Saturday, January 3, 2015

Meet my family...

BUT until then - I wanted to share with you my family. Who's excite? Raise your hand. Wait... are you wearing deodorant? 
I have 3 lovely children... Lily just turned 7, Reese is 5.5 and caleb is 3.5. The last time we had family photos... ah it's even hard to think about. Caleb was a newborn... just 3 months old and we were moving to ENGLAND. Hopping the pond to jolly ole England straight from California's San Francisco Bay. Mr. Burlap Button had gotten the opportunity for a position there at RAF Lakenheath (He's in the Air Force) and although I was 9 months pregnant at the time and he was in Washington DC for the month (aka I was a huge, beached whale running after 2 kids alone!) we made the decision to go! Ohhh I was dreaming of European travel, the English countryside, fresh-farm-foods and fabric... OHHHHHHHH European fabric. 
We shipped our whole house, our car... just about everything we owned except our 3 suit cases and car seats - well and our children... all via a barge to England! We loaded our bags and headed to Texas and then North Carolina to vacation with our family before we headed off onto our next adventure. It was during that time that Caleb had his first infantile spasm.... Our vacation family vacation to kick off our big adventure went spiraling down in flames. Caleb was diagnosed within a few hours of arriving at the ER with a rare genetic disorder called Tuberous Sclerosis. It's not a curable disease.. one that involves a mutation in his genes and developed from the time he was conceived. He has benign (mostly) tumors that have formed and grown into almost all of his major organs. He has 12-15 brain tumors, kidney tumors that have yet to develop, skin tumors and heart tumors. Talk about a crushing blow... 
We had family photos set up for that week. We showed up anyway... put on a brave face and that was that.  That week was so hard... but it was nothing compared to the weeks and months and years that followed. It's never something you comfortable with per say... but you do get accustomed to dealing with it. You learn the worlds of hospitals (as a nurse... I know it well - but now I walk the halls as a patient/parent)... you know the pharmacy's number by heart... you stop thinking about vacations and dreaming about the "what ifs" because your "what ifs" become much scarier than the dreamy things you used to ponder. You realize the heavy weight of day-to-day things because all of a sudden they don't come easy anymore. There is a lot of planning... a lot of sacrifice... a lot of sweat and tears that go into just trying to be "normal" AND because of that - we haven't had family photos since that week in July when Caleb's future ... our future as a family forever changed. 
NOW before we start getting all sad - let's remember why I started this post :) To share my family. NOT that picture from over 3 years ago BUT to share the photos from just a few weeks ago ;) My baby boy is starting to look like a big boy. He has endured COUNTLESS hospitalizations and EEGs and MRIs and scans and blood draws and doctors appointments... he has had one brain tumor removed, one G-tube placed and conquered more seizures (on a daily basis...) than you can imagine AND LOOK AT HIM. 

He lights up a room. He lights up his mama. He makes friends wherever we go. 

He laughs when he's tickled. He loves to be tossed high into the air. He loves to play with balls, play outside and swing in the swing. 

He loves his Daddy. 

He's a mama's boy. 

He lives life in full color despite the circumstances that should make us all blue. 

And my girls. OH my girl :) They are quite possibly the best big sisters one could hope for! 

But THIS man. Oh this man - he stole my heart 8 years ago and without him - I None of it. 

Thank you Jesus for my family... 

AND for these photos... and our photographer (low-res and unedited photos shared here).. and for our readiness to capture these photos amidst a life that is and will never be perfect. 

We never made it to England. But the Lord brought us to NEW England where we had the medical care we needed and the support we longed for. We were instantly surrounded by a wonderful church, fabulous friends, amazing doctors ... even though our adventure was drastically different than planned. 


  1. I feel like I already "know" your Such a neat story behind the fun and spunky Kristi. Thanks for letting us follow along. :)

  2. Beautiful! Love you and your story!

  3. You have a beautiful family! I'm blessed to call you my friend and to have been able to know all of you. HUGS!

  4. Love this family! Wish I could meet you all in real life.

  5. Some day Kathy :) We sure do move a lot so the probability is pretty high that we'll be close enough some day!!!
    The girls and I are working on the new dress ;) NOT a new pattern. i have several of those in various stages that will make it out some day (or not) but a new BLOG post

  6. Thank you Kristi and Crystal and Ina!!!