again with lots of little kids close in age to Kaylen. God answered this prayer abundantly! In just three houses on our street (well really the cul de sac that our house backs up to) there are six little ones and five of them are girls!! From the first few nights in our new home, Kaylen has been glued to the hips of these sweet girls.

Kaylen is rarely ever without a friend to play with! They bounce from house to house and during the summer sometimes spend entire days together. Last night I had to go outside at 9:30 to drag Kaylen in and I found them like this, having scooter races on the driveway. I absolutely love, love that Kaylen is growing up in a community where she is surrounded by playmates. That they are able to run and play, ride bikes and scooters, jump on the trampoline, and swing on the swing set well into the night and they are safe. They are safe and happy and carefree and getting to grow up together.

What a blessing for our sweet girl and her friends!

Thank You Danielle!

2009-07-30T21:27:00.000-07:00

Here it is! Our new look! I really enjoyed working with Danielle, from the Design Girl, on this blog design. Oh, who am I kidding! I didn't "work" I just asked questions and she did all the work! I love it and am so inspired to get back in the swing of blogging more often! Thanks again, Danielle!

Way Back When-sday!

2009-07-29T07:02:00.000-07:00

Our family computer bit the dust last summer during a lightening storm and with it, hundreds and hundreds of our digital pictures!! Or so we thought. We didn't even bother to try to get it fixed until this spring, when a co-worker of Britton's mentioned that he had recently had the same thing happen and was able to recover all the lost data and pictures. So Britton took our computer in and ta-da!! All our pictures right there where we left them! I was so happy I almost cried!

I have been looking back through file after file of "old" pictures and I am so happy that they weren't lost forever. There are so many precious memories stored on our hard drive, and we are working quickly to get them all saved over to disks so that we never lose them again!

So for today's walk down memory lane. . .

From the moment that Kaylen found out that our new baby would be a girl, she started dreaming (out loud) about all the fun things that they would do together! First item on her agenda? Play dress-up! I explained to her that it might be a little while before her baby sister was old enough to play dress-up, but Kaylen was patient. One day when Avery was about seven or eight months old I was folding laundry and Kaylen and Avery were playing in her room. Pretty soon, Kaylen called to me, "Mommy, mommy! Come see! Come see!"

And this is what I found!

Oh. My. Gosh. Were they ever this little? They are so precious it makes me want to cry!

And I'll let you in on a little secret. . . They are so precious it makes me want another one. . .

Shhhhh!

Yikes! July?!!

2009-07-27T21:45:00.000-07:00

I can hardly believe that its already the end of July and in a few short weeks school will be starting again! It has been a busy, busy summer and a blog-free one too! I can't believe how I've neglected this poor, abandonded blog!

Who knew that a little thing like this blog o' mine could cause me so much guilt. Each day I stop by here and see my last post from (GASP) April and I feel so guilty. Guilty for not updating more often and guiltly for ignoring my blog!! I know this is silly because there are probably only two other people in the world reading this, but still. . . I don't like to start something and not keep up with it, so here goes. . .

So what have the Harts been up to since I last posted?

Well what a better time than July than to talk about what happened in May I say! In May, Kaylen Rose turned seven!! We celebrated by throwing a rock-star themed sleep over and it was a hit! I ordered these rockin' invitations from Designs by Georgia off of Etsy! If you need a fun invitation and a quick turnaround time, Georgia is your gal!

We decorated our basement with tons of balloons, sparkly stars, and streamers. To create the effect of a "dance party" we even had a friend of ours who is a DJ bring over some fancy "strobe" lights that flashed in bright colors to the beat of the music. With the lights turned down and the music cranked up it was the perfect setting for the little divas to get their groove on!

As you can see in the picture above, it was kind of hard to get good pictures of the rock stars as they were "dancing" - aka, chasing each other around our living room:) But you can see the fun "disco" lights!

This is the only shot I got of all the girls together, as the night was winding down and they stopped for a minute to watch High School Musical 3 in their jammies. This party was so much fun, it really deserves a post all of its own. . . we'll see;)

After Kaylen's birthday weekend was Dance Recital Week. This was Kaylen's second year in jazz and ballet here in Emporia and gearing up for recitals is always a big deal! Kaylen had dress rehersals EVERY night for a week and then perfromed on two different nights! In the end it was worth it and the dances turned out very cute!

Here are Kaylen and two of her dance buddies at rehearsals.

After school was out, we took Kaylen to Chicago to visit the American Girl Store. What a fun trip! Yup, that trip certainly deserves its own post!

Here are Kaylen and I eating lunch with her doll, Mia, in the American Girl Cafe! What an amazing place to visit! More on that later. . .

We also took Kaylen to Branson at the end of June for a quick weekend getaway. I didn't even take pictures on the trip. We've been there so many times, and we were having so much fun, I just didn't snap away away like I normally do!

While in Branson we took Kaylen to White Water- a water park with tons of wild and crazy slides. I had no idea Kaylen was such a daredevil! Just last summer she wanted nothing to do with the water slide at our local pool, but she didn't say no to a single ride at White Water!!! She even went down Kaluni Falls, the picture you see below! It was a little scary, even for me, let alone Kaylen, who was just barely tall enough to ride it!!

At the end of June our best friends visited from Arizona! We always enjoy having them stop by, even if their visits always feel too short. You can see the amazing pictures my friend Bethany took of our family while she was in town by clicking here.

Another fun part of summer for us is hanging out on the lake on our friends' boat. We enjoy boating so much that we are thinking about getting a boat of our own for next summer!! Kaylen had a blast tubing with daddy and our friend Garrett!

Avery even got to go tubing for the first time! I don't know how much you can see here, but in between Daddy's feet is her little face. You can't hear it on the video, but she was laughing and clapping the whole time! She loved it! I guess we have two daredevils in our family! For the most part she loves being in the boat and hanging out in the water!

Well, that pretty much sums up May and June! Wow! Birthday parties, dance recitals, vacationing, lake trips, and visits from friends! I guess I didn't realize how busy we really were this summer! See. . . no wonder I haven't found the time to blog:)

I really am going to start blogging at least a little more often than every three months because I'm getting a blog makeover soon!! I can't wait to reveal my new look!

Hollywood

2009-04-12T19:30:00.000-07:00

Last month we traveled to Los Angeles for Avery to undergo a surgical evaluation at UCLA medical center. After many months of researching different surgical centers we made the decision to travel to UCLA to meet Dr. Gary Mathern, a highly respected neurosurgeon.

It was a long and difficult trip for many reasons. I detail more of Avery's medical stuff here , but we are hopeful that the surgical team at UCLA may be able to pinpoint the brain tumor that is causing Avery's seizures and remove it.

After we were discharged from the hospital we took in some of the sights and took Avery to the ocean for the first time We just happened to have a professional photographer with us to capture these precious memories. My dear friend and her sweet family made the six plus hour trek from Arizona to hang out with us after Avery was discharged. We had a blast with our friends in Hollywood and learned that Miss Avery loves the ocean. She laughed until tears ran down her face. The entire ordeal was worth that precious sound!

Pottery Barn Schmottery Barn

2009-03-14T10:37:00.000-07:00

When I saw this bedding in the pottery barn kids catalog I instantly fell in love. . . with the bedding that is, not so much with the price. I have purchased a select few items from pbk, but usually when it goes on sale. I showed my mom this adorable ensemble and mentioned that I thought it would look precious in Avery's room because her walls are already this shade of blue she said, "Well, let's make it."

Right.

What she really meant was, "I'll make it for you." There's no "let us" in doing something that requires sewing because "us" doesn't sew. My mom is a talented seamstress and I have no idea how to sew a button back on a shirt.

A couple of days before Christmas she and my dad dropped off armloads of goodies to put under the tree for the girls and when I saw several large packages and bags for Avery, I knew exactly what it was. . . I don't know if my mom is reading this, but I'll have to admit that later that afternoon, I pulled back the tissue paper ever-so-slightly and took a peek at the quilt inside and as my friend Bethany likes to say, I might have "squealed out loud" with delight.

My mom's version of the quilt and the accessories is sooooo much cuter, more detailed and yummier than the Pottery Barn version. She went with brighter, bolder colors, and included details I never would have thought of! Check it out:

The theme of this bedding is owls, which has special meaning for our family. Yes, they are all the rage these days, but we've loved them much longer. My mom has been collecting "owls" for most of her life, and they were her thing long before they became 'popular.' So of course, my mom had Miss Avery (who is basically non-verbal) saying "Whoo Whoo" before she could say some of her most basic words. If you ask Avery, "What does a horse say?" or "What does the doggie say?" she doesn't have a clue, but ask her what an owl says. . . .

My mom turned 78 this week! I think it is amazing that someone at her "wise old age":) can still sew like this! She has had cataract surgery and I know this has to be harder than it was for her a decade ago.

And these little cuties from the pbk catalog. . .

Grandma's version: Too stinkin' cute!

I saw these sheets in the store and the colors are perfect for our version of the bedding so I'm hoping they'll go on sale soon, otherwise I may just have to splurge!

I've always wanted to take pictures of the different rooms in my house for sharing. I'm snoopy that way. I love to see the insides of some of my long distance friends, family, and even 'blogging friends' and don't mine sharing my favorites, but this is why I don't!! I'm a horrible photographer. These pictures just don't do Miss Avery's room justice (or my mom's handiwork) but you get the gist of it:) Avery and I spend so much time in her room. I absolutely love it, and it just might be my favorite room in the house for so many reasons. It is peaceful and playful all at once. I do some of my best 'thinking' and praying in Avery's room while rocking her to sleep at night.

Grandma, (mom) if you're reading this. You are amazing! I love this and all of the other keepsakes you've made for us. Kaylen loves her Mia wardrobe and is so proud to show it off to her friends. They will become heirlooms and mean so much more to us than anything you could buy in a store (or off the Internet.) She just learned how to do that too! Amazing I tell ya'! The next thing you know I'll have her on Facebook:)

We love you!

Tiny Caskets

2009-03-12T04:30:00.000-07:00

I didn’t think I had anything else to say about our current situation because the last few weeks have been an absolute whirlwind. I don’t think that I can possibly explain all that has taken place in such a short time in this small space but if you will bear with me while I vent for just a couple more paragraphs then I will try!

This ridiculous disease has changed absolutely everything about our lives. Tuberous Sclerosis has now officially ruined two of my favorite t.v. shows. Yes. That’s right. A genetic disorder has robbed me of two hours of pure viewing entertainment.

I am a huge Grey’s Anatomy fan! Before Avery got sick I watched all the drama unfold, sometimes on the edge of my seat, and breathed a huge sigh of relief as the credits rolled and everything ended neat and tidy. The tumor was removed. Ta da! You’re cured! The perfect donor match for an organ transplant is found at the last second and within an hour the patient is lying in bed surrounded by family giving thanks for their great fortune. Now I watch and just yell at the screen. “Are you serious?” I mean really? How dumb do they think their audiences are? On a recent episode Dr. McDreamy performed an open craniotomy (exactly like Avery had during the week of her grid placement) and his patient, in an attempt to kill himself, beat his open skull against the back of his metal bed repeatedly. A few minutes later he is carrying on a conversation with the beautiful nurse who has taken pity on him. Right. Because that’s what you do after you bash your exposed brain against a metal bed.

Ummm hmmm.

Let me just clue you in. When a doctor is performing a nephrectomy (removing someone’s kidney) in the OR they don’t turn to the doctor next to them and say “Oh, no! We have to do a nephrectomy. We have to take out his kidney.” They don’t have to explain to their colleague what a nephrectomy is because, hello!, if I know what a neprhectomy is than so does the doctor standing in the OR! Or at least I sure hope so!

I digress. This episode was so far out there, but one part really struck a nerve with me. One of the characters was giving another doctor a hard time for being callused and not having empathy for her patients, in this case children. She launched into a dramatic monologue about the fact that she not only has empathy for the children and their families, and especially the patients she loses, but it bothers her so much that she dreams of tiny caskets.

I too, have nightmares of a tiny casket.

(Bear with me. I’m not being morbid. This is my reality and I’m just being “brutally honest” as so many of you have commented about my writing.)

I’ve had the same dream several times and it never fails to leave me sick to my stomach and curled up on the floor next to Avery’s crib. In my dream I’m standing at the back of the church I’ve gone to since I was born. I’m standing at the end of the altar looking toward the front of the church and I know that there is a tiny casket at the end of that altar. The altar my parents carried me down to baptize me. The same altar I would years later carry Kaylen and then Avery down to be baptized. The altar I walked down to receive my first communion and the altar that my father walked me down the day of my wedding. In this dream I’m walking down the altar toward the tiny casket and I see people I’ve known my whole life filling the pews. I fight my way up out of this dream every time, willing myself to wake up. I force myself up out of the depths of my sleep into consciousness before I reach the end of the altar. I never want to reach the end of that altar, because in my dream I know who rests in that tiny casket.

This is just another of the many ways this horrendous disease has changed our lives. Even our sleep isn’t a place to escape from it. *And please don’t email me suggesting therapy. My dear friends, been there done that. The one time I spoke with a therapist he suggested I embrace the philosophy “Carpe Diem” In other words, “Seize the Day!” He actually said that after I told him Avery’s story. Did he not hear a word I had just said? “Carpe Diem?” Seize the day? Seriously. I busted out laughing right there on the leather couch! Seize the Day! Are you kidding me!? We’ve been seizing every dang day for two years. I can only imagine what he wrote in my chart:) This is my therapy:)

My other favorite show is the Bachelor. I know, I know. It’s a little trashy but it’s also very funny. So if you’re followed along, this season’s bachelor was the much loved Jason. Towards the middle of the show he had to choose between two girls that he supposedly cared about equally. On one date in particular he took two girls and at the end of the "date" he had to decide which girl to send packin’ and which girl to ‘keep.’ Really. It sounds much worse than it is. But in his obvious distress he made the comment, “It was the hardest decision I’ve ever had to make.”

