Skip to main content

Another milestone

Image
By
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!
Labels:

Comments

Mary Lou said…
Abby....
Happy, happy, happy birthday, you Beautifully Unique, fearfully and wonderfully made, precious little girl!! Five years.... What an incredible milestone!! God is so good!! Here's to many, many, many more years of loving Life!! ;-D
Julie....
Thinking of you today.... Hang tough, Mama!! ;)
Love you later, Raelyn
October 22, 2015 at 12:17 PM
Post a Comment

Popular posts from this blog

Cerebrocostomandibular Syndrome

By
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 never wi
10 comments
Read more

The Potty Man

By
Caleb LOVES to go potty! I have never heard a potty training story like this one....Caleb tells us when he needs to go, we take his diaper off, and he goes! Now, is it perfect? No, not at all! We aren't trying to potty train at at all, but we figure every time he goes is one less diaper we have to change! The only time we consistantly put him on the potty is when we give him a bath (he always pees in the tub, so we know he needs to go!) He almost always goes on the potty now instead of the tub though. When he's not "really" going potty, he's pretending to go potty! He's such a funny kid!
1 comment
Read more

Lego Party: Favors

By
I'm a little slow in posting the Lego Party pictures, but I think I have a few excuses I could use.  At any rate, I wanted to share what I did for the party!  It will take a few posts, so stay with me.  I'll start with how I did the favors. These are the goody bags I made.  I just bought solid colored gift bags and matched scrapbook paper to each bag.  Then I punched circles and attached them with the 3D foam tape so that the circles were raised. I used the keychain (explained below) as a name tag on the outside. These are Duplo blocks.  I put a round magnet on the back and...voila!  A magnet!  (note:  hot glue doesn't work so well...I ended up reglueing them with my apoxy because the magnets fell off.) I made crayons using Lego man crayons.  Yes, I know this guy has lost half of his leg.  The others were already packaged and I didn't want to open one up just to get a picture.  I used a Lego mold  to make the crayons.  Caleb put small pieces of crayon in each m
1 comment
Read more