Pray for Avery

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

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?

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

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

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!

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

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!