And now I’m out two good shows.

The hardest decision he’s ever had to make.

If only. Right now Britton and I are trying to decide if we should allow surgeons to cut into our precious girl’s brain for the third time to remove most of what remains of the left side of her brain. Or perhaps we should we continue switching medicines on her like musical chairs hoping that one of them will eventually stop the seizures? Or perhaps we should do nothing and just accept that they will always be a part of her life, all the while, hoping and praying that one of them won’t take her life. I’ve told many friends that having a child with a devastating disease is like living my worst nightmare. That’s not exactly accurate is it? Losing a child to a devastating disease is certainly my biggest fear. I worry every day that I will lose my Avery Elizabeth to a seizure. It happens my friends. The monsters under our beds are very real. We live with them day in and day out. So I’m not being morbid in the slightest when I tell you that I am so afraid of losing my baby girl.

How is anyone supposed to make these kinds of decisions? We have prayed, and weighed the options, and researched, and prayed some more and on Sunday we will leave for LA for Avery to undergo her second surgical evaluation at UCLA Medical Center. Depending on the results of that evaluation, Avery will be having her third brain surgery as soon as early May, but more likely it will be closer to June. My brain can’t even begin to contemplate these sentences I just wrote.

We are also faced with the unthinkable decision of temporarily dividing our family in order to get Avery closer to the therapy she so desperately needs. Through an amazing connection we made a few weeks ago, we have found a center where Avery could receive the recommended forty hours a week of ABA therapy. However, it is in Kansas City and we are here. The jobs that we love are here, our home and the community that we love is here, Kaylen is here and Britton is here. Our family is close by. But the therapy Avery needs isn’t here. We can’t just pack up and move. So do we divide and conquer? Do Avery and I leave Britton and Kaylen during the week so that sweet girl can get the help we believe in our hearts she needs? How can I leave two of the most important people in my life? How do I choose between my girls?

So Jason. Buddy. If choosing which beautiful girl to date is the hardest decision you will ever have to make, consider yourself blessed.

So there you have it. You’ve laughed, you’ve cried. I’m back. Thank you so much for your kind words and messages after my last not-so-uplifting update (on Avery's CarePage). I know from the emails and private messages I received that many of you were concerned that I am suffering a “crisis of faith.” We are very tired, but our faith is the only thing that keeps us going. If I’ve learned anything in the last three years, it’s that it’s o.k. to get angry with God sometimes. He is bigger than our anger and he can handle it. When your children are mad at you because you won’t give them something they really want, do you turn your backs on them or write them off? Of course not. I delight in the Lord and know, despite what I feel and think sometimes, that he will never leave or forsake us. We know that God is God and we are not and this is enough. I think sometimes we’ve been taught to tiptoe around God, but we believe and scripture tells us it’s o.k. to come boldly before the throne.

Thank you for continuing to do just that for Avery and our entire family.

"Let us, therefore, come boldly unto the throne of grace, that we may obtain mercy, and find grace to help in time of need" Hebrews 4:16.

Lisa needs. . .

2009-03-10T04:30:00.000-07:00

(I borrowed this picture from another blog, but now I can't find it to give her credit?

Seriously that's what I need! Chocolate!)

This is too funny. It's actually a version of a note going around on Facebook (Which I am totally addicted to and is one of the main reasons why I neglect this little blog. Did I say that outloud?) Anyways, you go to Google and enter your name plus the word "needs" all in quotes (so "Lisa needs") It is pretty funny to see what comes up in your search. It's even funnier when done in a bar with good friends and an iPhone after a few drinks. . . Ehh hemm, Amy? Jennifer? What do you need?

Heres what you do: Go to Google.com and do a search. Type in your first name and the word needs after it in quotes. Then copy the top ten things Google says you "need." O.k. here goes:

1.) Lisa needs braces. (I had braces when I was 15, but some of my teeth did turn back, so I guess this is kinda true?)
2.) Lisa needs to get a life! (Hmmmm. I'm pretty happy with the one I've got thanks!)
3.) Lisa needs a nap. (Amen!)

4.) Lisa needs a home ASAP. (Nope, I'm safe and sound in my beautiful home!)

5.) Lisa needs your help! (O.k.?)

6.) Lisa needs help with her vertical blinds. (Those darn vertical blinds. . . )

7.) Lisa needs a bigger grin. (Hence the braces.)

8.) Lisa needs braces. (Holy cow. This was like every other google hit! I must seriously have bad teeth?)

9.) Lisa needs a new concealer. (Yes! Yes I do! I have dark circles and age spots! This one is true!)

10.) Lisa needs to be committed (and the tag line underneath: "Okay all I'm going to say is that girl is very unstable. She seriously needs her head checked. " ) Too, too funny! True?

Soooo, Bethany, , Rachel, and all my Facebook bffs, what do you need? (Some of you need to get your own blog- That's what you need. Umm hmm. You know who you are:)

Good Intentions

2009-03-08T23:59:00.000-07:00

When I first started this blog, I had every intention of updating it often. Then life happened. In a good way. I don't find as many hours in the day this spring as I did last year at this time to pop in and upload pictures and tell stories. I'm hoping that someday things will settle down (Right.) and I will be able to be a better blogger! For now, you can send me to blogger time out. . .

Since I last updated, things have settled down for Miss Avery. We think that our last trip to the ER was due to her anti-seizure medication levels being off. I could write a book about the woes of weaning and adding seizure medications. Hate em'! She has had a lot of good days in the last three weeks which is such a blessing. Right now sweet Avery girl is my shadow. I mean literally. She is pretty much within twelve inches of me nearly all of her waking hours- and sometimes her sleeping hours too! She just doesn't want to let me out of her sight and I'm o.k. with that, it just makes things complicated. Things like laundry, cooking, cleaning and blogging can become tricky with a 35 pound toddler attached to your hip! Sometimes I can get away with talking on the phone for long periods of time because I can continue to play or do whatever it is Miss Avery insists on while holding the phone between my shoulder and ear:)

Kaylen has been busy with school, dance, Girl Scouts (and selling cookies!), birthday parties and losing teeth (a total of four now!) She is growing up so fast, with her seventh (gasp!) birthday party fast approaching! We are playing around with ideas for a theme right now, but I think we are going for a cross between a camp-out and a diva slumber party. We'll see how much time I find in the next month or so to pull something together! Britton's schedule is still crazy with winter sports just ending and spring sports beginning. Many weeks the girls don't see him for several days in a row because he leaves before they are awake and gets home long after their bedtime . Two weeks ago, I spent a week in D.C., advocating for increased funding for TSC research, have been planning our trip to California for Avery's surgical evaluation at UCLA over spring break, and am trying to stay on top of assignments for my Master's class, besides working part time and keeping up with two very busy little girls. I don't mind being busy, I just wish sometimes I had a few less items on my to-do list:) So for now I will leave you with a few random pics of the main reasons why I don't find much time to blog these days! Excuses, excuses. I know:)

Pray for Avery

2009-02-13T13:58:00.000-08:00

Our sweet girl is really in need of a break right now. Yesterday was a long, horrible day. She woke up from her nap absolutely hysterical and was inconsolable for several hours. She vomited a few times and then just passed out (as in fainted) and I panicked.

We spent the night in Children's Mercy getting lab work and a CT scan but the doctor's were not able to explain what caused this particular event or tell us what to do to prevent it from happening again. Welcome to life with TSC.

It took seven sticks to get this IV. Our sweet girl is bruised and looks like a pin cushion this morning.

After a head CT scan to rule out changes with her tumors Avery was so out of it from the sedation meds that she kinda forgot to breathe. She struggled to keep her O2 sats up and needed blow by oxygen for a while.

We are home now, with few answers and many questions. Thank you for checking in on our sweet girl and saying a prayer or two for us!

Hurting

2009-02-08T07:54:00.000-08:00

My heart aches for this family today.

I have been following Cora's short battle with cancer since Bethany posted about it on her blog. For some reason this precious angel's sweet face and her family's obvious love for her really got under my skin. It just hit a little too close to home even though we are not battling cancer.

Please pray for them and hug your babies a little tighter today. Every day with them is a blessing, not a guarantee.

Who knew?

2009-01-25T19:17:00.000-08:00

Who knew that autism could be so beautiful? When you look at this precious face do you see the stereotypical disabled, rocking back and forth, spinning, grunting child with autism? Probably not. When I look at this picture I see perfection. I see love. I see my life.

Would you believe that the little girl in this picture spends most of her days crying, screaming, and trying to injure herself in anyway she possibly can. Most of the time she beats her head against the floor (preferably hardwood or tile) the hat hides the bruises well. Sometimes she resorts to slapping herself against the ears, pulling her hair, or biting her own wrist.

Why?

Why sweet girl?

It breaks my heart and most days I want to just lie down next to her and bang my own head against the floor in frustration. Sometimes I think if we could fix just one thing on Avery's list of challenges this would be the first thing. Just when I think it can't get any worse it does and I wonder if God is still listening to our pleas for mercy. . .

Who knew autism could be so beautiful?

keep it Simple

2009-01-13T22:14:00.000-08:00

I've been thinking a lot about the whole New Year's resolution thing. It's almost time for people to start falling off the wagon isn't it? I know I've missed two days of planned exercising and I didn't even 'resolve' to lose weight. I'd like to be healthier and shed a few pounds, but am I resolved to do it?

Instead I've decided to do something a little different this year. I plan to keep it simple. Every morning as I stand at my kitchen sink mixing meds and chocolate milk (not together) and running through my mental to-do list, I stare at this little black sign. It's been there since shortly after we moved in. I'm not sure why I bought it or even what "Simplify" signified to me at the time. Probably I just liked how it looked.

But that's what I am going to do this year.

Simplify.

No complicated resolutions or plans. Just to simply enjoy this life, as complicated as it may be. I plan to simply be happy. To simply be.

Sounds simple doesn't it? I'll let you know how it goes.

O Christmas Tree, O Christmas tree

2008-12-29T16:00:00.000-08:00

you really drive me CrAzY!!

I love decorating for Christmas. Really, really love it. But this year, our tree has almost put me over the edge! I'm sorry to say that I won't be leaving it up until nearly Valentine's Day as usual. When I first put it up back around Thanksgiving, I was stringing lights and got almost all the way to the top (I start at the bottom) when every last strand went out. I messed with it for over an hour before I finally found the problem.

Over the course of the last few weeks, little sections of lights have been going out. One, by one. Forcing me to trace my way back to the source and try to somehow get the strand off without destroying the entire tree. . . And don't even get me started about Avery and her "un-decorating" techniques!

So as much as I love this beautiful symbol of Christmas. . . .

she's comin' down in the morning!

The birthday that almost wasn't!

2008-12-24T03:30:00.000-08:00

I'm not usually a last minute, throw-it-together, anything goes kind of gal when it comes to planning birthday parties for my girls. O.k. Well, maybe some things do get done at the last minute, but this is my blog so. . .

Really, though. I usually spend several months planning a theme, looking for the perfect party favors, making decorations. So I have a little bit of mommy guilt that I didn't go "all out" for Miss Avery's third birthday. For one, her birthday is so stinkin' close to Christmas, that it makes it kind of hard. For another, (excuse in case you're keeping track here), Avery was scheduled to have oral surgery on her birthday this year, so I was assuming that she wouldn't really feel up for a party.

But at the last minute we decided we couldn't bring ourselves to put Avery through such a yucky ordeal on her birthday and so we canceled the surgery. Which left us with a birthday girl, and no party.

So what's a mommy and her super six year old side kick to do? We went into party planning fast forward mode, whipped up some cupcakes- chocolate, Avery's favorite, picked up some balloons and party hats, and wa-la! Instant party. And you know what? It was probably one of the most enjoyable birthday's I've spent with my girls. There was no pressure, no stress. Just a beautiful birthday girl, delicious cake, and lots of fun.

Kaylen proudly displaying the gift she hand made for Avery (and wrapped herself:) In case you couldn't tell, it's a jingle bell bracelet, and Avery loves it!

The best part about having a three year old, who is really more of a one year old developmentally is that you get to do the 'smash cake in your face for the first time' every year! At first Avery wasn't sure what we wanted her to do with the cupcake and kept looking at us, like, "Are you serious? You want me to just dig in?"

Smart girl. She wasn't going to pass up the opportunity to eat an entire chocolate cupcake by herself, so she got right to work!

Thank God for cupcakes!

Happy Birthday precious Avery! We love you sooooo much!

the key to my Hart

2008-12-14T13:24:00.000-08:00

Kaylen was scrolling through our blog the other day making sure that there were equal amounts of pictures of her and Avery. There aren't, but she pointed out something else. There are no pictures of Daddy, and nothing written about him. I saw this version of a "tag" on another blog and decided to borrow the idea.

1. Full Name: Britton Nathaniel

2. How long have we been married: 8 and 1/2 years!

3. How long did we date: on and off for EIGHT years!!!! (Four straight years before we were married.) We were together on and off my junior year of high school. We never "dated" my senior year, but couldn't really stay apart either. . . Then we were weren't together my freshman and sophomore years at K-State (Britton was still in high school), but when I was home on the weekends he usually found an excuse to stop by:) Then a few weeks before Britton moved to Manhattan to start school at K-State he "stopped by" to tell me that he had changed his mind, that he wasn't going to college after all! I remember my reply to this ludicrous line of thinking exactly. "Well that's a bummer because now we'll never be together." Long story short, he went. We're together.

