Skip to main content

Rare Disease Day!

Today is Rare Disease Day.

Nope, it's not a coincidence that it's on February 29th!

As the mom to an adorable little girl with a pretty darn rare disease, I can tell you that it is ridiculously hard to deal with at times.

You're constantly educating doctors and breaking down the walls around those doctors who don't want to admit they've never heard of the blah-blah-blah syndrome you just spouted off.  Repeated internet searches are in vain because there's never anymore information.  There's no expert...oh wait, that's you!  You, the mom, are the expert.  Nobody can tell you what to expect at each stage because no two cases are alike and your child is pretty much one-of-a-kind because she doesn't have a primary diagnosis to cause this crazy-rare disease.

But then, it can also be pretty cool to know that God has entrusted you with such a wonderfully special little girl.  He knew that it would be tough and that there would be a lot of challenges to overcome, but He also knew that this gift would forever change your life and the way you think about everything.


So, Happy Rare Disease Day to you!  If you can, take a minute to thank God for giving Abby such a rare disease that has opened our eyes to a whole new world.

Comments

Mary Lou said…
Happy? Rare Disease Day, Julie.... You have such a strong and courageous attitude!! I like it!! ;)
And.... Happy Leap Day, too!! ;-}

Popular posts from this blog

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 never wi

The Potty Man

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!

Lego Party: Favors

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