Thursday, July 28, 2011

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 will be.  I'd much rather live a boring life...but God prefers to make it interesting.  :)  So if this is the life God has given us, then we want to live it in a way that points others toward Christ and encourages others with our story.

Where am I going with this?  I feel like I'm rambling.  Oh yeah, back to the article.  It's an interesting read and I certainly feel a strong connection to this family...after all, there are only 6 kids in the world with the syndrome!  I'm glad that the word is being spread about CCMS.  Check out the article if you haven't already and feel free to share your thoughts with me via email! 

8 comments:

Anonymous said...

It seems like Piper's parents have made very different choices than you and Matt. I am always inspired by the dedication you have had for your family. Choosing to bring Abby home has meant a great commitment on your parts but I know you would have never had it any other way. I feel Abby has made the growth she has made because of your choices.

Anonymous said...

Piper Jane is not as stable as Abby, and because of that home care really isn't an option for her. I am positive that the Breinholts would bring Piper home if they could. Abby is a miracle, praise God for the work he is doing in her little body! We should also be praying for PIper, another little miracle, that one day she would be able to live at home with her parents. Good job Leaches and Breinholts!

Anonymous said...

O.K. I just came from Regan's blog where she lists all the things she wants to do before the summer is over. Take a look:

http://www.reagansblob.com/2011/07/summertime/#comments

Do you see any mention of wanting to spend time with Piper? Just saying...

Anonymous said...

You & Matt are amazing parents... and Caleb is an awesome big brother! Your dedication, grace and humor are truly inspiring. I would say that Abby is going to do great things one day, but she already is. My faith is strengthened by your story!
Jamie T.

Anonymous said...

Lets not be quick to judge people we don't know.....unless you've walked a mile in their shoes.

God Bless Piper, Abigail and their families.

Anonymous said...

Wow - just read the Readers Digest article about Piper and checked out Reagen's blob. I do have to say that after reading Reagan's blob and comparing it to Julie's, there is a Huge difference. Julie - yours is filled about Abby and Caleb, your husband, Matt, along with your love for the Lord. Reagan's is more world centered. The djfference comes across in a huge way! I thank you Julie for sharing your love of God and your family. Anyone that happened across this blog sees very quickly just who and what this family is about. I'm serious here - what you convey in mere words is amazing. You go girl! - Jane Benitz

Jenna said...
This comment has been removed by the author.
jenna0mae said...

Come on, people... You have to realize that what people write on their blogs is not everything they think about, care about, and do. Judging people in such a challenging situation is so cruel. How do we know what we would do in that situation? We don't have all the facts--just a little snapshot into a life.

Do you know that if you google the Reader's Digest article, this is one of the first links that comes up, and your comments are out there for the world to read--including the people who you are writing negative things about?

It would break my heart if on top of such a challenging life situation, I knew strangers were out there writing mean things (thinly veiled as compliments to a different family) in such a public forum.

I wish the best for Abby and Piper, and I think blogs like this do a GREAT job of making connections and developing relationships around a rare medical condition. Let's keep it supportive for everyone and remember the internet is a public place.