4. Who eats the sweets: Well that's a no-brainer. Me. All me.

5. Who said I love you first: Britton. Over the phone on Christmas morning when he was 15-in 1992!!! Do you think he really meant it?

6. Who's Taller: Britton is 6'1" and I'm 5'5" (in heels:)

7.Who sings better: I'm not sure either of us sing that great, but I guess we would both say me?

8. Who is smarter: It depends on what we're talking about. I'm smart in all things reading, writing, and book-related. Britton is a math, number crunching, kind of guy. He knows about cars and sports and guy stuff. I'm more knowledgeable about babies, laundry, and medical stuff.

9. Who does the laundry: Ahhh. Me. Sadly.

10. Who pays the bills: Britton.

11. Who sleeps on the right side of the bed: Britton

12. Who mows the lawn: Britton (I've mowed it twice. In Eight years:)

13. Who cooks dinner: Britton again. Come on people, where are the "Who changes diapers? Who gets up with the baby in the middle of the night? Who knows each child's birth weight, current weight, shoe size, favorite food". . . kinds of questions?

14. Who drives: We both do, but usually Britton

15. Who admits they are wrong: Neither of us, but I am pretty stubborn, so I can sometimes get him to admit he was wrong. (He usually is. :)

16. Who asked who out first. Britton asked me out and I turned him down. Twice. Then he finally manipulated his way into a double date with my best friend and the guy she was wanting to date at the time. (He was two years younger than me. It was pretty uncool at the time!) The rest is history.

17. Who wears the pants: Both of us.

18. What does he do that surprises you? Gets emotional when he talks about Avery.

19. What is your favorite feature on him? His eyes.

20. What is your favorite quality he has? He is the most hands-on, loving and patient father I've ever seen. He love for his girls is so obvious and it melts my heart.

21. Does he have a nickname for you? Leigh (or Lee?)

22.What is his favorite food? Too easy. Spiral cut ham and cheesy potato casserole.

23.What is his favorite sport? To coach? Track. To watch? Football

24.What is your favorite thing to do as a couple? Ha. Since Avery's birth and diagnosis we've had very little "couple time," but we have so many plans and dreams. We love to travel together. Right now those are just short trips to the Ozarks, or to the lake, or for an overnight in Kansas City (like this New Year's Eve!), but we hope to be lying on a beach somewhere on our tenth anniversary next year. We plan to walk hand in hand down the street in Italy, named after my Grandpa's family and kiss under the Eiffel tower. Goofy I know. But those are the shared dreams and plans that get us through the tough times.

25. Does he have any hidden talents? He is an amazingly talented woodworker. He builds beautiful furniture. (Not sure if that's "hidden"?)

26. What do you admire most about him? His work ethic, his dedication to giving anything he commits to 100%, his faith.

27. What is his favorite color? Green or Black? I don't honestly know.

28. How did he propose? It wasn't that romantic or anything. We were on a trip to Branson together and he planned to propose on the patio of restaurant that sits up high on a bluff overlooking the lake, but then our reservations were pushed back, and I talked him into going somewhere else to eat because I was starving, so he just got down on one knee in our hotel room and very nervously (which is funny because we'd been together eight years at that point!) asked me to marry him. I said yes, and the rest is history!

There is so much more to my husband than just these 28 questions. I wish I had the words to explain what he means to me. When I try to explain I fall short, only coming up with the old cliches "the love of my life", "my best friend," and his favorite "the key to my 'Hart'':)

The past two years have been the most difficult years of our lives and they have taken a huge toll on our marriage. For obvious reasons my life and my energy has been focused on keeping Avery alive and making her well. I know that has changed who I am and Britton is married to a different 'Leigh' than he fell in love with. But he is different too, and the most important thing is we are "soul mates" for lack of a better cliche. Regardless of how time and circumstance changes us, our love is the same. I can't imagine my life without him. I can't imagine having gone through the struggles and heartbreak of Avery's illness and surgeries without him. He "carries" me in so many ways. When I am upset or worried, he is the first person I run to. I will never forget the day of Avery's first brain surgery. When the time came to finally hand Avery over to the anesthesiologist, as the weight of her little body left my arms, my knees buckled and I started to go down. But I never hit the ground because Britton was right there to catch me as I fell.

I could go on and on about the one I love forever, but I know eventually the "sappiness" will get to ya! Suffice it to say that the "Hart of the Matter" is that I am truly blessed to be married to my best friend!

Happy Harts

2008-12-05T20:00:00.000-08:00

Here's the sneak peak of our fall family pictures that I promised. Our sweet friend and neighbor, Angie, took us out on a warm day a couple of weekends ago to take our family photos. She did an amazing job! She captured some great shots of us that afternoon. This is one of my favorites. . .

Unfortunately, Britton and I couldn't seem to keep our eyes open, so in each and every one of the pictures of all four of us, one or the other of us looks goofy! The girls did fine for the most part. Avery of course, is impossible to "pose," but Angie did take some great pictures of both girls that day, that I love!

Like this one. . .

And this one. . . Avery being Avery. Everywhere we go she has to stoop down and "touch" the ground, or the sidewalk, or the tile. . . . Yeah. It takes us awhile to get from point a to b.

We did a re-take session the next afternoon, when the sun was beginning to set and it was much easier to keep from squinting. Britton's dad snapped some quick pictures of us in the same location and a couple of those turned out fine. Again, it was nearly impossible to get Avery to look at the camera, but I do love the innocent look on her face in this shot, and the rest of us look how I picture us.

I'm so not loving myself in these pictures. They are proof in 'black and white' that I have really packed on the pounds in the last year since we moved here. So I'm jump starting the infamous "New Year's Resolution" early, which will certainly be hard to do around the holidays! But, I can't let Britton out-do me. He has been getting up at five in the morning several days a week and working out! It is already starting to show in his face and his 'tummy':) so I better get moving! Going back to work part time means that I have to dress nicely a few days a week, and that's when reality set in for me. I have a closet full of size fours and sixes that I wore just two years ago- none of them fit now! Yikes!

Getting old is such a bummer!

Precious

2008-12-03T12:02:00.000-08:00

I have been dying to share her with you, so without further ado, here she is! My first great-niece, baby Emily. Is she not breathtaking or am I biased as usual? Look at that hair!

So how is someone as young as myself a Great-Aunt? Well, its a long story, but I was Aunt-Lisa from the day I was born, as my brother's first child, Wendy, was born just two weeks before me. Have you ever seen Father of the Bride part II? Our story is similar, minus Steve Martin running back and forth between delivery rooms on the day of our births. I don't think my dad or my brother were allowed in either delivery room. . . but I digress. So suffice it to say, I was a late in life surprise (VeRy late, my mom was 45!!) for my parents. Wendy and I share a special bond. We have been through some tough times together and celebrated many special days side by side. She was my Maid of Honor and I was her Matron of Honor. She was the first person to call me the night of Avery's diagnosis and ask "Are you o.k.?" -the question that everyone seemed to be afraid to hear the answer to. We were in the same grade all through school, although they separated us into different classes. I suppose it would have been odd to have an aunt and her niece in the same class?

And that's how on November 14th, I became the proud Great-Aunt to this sweet baby girl. I can't wait to meet her!! I have spent a lot of time trying to figure out who she looks the most like, my niece Wendy, or her handsome husband? For now I'm going to have to say that she looks an awful lot like her daddy, although I see hints of some Croucher in her:)

Here she is, just two weeks old! Doesn't she look like such a little lady?! Perhaps being born at almost nine pounds had soemthing to do with that! So, so sweet.

Love you sweet girl - and your mommy and daddy too!

She takes my breath away!

2008-11-23T20:20:00.001-08:00

I have a love hate relationship with photography. I love looking at beautiful pictures, I hate being the subject of a photograph. I love capturing a memory in a priceless photo, I hate being stuck behind a camera. I am very blessed that I have many dear friends who are talented photographers. Many of the pictures that I post on this blog are taken by someone other than me, because while I want to remember special events such as birthdays and holidays, and the simple joys of playing in the park or a beautiful sunset, there’s something about the pressure of capturing the “perfect picture” that, for me, takes away from just enjoying the moment. I know this isn’t the case for many people. Taking pictures doesn’t stress them out, and they can just snap away, all the while ‘living in the moment.’ I have never been able to master this talent, and so, fortunately I usually have someone close by to capture it all “on film.” (Does anyone actually use film anymore?)

So today, when I slipped this hat and scarf on Avery to see if they would fit, I was instantly faced with a dilemma. She looked sooooo stinkin’ cute in her little outfit, I felt the need to take a picture. But it was also nearly sixty degrees and sunny outside this afternoon, a rare treat for the end of November in Kansas. I wanted to go out back with Avery and spend the rest of our afternoon swinging, crunching in our leaf piles before they blow away, and just soaking in such a perfect day. I decided to grab the camera, “just in case,” and I am so glad I did.

Unlike my friends who “get” their cameras, I know nothing about composition, or lighting, or the settings on my camera. I simply point and shoot and hope for the best. My dear friend, Bethany, is probably cringing as she reads this. . . The best thing about this reckless photography is that I have no expectations and so I am rarely disappointed, but more often, pleasantly surprised when I find that I have actually captured the essence of why I was taking the picture in the first place.

These pictures of Avery are priceless to me because they are are true Avery- they capture her ornery spirit, her feistiness and her sweet, gentle, life-loving little soul.

And that is why I love them.

Not because of their quality. Not because of their composition.

Because of the sweet little girl in each of these pictures.

So here you go. As my photographer friends would say they are SOTC (that's straight out of the camera), feel free dear Photoshop gurus to edit away. (I would be more than happy to email you an original. Hint, hint.) I was too eager to share them to take time and edit.

I’ll warn you, there are a ton! I got a little carried away, so if you are short on time be sure and check out the last few. . . they are my favorites!

Look very closely. What's wrong with this picture? See that sweet piggie toe sticking out? A hat and scarf and bare feet? Yeah. It wasn't really hat weather today. . .

I absolutely love this one. It's the calm before the storm. It's sweet innocence. It's the beginning of the end because the fact that Avery is wearing a hat has not escaped her, she's just been too busy playing until now to take care of business.

Hah! Success! What is so cute about this hat?

Oh, wait. What's this? Why on earth do I have this goofy thing tied around my neck?

Just a little bit farther.

Oh! Almost.

Aggghhhhh! Seriously. Get this thing of of me! And enough with the pictures already mom!

And finally, my absolute favorite picture from today. This is just so Avery. When I look at this picture I see the orneriness in her eyes, and the sweetness that is Avery in her little half smile.

O.k. I seriously have to stop there! Are you on Avery overload? There are more where these came from my friends, so my intention is to add a few more, plus a sneak peak of our family photo shoot, later this week!

So out of curiousity, which one is your favorite?

Can I Have this Dance?

2008-11-04T17:47:00.000-08:00

Today I bought this. . .

Today I bought this CD because we took Kaylen to see High School Musical 3 last weekend and she loved it!! Today I bought this because I knew that when Kaylen saw it sitting next to her CD player after school she would squeal and run to me saying, "Thank you, thank you, thank you. . . " Today I bought this because I love to surprise my first born and spoil her a little bit, because I can. Today I bought this because even though Christmas music was playing in the background as I tossed it in my cart, it's a long time until Dec. 25th.

It had nothing to do with me not being able to get this song (out of a teeny-bopper movie no less) out of my head.

Really.

Flashback Friday-Happy Halloween!!

2008-10-31T07:42:00.000-07:00

Excitement fills the air this Halloween morning! Kaylen is so excited about Halloween this year that she is about to burst!! I don't remember her being this excited last year, but maybe I've just forgotten. Last year Kaylen wore an adorable witch costume hand made by Grandma, and Avery went as her lucky black cat! (A costume I threw together at the last minute, literally, because Avery had outgrown the Ladybug costume she was supposed to wear!)

When Kaylen first saw Avery in "costume" last year, she exclaimed, "I'm being a cat next year!!" I assumed she would forget, but when we started talking about costumes this fall, sure enough, a black cat was still on the list. Well. . . right behind Hannah Montanna and Sharpay (from High School Musical), I nixed those ideas, and we came up with an adorable girly black cat costume on our own! (A little more involved than Avery's drawn on whiskers and felt ears glued to a headband at 5:00 p.m. on Halloween night!)

Here they are last year!

This afternoon I get to help out with Kaylen's First Grade fall party which I always look forward to! I have Poltergeist Pins (two liter bottles made to look like ghosts for bowling), Halloween Twister, Witches Brew and Cauldron Stew Relay Race (picking up "ingredients" i.e., construction paper cut outs of bats, witches, ghosts, etc. with a straw and blowing them into a witches cauldron), Spider Ring Toss, and Ring around the Pumpkin planned. If we have extra time I also whipped up some Halloween Bingo cards, and have a really fun guessing game called Boo Who? planned. We should be busy, busy, busy, and I know it will be a blast!

As a teacher, I used to dread "party days" because the kids show up in the morning wound for sound, and you have to try to keep them focused until the party at the end of the day. As a mom, I love these days!

Stay tuned for party pics, and this year's costumes!

Have fun tonight and BE SAFE!

Priceless. . .

