Another milestone

In just 2 short hours, my miracle will turn 5.

Five.

FIVE!!!!!

This is another milestone to add to her journey, and it's one we haven't shared as publicly.

There are lots of statistics about kids born with rare diseases. Here's one that is pretty crippling if you let it be:

Yet, here we are, with a little girl full of zest for life and more joy than I could have ever imagined!

I will never forget when Caleb found this sheet (it's a Rare Disease info card published by Rare Genes) two years ago and comprehended what it meant. He brought it to me sobbing, asking if Abby was going to die before she was five. My answer has always and will always be that we are thankful for every second and God knows exactly how long we will have Abby.

I'm so grateful for these last five years. I am a different person because of them, and I wouldn't change a thing.

Abby's birthday is always a bittersweet day for me, with a touch of PTSD thrown in there. There are so many emotions wrapped up in this day. We are, of course, joyful that our girl is doing so well!

But this is also the day that we received her devastating diagnosis, the day we were told she would be little more than a vegetable, the day I walked into the nicu and had to ask the nurse which one was mine because I'd seen her for only 2 seconds, the day we saw those rib Xrays and knew something was horribly wrong, the day a Fragile: Do Not Touch sign was put on my daughter's isolate because they didn't know how delicate her ribs were, the day we read the death sentence that described CCMS, the day we sobbed over the prospect of losing our little girl.

So while Abby's birthday is most definitely something to celebrate, it is also a tough day for me. Tomorrow is the first time I've ever had to work on her birthday, and I'm wondering if I'll be able to hold it together. I usually spend half of the day crying as the memories flood in!

But I am SO thankful that at the end of the day, I get to come home and celebrate this precious girl's life. Thank you, Lord, for another year!

Cerebrocostomandibular Syndrome

If you happen to pick up the latest Reader's Digest, there is an article in there about Piper Breinholt , a four year old with CCMS. If you've been around here a while, you'll remember wayyyyyy back when we first received Abby's diagnosis that I was able to speak to Piper's mom, Reagan. The article is more about their story and not as much about the ins and outs of CCMS, but I think it's probably enough to get some people googling it and I'm hoping a few will end up here. Every once in a while, I give a blog post the title of Cerebrocostomandibular Syndrome so that it would show up in Google. My ever-present hope is that people will stumble across my blog and 1) be encouraged by the hope we have in Christ, 2) feel a connection with someone in a similar situation as them, or 3) get excited over the miracles that have been performed in Abby's life!! (a combination of all 3 is great too!) :) Notice that it's not to get famous and it ...

Bath Time Photos!!

As promised, here are lots of photos of Abby's first bath. Caleb was supposed to be in bed, but the bathroom is right next to his room... "I'm not too sure about this..." Once she learned how to splash, she was all smiles! Her first good hair wash! Gotta protect the trach! She really liked getting water poured on her head. It was cute! Smiley (and bubbly) for Daddy while he dried her off. All clean!! (Note the Lysol wipes in that last picture. They are NEVER far away!)

Imagination Movers Photo Recap

Seriously, The Imagination Movers were so much fun! They played lots of their own music, with some classic rock mixed in for the adults. There were also quite a few jokes and references to Baltimore, which was kind of fun. The whole night centered around this robot named Rock-o-Matic, or "Rocko." This is Mover Scott, and he wears Wobble Goggles that help him see new ideas. Caleb and Abby have a pair of goggles too. :) There are 4 main Movers that are part of the TV show, but they have 2 extra movers to play instruments and do back-up vocals in their live tour. Abby finished up her feed before the show started so that she would be free to dance! My dancing queen did NOT want to sit in my lap. The row in front of us was empty, and that is where she stood almost the entire show--dancing the night away. My Imagination Movers Caleb did his share of singing and dancing too. He knows m...

Life as a Leach

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