2008-10-26T19:45:00.001-07:00

An inflatable swimming pool from the clearance aisle at Walmart . . . $1.00 (Seriously. $1.00!)

A bag of one hundred brightly colored balls. . . $9.99

This expression. . .

Priceless. . .

33 about Me

2008-10-17T06:31:00.000-07:00

Here are 33 random bits of Lisa Trivia. Why 33? Keep reading. . .

1. Sometimes I get up in the middle of the night and eat chocolate!
2. I am a true bargain shopper.
3. I love my girls more than life itself.
4. I don't mind being alone (for short periods of time.)
5. I love my whirpool tub but don't get to take long baths nearly as often as I would like.
6. I am a good mother.
7. When I'm upset I call a friend to vent!
8. I am sentimental and cry easy and often over the silliest things, (t.v. shows, magazines, blogs)
9. I am an advocate for my daughter and have sat face to face with each and every one of my United States Congressmen/women and asked for large sums of money for research. (not an easy thing to do)
10. I am shy.
11. Reading is one of my favorite pastimes, although I don't make time for it very often.
12. I have amazing girlfriends!
13. When I grow up I want to write a children's book.
14. I can be a hoarder and have a hard time throwing stuff away-depending on what it is.
15. I am a CNN junkie.
16. I love Christmas.
17. Snow days make me giddy like a child!
18. I am an animal lover but don't have any pets.
19. I am a writer.
20. Motherhood is the hardest job I've ever had.
21. Motherhood is the most rewarding job I've ever had.
22. Someday, I hope to travel to Italy and see the street named after my grandparents.
23. I have never dyed my hair.
24. I hardly wear any makeup, even to work!
26. Avery loves me.
27. Kaylen loves me.
28. Britton loves me. My husband is truly my best friend and we've been in love for over half our lives now! (sixteen years)
29. One of my proudest accomplishments is delivering a 10 pound 3 ounce baby, naturally!
30. I was a gymnast for a long time!
31. I have chronic back pain. (See 30.)
32. I am one year wiser!
33. I am blessed.

No Different

2008-10-13T15:30:00.000-07:00

I guess I always imagined that when a doctor delivered the worst news a parent could possibly imagine it would be like a bomb going off in the room. The few times I allowed my mommy brain to “go there”, dreaming up worst case scenarios long before Avery was even born, I pictured a long conference table, a pastor with a gentle, reassuring hand resting on my shoulder, several doctors in white coats, and then myself curled in a little ball on the floor, unable to absorb “the news,” whatever that might be. So when a doctor actually did deliver horrifying news and I found myself still sitting, in ‘the chair’, the outside world seemingly unchanged, it was nothing like I had imagined. It didn’t feel real. Later that evening, as I began making the phone calls to our family and closest friends, I still felt detached as I repeated the unbelievable news over and over.

I experienced similar emotions two weeks ago, when Dr. Franz said as nonchalantly as we were discussing the weather, “Well, it wouldn’t be lying to say Avery is autistic.” No. It wouldn’t be lying.

And it wouldn’t come as a shock. In fact, it was really just confirmation of what I’ve suspected all along.

A friend recently asked me what I mean when I said that God is “no different” now than he was before Avery was diagnosed. I guess I hadn’t really ever thought about this, assuming it was obvious. Since I began writing about our journey with Avery, I have gotten the occasional email asking for advice about dealing with TSC (which I love!) but I’ve never gotten a question about the deep stuff I write about.

So, what do I mean when I say “My God is no different than he was before Avery was diagnosed?” I have to give credit where it’s due here because I think I first read the phrase “no different” on one of my favorite blogs Bring the Rain. When I first read the words, “He’s no different.” My heart just latched on to this idea because it’s so simple, and so true.

What I mean is this: If I believed that God was a good, loving, and faithful God before TSC, do I believe differently now? The answer is also simple. No.

He’s no different.

I don’t claim to know or understand, why bad things happen to good people, but I do know that every day I wake up and walk through the landscape of my worst nightmare, and you know what, it’s not nearly as bad I as I imagined. I can only believe that I am able to navigate the rough waters of our life because the Lord has been with me every step of the way, and carried me through the hardest times. This is probably the thing about faith and religion that people struggle with the most, and I am certainly not an “expert” when it comes to the answers, but for me remembering that God doesn’t change when the circumstances of our life get difficult, brings me such peace.

That’s not to say that we don’t have difficult days here. It’s not saying that everything is all roses and rainbows, or that we never feel broken and alone. It’s not saying that I don’t still cry myself to sleep sometimes, or wonder what life would be like if I woke up to find out that this was all just a bad dream- a really long bad dream. . .

But you see, the ‘no different’ belief is true about Miss Avery. She is no different two weeks after being officially diagnosed with autism, than she was before. When I look at Avery do I see a different child? Do I love her any less?

Of course not.

If you took all the quirky things that make Avery autistic away, well then, she wouldn’t be our Avery. The Avery that we know and love everything about.

She’s no different.

She’s still my Avery Elizabeth. She is still ornery, mischievous, loving, stubborn, strong, and simply adorable. She still has the biggest green eyes I’ve ever seen and I could stare into them forever. She has a special little “happy” dance she only when her sister comes home from school. She walks/marches with her hands behind her back like a colonel inspecting his troops. She loves Elmo. She loves White Cheddar Cheetos. She loves to go for long walks in her little pink car. She loves trains and cows. She loves when I sing and dance around the living room with her in my arms. She loves to snuggle and prefers being held and rocked in her rocking chair to sleeping in her bed. She loves touching people’s hair and is fascinated by their teeth. She loves it when Grandma wears “pretty” shirts with beads or embroidery. She loves her sissy and loves to be chased. She loves to be tickled. She loves to swing. She loves to spin and loves to be upside down.

She loves.

Call her autistic, call her disabled, call her “challenged.” It doesn’t matter. She’s so much more than her diagnosis. She’s our Avery.

And she’s no different.

Gotta Love KFC!

2008-10-03T10:52:00.000-07:00

Avery was craving some extra crispy chicken and mashed potatoes today, so on our way home from school we swung through the drive through. We placed our order and waited a few minutes. When our order was ready the guy at the window handed me our bag and said,

"Your breasts are really big today so I had to put one in a box!"

Hello.

Who knew KFC had franchised with Hooters:)!?

A Girl and her Scooter. . . that was almost a Puppy.

2008-09-28T13:14:00.000-07:00

Kaylen has been the only little girl in our neighborhood without a scooter for several weeks now. Over the summer she learned to ride her bike without training wheels and we were so excited!! She and one of her little neighborhood friends were the only two who still had training wheels and she was bound and determined not to be the last one to ride her bike by herself. As soon as Kaylen learned to ride her bike, the other little girl apparently gave up, and her parents bought her a scooter. Anyone can ride a scooter and all of a sudden riding a bike without training wheels wasn’t a big deal.

Not having a scooter? A very big deal.

Britton and I could have easily ran out and bought her a scooter. It wasn’t about the money. We talked about it and decided that this was the perfect opportunity for Kaylen to learn about earning money and being strong even when “everyone else is doing it.” We gave her some simple chores to do each day and said that as soon as she earned half of the money, we would kick in the rest. (She got lucky and lost two teeth in the meantime, so the tooth fairy kindly contributed to the scooter fund as well!)

It was kind of hard to watch Kaylen tag alongside on her big, purple, Princess bike, as all the other little girls zipped around on their sleek Razor scooters, but in the end. . . it was worth it.

Early last week Kaylen brought home a completed “star chart” from school which is the behavior plan that her first grade teacher uses to reward her students for good behavior. Kaylen has completed several star charts since school began. We have been giving Kaylen a dollar for each completed chart and this was just enough to earn the much desired, long awaited scooter!

As we were reading stories that night and getting ready for bed, Britton says to Kaylen, completely out of the blue, “So sweetie, which would you rather get on Saturday, a puppy or a scooter?”

Cue needle scratch across record. . .

A puppy? Are you kidding me? We have not been talking about getting a dog, and even though I know my husband has been wanting one for awhile, this totally blindsided me. The only thing that puppies and scooters have in common is that they can sleep in the garage. Puppies pee and poop and bark. Puppies have to be fed, and groomed, and taken for walks. Puppies grow up and then they are dogs.

What if Kaylen replied, “A puppy! A puppy!”??

All I could think was “How in the world I am going to fit Al-Anon meetings into my already jam packed schedule now that my husband is clearly smoking crack?”

Fortunately, being the intelligent, sweet, rational child that she is, Kaylen exclaimed,

A SCOOTER!!

Saving Avery -the beginning

2008-08-11T17:00:00.000-07:00

I have always intended this blog to be a place for me to record and share all of our "happy memories" and decided early on not to write about Avery's illness. As time goes on I realize how ridiculous that is/was. Tuberous Sclerosis Complex is as much a part of Avery's life as anything else, and so by not writing about it, I feel like I'm trying to "pretend" in some way that it doesn't exist. Perhaps someone who stumbles across our story will have their eyes opened to this horrific illness, or perhaps someone else is going through similar struggles and can relate.

So. I'm going to start from the beginning, for those of you just joining us, welcome, it's nice to meet you. Get comfortable because it's a long story. . . .

The truth about Miss Avery is this. When she's happy, she's gloriously, joyfully, happy. And when she's mad, look out. I have spent most of my time writing in these journal entries about the positives and joy Avery has brought to our lives (which are so many) but reality is that most of the time, Miss Avery is incredibly high maintenance. She's very fussy, irritable, cranky, whatever you want to call it, a lot of the time. She always has been. She is a two and a half year old little girl who seems to have a really bad case of colic. Is it because of the her disease?

I have no idea.

Tuberous Sclerosis Complex is a nasty, nasty disorder that causes benign tumors to grow on every organ of the body. Avery has tumors on her brain, heart, kidneys and skin. When people hear the word benign they think "harmless" but these tumors are anything but harmless. Avery suffers from horrible seizures that interrupt her play and fun every single day, leaving her exhausted, confused, and cranky. When Avery was only a year old, she underwent two critical brain surgeries to remove tumors that we doctors thought were causing her seizures, sadly those seizures returned only six months later. We almost lost Avery to post operative complications. . . but that's a story for another day.

Back to Miss Avery . . . we know lots of little ones with TSC who don't spend their days fussing, so maybe it's just Avery's personality? As anyone who has ever spent any significant amount of time with our sweetie knows, she’s a ‘fuss bucket!’ (But a very cute one!) I’ve finally accepted it, and just do my best to keep her content, even if that means the laundry doesn’t get done and the house is a wreck. . .

I can remember when she was seven or eight weeks old and cried for hours on end. Everyone kept telling me to just hang in there a few more weeks, because all babies outgrow their colic by three or four months. Instead Miss Avery just cranked it up a notch with every passing week. I read every baby care book I could get my hands on, and nothing applied to or worked with her.

Then one day her eyes rolled up in her head and she started convulsing violently in my arms.

It was so surreal. Everything seemed to slow down, and as I held her tiny jerking body I thought rationally to myself, 'she's having a seizure,’ in some ways it was a relief. I know that must be hard to understand, how could your baby having a seizure in your arms be a relief?

From the first days of her life, I sensed something was wrong. I just couldn't explain it to anyone. We were at the doctor almost every day for those first few weeks of her life all to no avail., so when she had that first seizure it was like, "Oh, so that's what's wrong with you, you poor thing."

Avery had almost driven me completely over the edge by that point, and so it took me awhile to convince my poor husband that our baby was truly seizing. He was in the shower when I came running in with Avery yelling, “She’s having a seizure!” I feel bad for him because I know he probably thought I had finally, completely lost my mind. I was seriously sleep deprived, as Avery had gotten up every hour on the hour for two or three days before the first seizure. Her longest stretch of sleep that week was literally, thirty minutes.

Britton was working late nights most of the time and so finally, I packed up her cradle, her blankies and binkies and headed home to my parents’ for some backup. I had already shipped poor Kaylen off to Grandma Joy's in Salina. Avery then had another seizure in her infant seat on my parent’s kitchen table, but of course Grandma and Grandpa were unloading the car and didn’t see it, so when I again proclaimed, “She’s having a seizure!” they weren’t entirely convinced either.

I’ll never be able to explain what seeing those first two seizures by myself felt like. I knew what they were that day, somewhere in my brain it the fact that my baby was having convulsive seizures spelled disaster, but I can understand why no one else immediately thought anything was really wrong with Miss Avery. They just assumed I needed some sleep. (Well, that or they assumed that I was completely crazy, and by that point they were probably right!)

That night my mom took Avery for the night and I slept downstairs on the couch so that I wouldn’t hear her. But in the middle of the night I heard my mom call out for my dad, and I ran upstairs to find Avery seizing in my mom’s arms. I was again overwhelmed with those bizarre conflicting emotions of relief that I wasn’t losing my mind, mixed with terror in my heart for Avery.

The road since that day over two years ago has been a bumpy one to say the least. Someone asked me shortly after her brain surgery, “So that’s it? She doesn’t have TSC anymore?” Ahh, if it were so simple. Avery will always have TSC. Avery continues to have seizures every day. She has tumors in her heart that seem to have been acting up since the surgery, tumors in her kidneys that we may have to deal with down the road, and too many skin lesions to count. Women in particular sometimes develop tumors in their lungs later in life. Oh, and let’s not forget the dozen or more brain tumors left in her brain.

This journey is just beginning.

I don’t usually feel sorry for us, because I know of so many other families who are fighting more difficult battles than ours. And this may come as a surprise to you if you have healthy children, but in so many ways the diagnosis of TS has brought blessings upon our family that we would not have received otherwise. We’ve met so many amazing people with such courage and love, we’ve learned to treasure our time with our babies, and we’ve learned to trust our God more each day. I understand my God better now than I ever did before, but that’s a story for another day.

You can’t look into Miss Avery’s beautiful green eyes and see her breathtaking smile and feel sorry for yourself. She’s among the most precious gifts I’ve ever been given, and I will never give up trying to give her the amazing life she deserves.

To be continued. . .

Girls Just Want to Have Fun!

2008-08-05T18:18:00.000-07:00

I have been needing some major retail therapy for awhile now, and last weekend I finally got a huge dose of it! My friends, Nikki and Angie, and I loaded into my car and headed to KC for a weekend of shopping, eating, and major relaxing without kiddos! Needless to say we had a blast!

Angie thought that we needed to get an idea of how our weekend was going to go, so at the first mall we hit, she had her fortune told by the famous Zoltar! Zoltar basically told Angie that she deserved to kick back, relax, and enjoy herself! He really was psychic! So that's exactly what we did!

After a long morning of shopping and a nice lunch we headed to Bare Escentuals to get makeovers! Here we are waiting for our turn to get beautified! We had originally agreed to go to KC with no makeup on, and do Bare Escentuals first, but apparently I didn't get the memo that plans had changed and so I was the only one who didn't put on makeup for the day! Amazingly neither Nikki or Angie really noticed?! I'm not sure if that's a good thing or a bad thing!

Nikki is concentrating hard on how to apply her makeup just right!

The before picture:

And the after. . . Not bad, even if Nikki isn't smiling! I really did love the makeup, but even with my credit card, couldn't shell out the big bucks right now to make the switch from Cliniuqe to this brand.

By the time that we got to our hotel we were getting a little loopy! We had shopped all day, and needed to eat dinner! Here we are posing like the models we saw in the window at XXI. They were posed in some very interesting poses!

The sun was setting behind our hotel, but we weren't finished!! We had a few more stores to hit before they closed at nine!

We shopped most of the day Sunday and then headed home. Nikki took this picture because every time I turned on my turn signal, I also hit the windshield wiper button! Hey, what can I say? It's a new car and I'm not used to it (even though we've had it for four months now!)

The back of my car was overflowing with our goodies, including a hallway table that Angie found at one of our last stops!

We had sooooo much fun, and are planning another trip for Christmas shopping, we just have to let our credit cards cool off for a bit! I have been really blessed to get to know these two gals because it was definitely lonely here in E-town for the first several months after we moved here! We can be ourselves around each other, we crack ourselves up, and hey, we love to shop! What more could a girl ask for!

Tag, I'm it!

2008-07-29T17:12:00.000-07:00

So do I have to turn the Christmas music off, now that the twenty-fifth has passed and it's no longer "Christmas in July" here on the Hart of the Matter? Bummer. Well, I leave my Christmas tree up until at least Valentine's day, so maybe I can leave the music playing a little longer.

My dear blogging obsessed friend, Bethany, "tagged" me, which gets me off of the hook from thinking up my own post this week! Here goes. . .

A. Attached or single? Attached
B. Best friend? No need to name names...she knows who she is!! Ditto.
C. Cake or pie? Oooh that's a tough one. It depends on what kind of cake or pie, but I guess pie? Nothing fruity though!
D. Day of choice? Friday.
E. Essential item? A computer with Internet access!
F. Favorite color? Green.
G. Gummy bears or worms? Bears. After I read the book "How to Eat Fried Worms" eating candy worms was all over for me.
H. Home town? Osage City, Kansas
I. Favorite indulgence? Bubble baths, pedicures, Oreo cheesecake. . .
J. January or July? Hmmm. . . this one's a toss up, because I love every season, but I'm going to go with January because there's always a chance for snow!!
K. Kids? Two sweetharts, Kaylen and Avery
L. Life isn't complete without? Friends and family.
M. Marriage date? May 20, 2000.
N. Number of brothers and sisters? Three older brothers. And I do mean OLDER. My 'youngest' brother was 19!!!! when I was born! (I was already an aunt when I was born!)
O. Oranges or apples? Apples.
P. Phobias? Spiders. Hate em'!
Q. Quotes? Life is measured in moments, not milestones.
R. Reasons to smile? Seizure free days. Kaylen kisses. Avery giggles. Snuggles, hugs, kissess. . . .my girls and my hubby.
S. Season of choice? I love them all, but I lean towards winter.
T. Tag 5 people: I only have three "blogging" friends that know me so, Rachel, Nikki, and Angie TAG, you're it! I don't think that Nate (Confessions of a CF Husband) or Angie (Bring the Rain) would actually be reading this?!
U. Unknown fact about me? I going to be a great-aunt at 33! Trying to figure that one out? My niece (that was born before me!) is having a baby, and I'm so excited!
V. Vegetable? Green peppers.
W. Worst habit? Procrastinating. (But then I do really great work under pressure. My new boss :) is reading this. Don't worry, when it comes to work, I never miss a deadline!)
X. X-ray or ultrasound? It depends on which organ we are looking at? I have had lots of really fun ultrasounds though, and usually x-rays are for yucky stuff like slamming my finger in the car door and breaking the tip off! TMI?
Y. Your favorite food? Oh wow! One food? Impossible. Cheesecake, tacos, chips and salsa, macaroni and cheese, chocolate, french toast. . . . yeah, I love food!
Z. Zodiac sign? Libra

Christmas in July

2008-07-25T06:18:00.000-07:00

It's official!! Christmas is half-way here! I L*O*V*E Christmas. I would put my Christmas tree up now and leave it up until December, if I hadn't just taken it down after Valentine's Day! There are so many things about the holiday season that make my heart sing, that I look forward to winter from about this point in the year on! (This is a long post, but it is deep, so I hope you will bear with me and read the entire message!

I love the traditions surrounding Christmas, I love the memories of all my childhood Christmases (is that a word?), I love Christmas shopping, I love Christmas decorations, I love Christmas music, I love Christmas movies, and celebrating the birth of our Lord.

Christmas has taken on a whole new meaning since I became a mommy. Being Santa is almost as fun as believing in him isn't it? I love searching for just the right presents, wrapping them, hiding them, and watching the joy on Kaylen's face as she unwraps each one!

We have started some fun family Christmas traditions in the last couple of years. Each December I wrap up 25 Christmas themed books and for the 25 days leading up to Christmas, I let Kaylen upon up one book that we read together each night at bedtime. She LOVES this version of an advent calendar. It stretches out the excitement of opening gifts for twenty-five days. I put the books away after the holidays so they are 'new' each Christmas. We have been doing this for the past three years now. People always ask how I come up with 25 Christmas books? Holy cow! I have at least FIFTY or more. I was a teacher for a long time so I bought them from book orders and the Scholastic warehouse book sale each December. Friends and family have contributed to our collection, so we have way more than enough to wrap one for each night!

Our most recent tradition started with Avery's birth I guess. We brought Avery home from the hospital on Christmas Eve, and Kaylen home rode with us instead of Grandma. On the way home Kaylen was noticing all of the Christmas light displays, and so now on Avery's real birthday we fix hot chocolate, load into the car and go look at Christmas lights. I love that even though our girls are young, we have our meaningful traditions that Kaylen really looks forward to.

Christmas of 2006 was a really difficult one for our family. Avery was seizing twenty to thirty times a day and was just days away from her first brain surgery. I was a nervous wreck about it. On December 22nd Avery celebrated her first birthday, but it was under the dark cloud of knowing the surgeries were just days away. We took Avery to have one year portraits done, but she was so drugged up from the seizure meds, that the pictures still make me sick to my stomach to this day when I look at them. All of the camera flashes at the studio made her go into a really bad seizure and so we left there, all of us in tears, without getting any good shots of her.

A friend of a friend who was getting into the photography business at the time, heard our story and offered to come into our home and take pictures of our girls. I don't remember feeling happy or joyful during those weeks leading up to Christmas and Avery's surgery, but these pictures capture none of the dread or despair I was feeling and looking at them brings a smile to my heart. I see only joy and love between two sisters in these sweet pictures and I am so thankful that we have these images to remind us that despite the unbearable situation we were dealing with that year, our girls still enjoyed and celebrated a beautiful Christmas that year!

I actually took these first two pictures myself.

The wooden rocking horse Daddy built for Kaylen for her first Christmas.

I LOVE this one!

There are hundreds more where these came from, so maybe I will find time to share a few more of my favorites tomorrow for "Flashback Friday.' In the meantime, Merry Christmas in July!

Celebrate!

2008-07-12T13:57:00.000-07:00

Wow! It's hard to believe that summer is more than half over! Kaylen (and I) go back to school in less than a month! Where has the time gone!? We have been busy, busy, busy this summer as you can tell from my few and far between updates.

One of the highlights of this summer was our Fourth of July bash! We had over fifty people gathered in our backyard to enjoy a picnic, waterslide, and fireworks for the Fourth! It was so much FuN!

The table was set with my now famous (thanks to Bethany) wrapped silverware, to kick off the festive mood. . .

Kaylen and I had a blast making this Sparkler centerpiece for the buffet.

Just a few of the dozens of people gathered in our backyard!

The waterslide!

Fearless Kaylen flying down on her belly!

Airborne!

Miss Avery getting in on the action! Her hair was CrAzY from the humidity that night!

Stompin' on some spap-pops with Mommy . . . great physical therapy!

Having a blast!

Kaylen's first sparklers!

Light it up Daddy!

Oooooh! Ahhhhh!

On the Fifth we headed out to the lake on our friends' boat to watch the awesome fireworks display from the water! It is sooo beautiful to see the fireworks and their reflection on the lake with nothing blocking your view! With no city lights it is completely PITCH black which makes them even more breathtaking! (It also makes for an interesting boat ride back to the dock!)

I have to say that this Fourth of July was one of my all time favorites! Avery got to stay up late and watch the fireworks from the safety of my lap and her "WOWs!" and "YAYs!" made it so, so special! I can't wait for next year!

Take Cover!

2008-06-22T09:06:00.000-07:00

I can't remember a storm season as crazy as the one we've had this year. For the past month or so we have been under some kind of severe thunder storm warning or tornado watch at least once a week! A couple of weeks ago the weather forcasters on all the stations made a huge deal out of how the weather conditions were falling together in a pattern eerily similar to a terrible tornado that struck our town thirty some years ago. Everyone kind of went into panic mode and kept their eyes to the sky. That night we got some heavy rain and strong winds, but nothing to get overly excited about.

After those storms I decided that it would be a good idea to put together a little "emergency kit" to keep in the cabinet in our basement guest bath, which is where we would go in the event of a real weather emergency. I put diapers, wipes, a few days' supply of Avery's meds that we import from Canada, some granola bars, a flashlight, candles, matches, and a case of bottled water in the cabinet underneath the sink. I assumed that once I did this, we probably wouldn't go back in the basement for a storm until next spring, but boy, was I wrong! Last Thursday night the tornado sirens went off, and we heard on the news that a tornado was on the ground just south and west of our house! We were directly in its path!! Things looked and sounded pretty scary, so we headed to the basement and waited for the storm to hit. We waited . . . and we waited. . . and we watched the radar on t.v. which seemed to show that were directly in the line of the tornado. Fortunately the funnel cloud stayed in the sky and never touched down.

When we go to the basement, we try to make it fun, and stay calm so that we don't completely freak out Kaylen. Right now, she thinks its kind of cool to "take cover," so we will have to teach that storms aren't a game. I don't think Avery has a clue one way or another. We explain that the storms could be very dangerous, but that we are fortunate to have a safe place to go, and that she doesn't have to worry about it. You can tell from the pictures below that she doesn't seem too concerned!

The seizure helmet and daddy's football helmet come in handy!

Here's everything we need in case we get stranded in our basement for a while!

O.k. well not, everything. . . we had plenty of warning about this storm, so I did what any good mommy would do, I gathered up the new Gymboree clothes that Avery hasn't worn yet, and brought those down too! (Some people would gather pictures and valuables, ours are mostly all in the basement to begin with, but my/ I mean Avery's Gymbo were sitting ducks!)

Here's another little Gymbo outfit that she has worn, but it seemed like it deserved to be rescued as well. The backpack contains jammies, shoes, and a couple of days' worth of outfits just in case! It was still packed from last week!

As long as we have our ba ba and each other, we'll be o.k.!

Wordless Wednesday

2008-06-18T06:35:00.000-07:00

O.k. not entirely wordless. One word.

Precious.

Lazy Hazy Days of Summer

2008-06-14T06:49:00.000-07:00

Last week, while Avery and I were in Kansas City for school, Kaylen spent the day with her sweet friend, Morgan. Morgan's mommy, Nikki, took these fun pictures of the girls enjoying some fun by the pool. I'm so lucky to have friends who are much better photographers than I am! Right now, many of my favorite pictures from the last two and a half years are trapped on our home computer that has finally crashed -we think a bolt of lightening finished it off. We still don't know if we will be able to recover any of the pictures stored on its hard drive, so I really treasure any pictures of my girls that I come across these days.

Kaylen is growing up to be such a beautiful little girl. I love these pictures because they're of Kaylen, just being Kaylen. Usually when I try to take pictures of her, I get the fake cheese grin.

Notice Morgan's hair is soaked and Kaylen's is still perfectly dry. Morgan is an amazing swimmer. She is part of a swim team, and already goes off the diving board and swims to the side by herself. Kaylen doesn't even dog paddle. She likes to splash and wade in the shallow, but prefers to keep her face and hair dry. We've got some work to do this summer. . .

Libby Lu

2008-06-13T10:58:00.000-07:00

Last week Kaylen's friend Rylee celebrated her sixth birthday by taking three of her best friends to Libby Lu at the Oak Park Mall in Overland Park. Her mommy rented a fifteen passenger van so that us mommies could tag along with our girls .

I used the hour and a half trip to rest up for the big day. Thanks, Nikki, for capturing this flattering shot of me :)

We enjoyed lunch at the Rainforest Cafe before heading to Libby Lu.

Then it was off to get glamorized at Club Libby Lu!

Party like a rock star!

Making sure it's just right :)

After all the girls got their makeovers they headed out to the mall to get their groove on. It was too, too cute!

Here they are dancing to "I got all my sisters and me."

What a fun day! I have to say that I'm pretty sure the mommies had as much fun (or more) on this trip. Can you tell that I was itching to get in on the action?

I realized on this trip, that since moving down here, I have had somewhat of a negative attitude about living in a "small" town. I miss so many things about 'city life' - late night Target shopping trips, Chipolte, Panera, the malls, Gymboree, just to name a few. Spending the day at a mall that I used to visit once a week with four fun moms and their girls was a wake up call. I wouldn't have had nearly that much fun had I gone to the same birthday party a year ago. It would have been just another party at the mall (or Chuckee Cheese, or Pump it Up, or _______ fill in the blank) but because it's not something we do all the time now, it made the day really special and exciting. This is one birthday party Kaylen won't soon forget. I hope Rylee felt the same way!

I'm back!

2008-06-10T22:37:00.000-07:00

I have been taking a little blogging break these last couple of weeks. Kaylen is home from school for the summer, and with her activities and school in KC for Avery I just don't seem to find the quiet time to sit at the computer to upload pictures and update this blog like I did during the winter.

I find that I enjoy "being" a mommy more than "blogging" about it and so my blog updates are getting spaced out a little. I do love sharing pictures of my girls and the fun that we have, so I will keep trying to add new entries as often as I can. I created this blog for fun, not to add another "must do" to my to do list, and sometimes that's how it feels. I don't want to be a "bitter blogger."

I read some pretty "heavy" blogs, Confessions of CF Husband, Bring the Rain, and several others that really make me stop and think about everything in my life that I take for granted. These stories make me feel like some of the things I might share with the rest of the world are kind of trivial. I know, our life isn't trivial, we have our share of heartache here at the Hart house, it just feels that way sometimes.

I also read some pretty "light" blogs that make me feel like a pretty "boring" mommy, for lack of a better word. So many blogs I read, I find people sharing amazing crafting projects they've taken on, creative things they've done with their kids, or worse yet for me, how incredibly cute and organized their entire house is. Sometimes I find myself wondering "are these people for real?" or are they just painting a pretty picture to make themselves feel better? Do they 'do things' just so they can blog about it? Seriously.

You won't find either the "heavy" or the pretty picture here. What you see is what you get. The Hart of the Matter is that I love my girls (and their Daddy) more than life itself and they are my life. Not my craft room, not my projects, and not this blog. I love them so much that I want to share them, but not if it means taking time away from the fun we're having to blog about it.

I guess we all search for "balance" in our lives. Some people seem to be able to do incredible things every day and still find time to scrapbook, craft, bake, and blog. I think for most of us, we're just doing our best to keep it all together. The old saying is so true for my family, 'we may not have it all together, but together we have it all."

I did add a couple of new updates below and some fun pictures below so keep reading. . . and keep checking back! Hey, and leave a comment while you're at it. . . :)

City Girls

2008-06-10T20:51:00.000-07:00

Miss Avery attends preschool two days a week in KC which is an hour and forty five minutes one way from our house! As most of you know Avery has tuberous sclerosis and because of it tumors, seizures, and pretty severe developmental delays. Avery's school accepts children with all kinds of disabilities at two years of age (most don't start until three) and there she is able to get amazing one on one physical, occupational, speech, cognitive, music, and water therapies. It is just an amazing place and so we have found a way to make the long drives (and horrible gas prices) work.

Now that school is out Kaylen goes with me to KC twice a week. While Avery is with her class, Kaylen and I go on little adventures nearby. We lived in a suburb of KC for ten years and one of our favorite hangouts has always been Crown Center. I have been taking Kaylen there since she was about two years old. We love the fountains, the shops, and eating at Panera. Last week the weather was beautiful and we spent the morning sipping coffee (and juice) hanging out by the fountains, and just enjoying being back in the city for a little while!

I can't function without my morning coffee, aka orange juice.

That's better!

Campin' Out

2008-06-10T19:12:00.000-07:00

Kaylen had such a fun time at Daisy Scout Day Camp. It was a day of many 'firsts' for her. She got to cook lunch and dinner over an open fire, go hiking, pitch a tent, and of course, make smores! Daisies has been such a fun activity for Kaylen and she has made some sweet, special friends. Her Daisy friends weren't even in her Kindergarten class but they all just 'clicked' and will be seeing each other often over the summer. Thanks to their 'fearless leader' my friend, Nikki, they had an amazing year!

Catchin' Some Waves

2008-05-26T13:41:00.000-07:00

Is it possible? Can summer finally be here? Well, it sure felt like it Sunday! Even though the temp wasn't warm enough to take a dip in the lake, we had a great time out on our friends' boat. We spend many happy summer afternoons, cruising the lake, swimming, and just hanging out with our good friends who are always so sweet to invite us out boating with them. The girls had so much fun! This was the first time Avery really "enjoyed" herself on the lake. Last summer I think she was too little to really get it, but despite the frigid water temps she did have a blast splashing around with the little kids in the inflatable "island" that acts like a floating baby pool on the lake.

Who gave this girl a license to drive?

How do you make this thing go?

I wonder what happens if you push these buttons?

Chillin'

Captain Kaylen, full speed ahead! (She really is "driving" here, with some backup from Uncle Loren)

Look at me Mommy!

Hang on Sissy!

Get Your Groove On

2008-05-24T06:46:00.000-07:00

Last night was the big night! Kaylen's very first dance recital! Holy cow! Talk about intense! I don't know if I was fully prepared to be initiated into the club of full fleged "dance" moms. There was a lot of running (literally) around to pick up Kaylen from back stage, running to a dressing room, changing at lightening speed into the next costume, touching up makeup and hair, and then running back to back stage to get ready for the next number. Phew! I truly worked up a sweat, and to be honest . . . don't really remember watching either performance. We weren't allowed to take pictures or video during, so we will have to wait for the professional's videos and pictures to come back and then probably shell out big bucks to actually watch our sweet girls perform. I can only imagine that the older they get, and the more competitive they get, the more "high stress" it gets. We'll see if we make it that far. . .

At home before the recital.

Backstage right before her second number. A tap routine to the theme song from the Andy Griffith Show.

After the performance waiting with her sweet friend Brittany for curtain call.

Curtain call. The only part of the show I really remember! I was finally able to take a deep breath. It was soooo cute. The big girls walked the little girls on stage and they all waved and took their final bows. You probably can't find Kaylen up there, but she's up there!

The thing that really shocked me, was how well Kaylen took the "pressure." This was no little production. It was at Albert Taylor Hall (a big auditorium) on the ESU campus. She performed in front of hundreds of people. A full house. She performed perfectly with a big smile on her face, like she had done it hundreds of times. She didn't even act or look nervous! I have never done something like this! Ever. Let alone doing it at the tender age of six! She just amazes me!

Afterwards we celebrated with some ice cream and Kaylen's best friend from dance and Kindergarten, Miss Megan! The two of them make quite the pair!

Let's get out of here!

Phew! Done! Let's eat!

I am so proud of Kaylen! She is already talking about next year. Sigh. What a whirlwind month it has been ! Now it's time to rest and relax for summer and think about next year a little later!

Way to go Kaylen! Mommy and Daddy and Sissy are so, so proud of you! You are simply amazing!

Flashback. . . Fast Forward Friday

2008-05-23T06:37:00.000-07:00

The first day of Kindergarten August '07

The last day of Kindergarten May '08

My baby is a first grader! Gasp!

So much to Blog

2008-05-22T10:44:00.000-07:00

so little time! Sorry for the lack of posts lately. Last week we celebrated Kaylen's birthday (twice), she and I baked and decorated homemade cookies for her class birthday party, she had dress rehersal and pictures at dance, I ran over her bike and ruined a tire on my new car (costing me $225!), and on top of it all, I had a big, very profitable garage sale on Friday and Saturday. Then on Monday of this week, Avery and flew to Cincinnati for her hospital stay. She was hooked up to video EEG monitors (a bunch of wires glued to her scalp) to try and catch the seizures she is having on video and EEG monitors. She had a lot of seizures so the tests were successful, although not necessarily what we wanted to hear? We flew home yesterday, and it was a pretty stressful trip for reasons I might explain later. . .

So that's my excuse for lack of blogging. Fair enough?

I will leave you with some pictures of Miss Avery hooked up and looking so adorable in her little hat at the hospital.

Stay tuned for lots of fun updates. Kaylen's field day, dance recital, the story of how Britton and I met in honor of our eighth wedding anniversary, and tons of cute Avery pictures! I can do it, it will just take me a few days! Keep checking back!!!

Happy Birthday Kaylen Rose!

2008-05-15T04:45:00.000-07:00

Six years ago today I became a mommy.

I can't believe Kaylen is six, because that beautiful day feels like yesterday! My baby is six! I can still remember driving to the hospital that morning, (to be induced), and thinking how surreal it felt to know that sometime that day, other people would be holding the baby I had all to myself for the last nine months. I remember feeling her kick twice on the way to the hospital and thinking that I would really miss those kicks. I knew that I would not miss the sixty pounds that I gained during pregnancy! Yes, sixty! My labor and delivery were pretty easy for the most part, thanks to a great epidural. I had been 5cm dilated for over a week, so I really didn't have that far to go, and once they started the pitocin it was only a few hours before Kaylen arrived. My parents, and Britton's aunt spent the day with us, talking to me, keeping us company, and before we knew it Kaylen was ready to make her grand entrance. We were all shocked to see her tipping the scales at 8 pounds 8 ounces! ( I remember seeing all of her black hair and being so excited that she had lots of hair!! )

Yikes, look at all those chins. (All mine.) Her hair really was that black. Not brown, jet black!

For the first few days, she slept exactly like this. . . with her hands tucked in the same position, so precious. . .

Kaylen has the most expressive eyes. People were always making a fuss over how beautiful she was when we were out and about, and I think it was because of those big, brown eyes!

Tonight I have been looking through the boxes and boxes of photos we have from Kaylen's first two and a half years, before we 'went digital' and I started making a pile of pictures I wanted to share. Before I knew it I had a little pile of at least fifty pictures, and I wasn't even through her first year! I should have started this project a week ago and turned it into a video montage, but I was busy 'living in the moment' getting everything ready for her birthday parties, and trying to make this year really special for her. I'm so glad that I've had time this evening to reminisce. There are so many memories, layered upon memories, and I realize, that even though it breaks my heart to admit it, I'm starting to forget "baby Kaylen." She is so grown up these days, and looking at these 'old' photos of her, reminds me of what a beautiful, happy baby she was. What a chunker she was! And oh, what an easy baby she was. Unlike, ehhhemm, another sweet little Hart baby I know.

She was always such a ham for the camera. It was never hard to coax a smile out of her for the camera!

On the day of Kaylen's first birthday, Daddy received his Master's degree, so we had a lot to celebrate!

It is easy for me to see, looking back at the first months of Kaylen's life, the beginnings of the amazing little girl that she is growing up to be. Early, early on she was a loving, compassionate toddler. Long before she could talk, she would 'comfort' someone when they were upset by coming over and patting them or laying her head down on their lap or shoulder. She always wanted to give you some of what she was enjoying, be it a bottle, or a mushy cracker. She has always loved to share and give things away. One of her favorite games to play with Grandma, has always been "Christmas." They 'wrap up' little gifts and deliver them to everyone.

Just recently one of Kaylen's little neighbor friends walked over in the rain to see if she could play. Unfortunately we were getting ready to go somewhere or do something so we had to send her back home. Pretty soon, I saw Kaylen on the couch crying softly. When I asked her what was wrong, she really started to sob, and said, "I just feel so bad, Gracyn walked all the way over here in the rain and now she has to walk all the way home in the rain. She must be so sad." Talk about melt my heart!

Then just yesterday morning, I smacked Avery's little hand when she turned on the gas stove for the umpteenth billion time. Instead of Avery breaking down into tears, you guessed it, Kaylen started to cry, and said, "She doesn't understand! Don't hit my sissy." She came over and wrapped her ever protective arms around Avery, who was oblivious to the drama. I felt terrible. I tried to explain that I worry about Avery burning her hands, or the house down, but still. Where did she learn this kind of compassion and empathy?

I could write forever about the ways I love my Kayleybug. She is truly a blessing straight from heaven.

Happy Birthday Sweetie!

I Scream, You Scream. . .

2008-05-10T16:55:00.000-07:00

We all scream for ice cream! Today was the kickoff of Kaylen's whirlwind birthday week - she doesn't actually turn six until Thursday but she has one more party, a trip to the circus, Chuckee Cheese, and roller skating all to look forward to this week.

As some of you know, I love to plan my kids' birthday parties. I don't mind a good Chuckee Cheese party now and then, but I love to open up my home to Kaylen's friends and get creative with a theme. I usually pick the theme several months (sometimes a year) in advance and buy things as I go. I had SO much fun with this theme! I made a homemade happy birthday banner, fun little dangly ice cream cones, and a "pin the cherry on the ice cream cone banner." The kids loved playing this game!

These are just the first "teaser" pictures, mainly to tide Bethany over until I upload the ones off of the good camera. Britton took a ton of great "action" shots and I want to share those too!

My favorite. . .

Flashback Friday

2008-05-09T05:10:00.000-07:00

Here is Kaylen's first class picture. I thought it would be fun to look back at one of my first class pictures to see if there is any resemblence. Kaylen is in the second row in the pink - click on the picture to make it bigger. Bethany, look closely. What is wrong with this picture?

We both have that fake "I'm smiling because you told me to" smile on our faces, but other than that, we really don't look that much alike?! Can you find me?

CRASH!

2008-05-08T05:25:00.000-07:00

Poor baby Avery. The last thing she needed was another "hole in her head," but she took a huge fall in the driveway last night and caught herself with her forehead. She took it all in stride, as usual, barely stopping to cry because she was in a big hurry to get back to playing. Her pain tolerance is amazing to the point of being ridiculous.

She did go to school today, but I felt AWFUl. It was obvious how bad the bonk looked, and they even had the school nurse come look at it. It didn't prevent her from having a blast and working hard. She even got in the pool for her first session of water therapy. She worked SO hard. She walked back and forth in waist deep water for a LONG time. This kind of exercise is so good for her strength, coordination, and balance. You go sweetie. Mommy couldn't be more proud of you right now! You keep defying all the odds stacked against you and everyone is amazed by your will and sheer determination to beat this nasty disease! Love you forever!

O.U.C.H.!!!

Fuzzy, but that smile is priceless. She's moving so fast, I can't keep up with my camera!

Trying to blow bubbles, and drink the pool. Yucky!

Extreme Makeover Baby Edition

2008-05-07T07:14:00.000-07:00

These pictures are actually from a few weeks ago (during the Final Four playoff games), but I've been meaning to post them, so here they are. These are our sweet friends, Garrett and Gavin, helping Kaylen to give lil sis a makeover. They found Kaylen's bag of pretend makeup, curling iron, blow dryer, etc. and decided to have a beauty salon. Avery was their first customer. For some reason she must have enjoyed all the attention, because she was very cooperative. Unlike her usual protests when she gets a "real" haircut!

I love this first picture because you can see Kaylen is using the curling iron, Gavin is spritzing Avery with some perfume, and Avery appears to be admiring her reflection in a little mirror, except that she's holding it backwards!

Look at the concentration on Kaylen's face!

Avery decides to help them out with the blow dryer.

You look beautiful! "Who me?"

I know Garrett and Gavin's Daddy is so proud of his boys, and is envisioning their future in the style and beauty industry. Who knows maybe the three of them will open their own salon!?

What's in a Name?

2008-05-06T04:00:00.000-07:00

Even though this is a pictureless post, it's still pretty darn funny. I think my personal favorite is a toss up between "Green Margarita" and "Chocolate Flip Flop."

What's in a Name?
1. YOUR ROCK STAR NAME (first pet, current car):
Callie Outlook

2.YOUR GANGSTA NAME (fave ice cream flavor, favorite type of shoe):
Chocolate Flip Flop

3. YOUR NATIVE AMERICAN NAME (favorite color, favorite animal):
Brown Cat

4. YOUR SOAP OPERA NAME (middle name, city where you were born):
Ann Emporia

5. YOUR STAR WARS NAME (the first 3 letters of your last name, first 2 of your first name):
Harli (Hey that’s cute! I could be Harley!)

6. SUPERHERO NAME (2nd favorite color, favorite drink):
Green Margarita

7. NASCAR NAME (the first names of your grandfathers):
Fred Earnest

8. STRIPPER NAME ( the name of your favorite perfume/cologne/scent,favorite candy):
Dream Kisses (yup, that one works!)

9. TV WEATHER ANCHOR NAME (your 5th grade teacher’s last name, a major city that starts with the same letter):
Lilly Loveland

10. SPY NAME: (your favorite season/holiday, flower):
Fall Lilac (huh?)

11. CARTOON NAME: (favorite fruit, article of clothing you’re wearing rightnow):
Pineapple Capris

12. HIPPIE NAME: (What you ate for breakfast, your favorite tree):
Cinnamon Life Bradford Pear

What's in your name?

Kaylen's First Prom

2008-05-05T07:29:00.000-07:00

Yes, you read that right. Kaylen attended her first Junior/Senior Prom Saturday night. . .with her Daddy. Daddy needed a date, and Avery and I already had plans to hang out with Barney and the Wiggles, so Kaylen was the lucky girl! It comes with the territory of Daddy's job, that Kayley spends a lot of time at high school activities. Pretty much everyone knows her, she has made a lot of high school "friends" who dote on her and she just basks in the glow of their attention. This has always surprised me. She is very shy by nature, and doesn't like to "be in the spotlight" so to speak, but she doesn't seem to mind when it comes to hanging out at whatever event Daddy is attending.

Kaylen was so excited to get all dressed up and she had a great time. Her favorite part was seeing all the girls in their fancy dresses. Kaylen and Daddy got their "prom picture" taken with the fun backdrop and everything. He plans to take her every year, so that by the time she attends her own prom, we will have a picture of them togther every year for over ten years. She didn't want to come home when I went to pick her up around 9:30, and commented on the way home, "I can't wait until next year! I'm going to wear a really fancy dress, like that girl in the pink!!" Ummm, yeah. . . About that dress. Probably not next year. Probably not ever. She was referring to a very risque' strapless, tight pink dress that one of the girls was wearing. Thank goodness we have a long time before she attends her real prom. Hopefully by then the trend will be long sleeved turtleneck dresses.

My Fairy Blogmother

2008-05-01T20:47:00.000-07:00

Yes, you're on the right blog! Don't you love it?! I've been working day and night . . . . with an extremely talented blog designer named Jennisa on this blog design. O.k. who I am kidding? I wasn't working. Patient beyond belief, funny, sweet and amazing Jennsia was working. I was just bugging her with questions and opinions and thoughts on how I wanted my new blog to look. I wish that I could tell you to hop over to http://www.onceuponablog.org/ to make a wish for your new blog, but unfortunately her talents are in such demand that with 90 some people on her waiting list, she has closed it for the time being! Thanks Jennisa for making my blog dreams come true! I love it!

Sneak Peak

2008-04-30T08:45:00.000-07:00

It is so hard to imagine that in two short weeks my 'baby' Kaylen will be six years old! I have been hard at work perfecting invitations for one of her two parties and I am so excited with how these came out! In these pictures the outside is finished but they still need wording on the inside, but you get the gist. Tonight Kaylen is going to help me put on the finishing touches (the cherries on top!) because she really wanted to help, and then she will 'hand-deliver' these little gems. She couldn't be more excited!

The outside. Doesn't that just look yummy! In case you couldn't tell we are having an ice cream themed party! They are so sparkly!

The inside where the wording goes!

Z.O.O. spells Zoo!

2008-04-28T14:34:00.000-07:00

Last weekend as Britton was getting ready for the day, and the girls were playing in the living room, I looked outside at the beautiful spring weather, and decided that I didn't want to spend the day as I had originally planned. Most weekends I catch up on leftover tasks from the week, folding laundry, cleaning bathrooms, and such while Britton tinkers in the garage or the yard. I intercepted Britton in the bathroom as he was finishing getting ready and suggested that we pack lunch and head to the Topeka Zoo, fully expecting him to protest and spell out everything he had planned to accomplish that day. So I was surprised when he agreed and seemed excited about my idea! We decided to keep our plans a surprise and just told Kaylen that we were going somewhere fun. She spent the next half hour trying to guess where we might be taking her, as we gathered up snacks and packed the car.

As we were driving out of our neighborhood we saw a co-worker of Britton's riding his bike, and stopped to say hello. When he asked where we were headed for the day I spelled out "z.o.o." Without missing a beat Kaylen pipes up from the backseat "Z.o.o. spells zoo!The zoo?! We're going to the zoo!" So much for spelling our secrets!

When we got to the park we saw the old fashioned train pulling into the station across the street from the zoo, and Kaylen decided that Avery would definitely be disappointed if we didn't take a ride. (Avery is obsessed with trains! Whoo! Whoo!) This was Avery's first ride on the Gage Park train and you can tell by the smile on her face that she loved every minute of it!

While we were on the train we passed the carousel and the tulip garden, and decided that after checking out the animals at the zoo we would stop by both on our way out. The highlight of the zoo trip was visiting the monkeys. There were two of them in their outside exhibit, and they both had sheets or blankets wrapped around their shoulders like capes as Kaylen sometimes does when she's pretending to be a super hero. When they saw us standing by the glass window in their little "observation" room one of them came right up to the window where Kaylen and Britton were standing and put both its hands up to the window exactly as Kaylen was doing. He put his hands up to Kaylen's hands exactly! She was a little freaked out at first, but got over it when the monkey reached out and tried to hand her the stick that he was holding. Unfortunately all of my pictures are just of my own camera flash, so you can't even see the monkey. In the meantime I took Avery outside to get a closer look and the same monkey came outside and THREW the stick at me that he tried to hand to Kaylen! So, so funny. I think Avery was very confused by the whole thing!! Every time I said, "Look Avery! Look at the monkey (or the giraffe, or the hippo) she did this. . .

In case you can't tell she is turning her back on whatever it is that I'm pointing out. So not impressed. (Yes. She still drinks a bottle. See that little line on the top of her head that looks like a part? It's a scar. From brain surgery. When (and if) you ever have brain surgery than you can drink out of a bottle too! For as long as you want. Really.)

We had a fun time riding the carousel, but by that time everyone was getting a little cranky. . .

Despite my best efforts and attempts at bribery, I couldn't get my girls (or Daddy for that matter) to pose in the beautiful flower beds! Avery was having none of it!

So my dreams of a fabulous photo shoot in the breathtaking tulip garden, didn't really pan out. I rarely take pictures of "nature" or things other than my girls, but these flowers just took my breath away. There was every color imaginable and they were absolutely gorgeous!!

I have dreams of having a garden of brilliant blossoms like these in my own yard someday. Sadly I definitely don't have a 'green thumb,' mine is more of the dried up dead brown thumb variety.

I am so glad that we decided to be spontaneous and take off on a little adventure! It was well worth stepping over the piles of laundry to spend the day having fun with my favorite people instead!

Foursweetharts "Four on Friday"

2008-04-25T14:54:00.000-07:00

four jobs i have had in my life:

camp counselor

sales clerk at sears (in the baby department)

teacher

mommy

four movies i've watched more than once:

pretty woman

how to lose a guy in ten days

when harry met sally

topgun

four places i've lived:

Osage City, Kansas

Manhattan, Kansas

Kansas City, Missouri

Olathe, Kansas

four tv shows i watch:

jon and kate plus 8

oprah

grey's anatomy (well used to, before the writer's left us all hanging!)

the bachelor

four places i have been:

chicago

d.c.

orlando

dallas

favorite foods:

chips and salsa

pretty much anything chocolate

mc donald's double cheeseburger

cheesecake

(hmmm. . . .I wonder why I've gained a few pounds in the last couple of years. . . . )

four places i'd rather be right now:

on a beach

on a date with my husband

sleeping

shopping

four things that drive me cRaZy:

slow drivers!

rude store clerks

losing my keys (often)

laundry

four things i'm looking forward to this year:

summer (and flip flops, the pool, the lake, barbeques, picnics. . .)

bethany and crew coming home to visit

our step forward to cure tsc walk

Christmas, (I start looking forward to it on the 26th of December)

four places i love to shop:

target

kohls

gymboree

old navy

Wouldn't You Know It?

2008-04-19T09:17:00.000-07:00

For the first time in a long, long time I have been REALLY sick. I don't know if it was the flu, or just a really nasty cold, but whatever it was, it totally wiped me out. So Daddy graciously offered to get up with Miss Avery through the night last night. As most of you know, Miss Avery does not sleep. Ever. She gets up every three or four hours like clock work, like a newborn. Always has, and perhaps always will. Or maybe not. Last night, on Daddy's shift, she went to bed at 8:30 without a fuss, and woke at 8:00 THIS MORNING! What? Are you kidding me? Why? How? Huh? So instead of experiencing a night in the life of Mommy, there Daddy was snoring away peacefully as usual, while I crept into Avery's room every few hours to be sure she was still breathing. At one point I just peered at her in the darkness thinking, "Come on, are you seriously going to let him off the hook like this?" If she hadn't looked so peaceful, I might have given her a gentle, "time to wake up, honey" shake, or at least "accidentally" shut the door with a little too much force.

So much for Mommy "sleeping through the night."

Flashback Friday

2008-04-11T08:23:00.000-07:00

I will never forget the first few moments Kaylen and Avery spent together. I don't know what I was expecting, perhaps a little indifference or jealousy on Kaylen's part, so needless to say it was an unforgettable moment, watching her instantly fall in love with her baby sister. I guess we took for granted, that she too, had been anxiously waiting to meet this person we had been talking about for so long. And what a meeting it was! These pictures are a little dark, as they were actually taken off of our video camera, but I am so thankful that we captured these moments. Even though they are forever written on my heart, and I couldn't ever forget that amazing day, these images still bring a smile to my face and tears to my eyes.

I guess God knew that Avery would need an especially loving, patient, and empathetic big sister and he choose the perfect little girl! Kaylen is Avery's biggest cheerleader, best friend, and fierce protector. What an incredible bond these two little people share and how lucky are we to witness it every day?

Story Time with Daddy

2008-04-10T12:59:00.000-07:00

Avery is usually in constant motion. . . running, climbing on a chair to get to a kitchen counter, getting on and off of the beds to bounce, so it is interesting that one of her favorite things to do (when she's not running full speed ahead) is to sit down and look at books. It's even better if she can find someone to sit down and read with her. She loves to turn the pages and point to the pictures and have you tell her what they are. We treasure these "quiet moments."

This is a good one, Daddy!

Read it again!

Long time

2008-04-09T10:54:00.000-07:00

no blog! Wow, time flies when you're having fun I guess. I haven't found a moment to sit down and add to this little blog, and that's a bummer, because we've had lots of fun these last two weeks. We've also being going through a really rough time with Miss Avery and her health issues, (for more on that for you random 'blog stalkers' go to www.carepages.com enter page name LittleMissAveryUpdates exactly.) So for today I'm just going to leave you with some great before and after shots of Miss Avery's first real haircut!

Before (obviously)

Can you say CrAzY HaIr?! It was a two bottle kind of day!

You didn't tell me we were doing a photo shoot today!

I would have done something with my hair!

Cheese grin! Such a goofy girl.

After

Ahhhh, so much better! Can you say c.u.t.e.?

Stay tuned for more fun from the Hart house! Things seemed to have calmed down for the moment, and I'll be updating lots of fun pics in the next couple of days!

Princess Wishes

2008-03-27T21:23:00.001-07:00

The highlight of Kaylen's first Spring Break was going to KC to see Disney Princess Wishes on Ice with my friend Amy, and her kiddos, Dalton and Kierstin. Kaylen is still a huge Disney Princess fan, and this was something she had been looking forward to for a long time! Each Disney Princess came out on the ice at some point and acted out parts of their stories. It was so much fun! I am so thankful that Amy invited us to go with them, and got us such amazing seats! We were three rows up from the ice! Kaylen and I don't get to spend a ton of time together by ourselves, so this was a special treat! Here we are after the show, waiting to see the Easter Bunny at Crown Center!

Remember the silverware from the Beauty and the Beast. When the handsome young prince refused to help the old beggar woman that stopped by his castle she turned him into the Beast and cast a spell on all the servants in the castle, turning them into enchanted, talking objects. We got to see Luminere, the candlestick, and the silverware skate with Belle. Can you imagine ice skating with a giant spoon, knife and fork on your back?

And of course it isn't "Disney" without Minnie and Mickey!

Here's my little princess, tiara and all, enjoying some Dippin' Dots during intermission!

Tinkerbell walked right below us on her way out, in between the differentPrincess' performances. She introduced each act of the show.

During Sleeping Beauty's act, this gigantic dragon came out onto the ice and fought the Prince. This was hands down, Dalton's favorite part of the show (I'm so glad there were pirates and dragons for the brothers who went with their little sisters!) Kaylen said that this was her favorite part as well, but I'm wondering if she just wanted to echo Dalton, because she looked absolutely terrified when it came onto the ice and had a death grip on my hand!

The show got even more intense when the dragon then spit fire onto the ice! The kids were beyond amazed and even Amy and I were like, "how'd they do that?"

It was so hard to get good pictures, because for one the skaters are moving really fast, and all those little white specks you see in the background are really the camera flashes from the people across the arena that are also trying to get an "action" shot! My camera couldn't figure what to focus on or rather to flash so I finally turned everything "automatic" off, and switched to manual and the pictures turned out a little better. (I don't have a fancy camera- yet- just a little Sony Cyber-shot.)

This picture of Ariel (which I zoomed in on in the second picture, ) gives you an idea of how close we were sitting! We could almost reach out and pop the bubbles you see in the close up!

Of course no Princess show would be complete without Cinderella and The Prince himself!

Towards the end of the show Cinderella's carriage came out on the ice!

The grand finale! The center of the carriage rose above the ice with Tinkerbell inside (look closely), and there were tons of fireworks! We were "oooohing" and "ahhhing" in time with the rest of the audience and were simply amazed! Leave it to Disney to do it right!

It was such a wonderful show and so fun for Kaylen and I to spend some 'one on one' time together! The funny thing is, I can almost guarantee that years from now, what Kaylen and Dalton will remember most, is that on the way home from lunch we got stuck in an underground parking garage traffic jam for almost thirty minutes! It was CrAzY! The fumes from all the cars idling, and the low ceilings just about did me in! People were honking their horns like dueling banjos and after much cajoling from the backseat, I finally joined in! Only I didn't just give a little "honk," I got creative and honked a tune. It goes a little something like this. . . honk. . . honk. . . hon-hon-honk. . . . HONK, HONK!

Fajitas, Margaritas, and a Deer! Oh My!

2008-03-21T22:46:00.000-07:00

As I mentioned in my last post, I was looking forward to meeting up with my three favorite teacher friends from my past life, to enjoy a girls' night out, some Mexican food and a couple of Margaritas. We had such a fun night, closing down On the Border, albeit ten o'clock. (I know we're wild and crazy!)

My dear friend Mary and I rode together, and she graciously offered to drive her van, making her my DD by default. We had been on the highway on the way home, for just a few minutes when completely out of nowhere a GIGANTIC deer was suddenly in the middle of the road. Mary did an amazing job of keeping calm and breaking hard, but alas, hit the deer (in the headlights) head on. There was no way to avoid it. All I saw was a flash of brown fur, two big glowing eyes, and then the inside of my own eyelids as I not only closed my eyes, but also covered them with my hands like a little kid during the scary part of a movie. When I finally opened them I saw a snowstorm of fur raining down and poor, poor, Bambi flying through the air.

I think the next few seconds went something like this:

Mary: "Oh crap, I couldn't stop. I couldn't stop, I had to hit it. Did I do the right thing?"

Me: "It's o.k., it's o.k. Oh my gosh, you did a great job. We're o.k. Oh my gosh, do you think he's dead? Oh, please let him be dead!"

Mary: "Uhhhh. . . . ummm. . . . nope it's still moving it's head."

Me: "Shhhhhh!!!!!! Don't tell me that!"

So we get out of the car, and it is then that I realize how thankful I am that my legs and arms still work, nothing is broken, and neither of us have even a scratch to show for the last fifteen terrifying seconds of our lives! I wish I could say the same for Mary's van.

Notice the deer fur still stuck the the grill. Can we say road kill? Please say a little prayer for Mary, as we all know that having your car get way laid by a deer, is a big hassle, not to mention expensive!!

This was just another adventure on the highway with my dear, or should I say deer friend Mary! Thanks for keeping us safe girl!

It's beginning to look a lot like

2008-03-18T20:39:00.001-07:00

EASTER! You would never guess by the weather outside that Easter is just days away, but it is and we are ready here at the Hart house! We had a lot of fun dying our eggs last weekend to get ready for the Easter bunny's arrival! As I was posting these pictures I realized another clue that Easter is indeed early this year - Kaylen is still wearing her flannel snowman pajamas while dying eggs just a few days before the big day!

Look closely at the expression of wonder on Kaylen's face as she fishes each egg out of it's cup of dye and sees that somehow the Easter Bunny has written each of our names on our Easter eggs! It's magic!! (see below)

The finished product!

How did he do that?

I saw this 'easter egg tree' advertised in the Pottery Barn catalog and fell in love with it. Alas, it was fifty bucks!! So Kaylen and I got a little crafty and whipped up one of our own. It was super easy and lots of fun, and as you can see below, turned out pretty darn cute if I do say so myself!

Kaylen and I are both very proud of how our version of the fifty dollar easter egg tree turned out, considering ours cost less than ten bucks! We found these adorable glittery eggs in sets of six for a dollar at the Dollar General store! The picture just does not do this project justice! It's very glittery and sparkly and so much fun!

Happy Easter!

Home Alone

2008-03-15T14:39:00.001-07:00

Agggggggghhhhhhhh!!!!! I've been 'home alone' for two days! This is the first time in several years that I've had the house all to myself. Daddy took the girls out to Grandma's on his way to a conference and I headed to Olathe to have a girls night with some other TSC moms. It was a fun evening, and even though I got home a little later than I had planned, I got to sleep until almost TEN O'CLOCK this morning! It was so odd to wake up to a quiet house, and not have oatmeal to make, chocolate milk to mix, and meds to give. I have enjoyed these last couple of days by myself, cleaning, reading and catching up on some other blogs that I read. But now, I'm missing my babies and am ready to hear that car pull in the driveway!

We have a busy week coming up. Kaylen is on Spring Break and we have lots of fun plans. We aren't officially going anywhere, but we will get to catch up with some old friends in KC for play dates, and Kaylen gets to go to Disney Princess on Ice next week. She is really looking forward to that. I get to have another girls night out in the middle of the week, with my best teacher friends that I miss dearly! The four of us are going to plan our upcoming 'road trip' to Branson to visit our friend Audrey who moved there and do some serious outlet shopping while we're at it! (Two girls night outs in less than a week-what will I do?!) We also plan to just "veg" out with some movies, dye some easter eggs, and maybe hit the bowling alley again to see if we can improve on our scores from last time!

Have a great weekend!

Conversations with Kaylen. . . Arguments with Avery

2008-03-13T11:48:00.000-07:00

Kaylen from the backseat: Mommy I really want to get a cat. When can I get a cat?

Me: I don’t know honey, someday.

Avery: Moooooooo!

Kaylen: No, Avery. A cat, not a cow! But mom, Allison has a cat and he’s soooo soft and cuddly.

Me: Cats are a lot of work honey.

Kaylen: I know, but I would take care of it, and I’ve always, always wanted a cat.

Avery: Mooooooo!

Kaylen: No A-VA-REE-UH!!! (When Kaylen gets annoyed with lil' sis, she adds a couple of syllables to Avery’s name.) A CAT, not a cow!

Avery: Mooooooo!!

Kaylen: Fine Avery, if you want a cow so bad, go live with Grandpa. (Who raises cattle)

Avery: Meow?

Never say never

2008-03-12T12:15:00.000-07:00

Apparently we misunderstood this part of Dr. Doom and Gloom's speech the night Avery was diagnosed with TSC, "She will most likely never walk. . . " Lately it seems Miss Avery is always walking (or running) away from me! This is the first time she has walked up stairs at the park by herself. You go sweetie pie!

Photo and video editing at www.OneTrueMedia.com

I Dare You

2008-03-11T17:17:00.000-07:00

to watch this without laughing. I've seen this video on the Ellen DeGeneres show twice now, and it still cracks me up. You will never say the name "Charlie" the same way again!

Think about it Thursday

2008-03-06T08:14:00.000-08:00

One of my favorite morning talk shows is The View. When I first began my new career as a domestic engineer aka stay at home mommy, I would skip right past it because I thought it was kind of like Oprah for old ladies. Then they added some really fun gals, and got rid of the really annoying ones, and now I'm totally hooked. So yesterday they were talking about the latest American Idol scandal. Now I don't watch Idol, but apparently one of the guys that is doing really well on the show used to be a stripper. The View gals were discussing the fact that some people feel that they have to strip to pay the bills. Then one of them posed the question, "Would you take your top off for five million?" Think about it. Or if you're like me, you don't even have to think about it. It's a no-brainer, or a no boober as the case may be. Write me a check for five million and the girls are comin' out! Now this may come as a shock to some of you, and rightly so. I'm an extremely reserved, conservative, modest gal. But for five million dollars? Hello! Cue the music, dim the lights. . . My friend Bethany and I were discussing this, and she too is extremely modest, but seriously, five million dollars? We did discuss the possible scenarios and stipulations. Are we taking our tops off for the entire world to see, or just a few people? Under what circumstances are we unveiling the twin peaks? I don't know, but I'm not totally sure it matters! Five million bucks ladies! I know, I know. I wouldn't want Kaylen to "strip." And there's the whole dignity issue involved. . . but five million dollars buys a whole lot of physical, speech, and occupational therapy, spendy drugs imported from Canada, and cute outfits from Gymboree. So if you're reading this and your jaw is still on the floor, first of all pick it up. If this post has changed how you think about me, well then you didn't know me all that well to begin with, and oops, you're on the wrong blog! You should be on the G-rated version of "a day in the life with the Harts" found at http://www.carepages.com/!

Now this should get some discussion started! And it really puts a whole new spin on the thought of a girls weekend away with Lisa, huh Mary? Giggles! It's Thursday, think about it.

Conversations with Kaylen. . .

2008-03-05T08:27:00.000-08:00

Kaylen: So mommy, what are you going to do today while I’m at school?

Me: Oh, you know, play with Avery, clean up this messy house.

Kaylen surveying the mess: Mommy if you get some of this mess cleaned up before I get home, I will give you a surprise!

Me: Wow! Thanks sweetie! I’m going to get it ALL cleaned up!

Kaylen looking doubtful: Mommy if you get ALL this mess cleaned up before I get home, I’ll give you two surprises!

Me: You’re on! What kind of surprise do you have in mind?

Kaylen who like her Daddy has NEVER kept a surprise dishes: Like five minutes of free time on the computer? Or maybe ten pennies out of my piggy bank? Did you know that ten pennies makes a dime?

Me as we arrive at school: Yup that’s right! O.k. you have a great day at school and work hard o.k.?

Kaylen: You have a good day too mommy. . . . (yelling back as she gets closer to the front door of school) GOOD LUCK CLEANING UP OUR MESSY HOUSE!!

That’s’ my girl. . . .

And about the hair, it's "Wacky Wednesday" at school today, so we came up with this cRaZy hairdo!