Life as a Leach

Abby's story was shared today on the Global Genes Project's blog.   You can also see a feature on their Facebook page.  This is exciting because it is one of the biggest proponents of rare disease awareness and research with a huge following.  They are pretty respected in the medical community.  They have a looooooong list of rare diseases, but guess what was not one of them?  (It is now!!)  My hope is that Abby's story aids doctors, geneticists, nurses, etc. in diagnosing CCMS in infants.  Even more, I want her story to give hope to families who might be facing CCMS!

 The whole role of the geneticist is to point out every imperfection your child has.  It's pretty nerve-wracking to hear them discuss the measurements of her bridge span across her nose and the disproportion of her chin to the rest of her head.  In fact, it's never  fun to hear people point out the imperfections of your child.  You know what? This is Abby. That too wide bridge across her nose crinkles in just the right way so that you can tell she is smiling even without looking at her mouth, and it is adorable. This is Abby. Her tiny head is so sweet as it nestles against me.  I love to kiss the top of her wild brown hair as she's snuggling. This is Abby. The smile that spreads across her face may reveal a future of dental work, but every beautiful smile I receive is a gift that I do not deserve. This is Abby. Her raspy voice forcing out, "Hi Momma!" when I walk through the door is the sweetest thing I've heard all day. ...

My daughter can't say "I love you," But she has a lot of other ways to let me know. I see it when she holds up her fingers to sign it, in the way her brown eyes crinkle up at the corners when she smiles, and when she claps excitedly when I walk in the door. It's obvious as she crawls toward me and climbs in my lap, when she puts her hands in the air for me to tickle her under her arms, and then as she starts laughing before I even touch her. There's no question when she gives me sweet little hugs or pat-pat-pats my back, and when she wrinkles her nose at me. I know what she is saying when she blows me kisses and plops down on me with a thud, or when she places her little pudgy hand in mine. No, my daughter can't say "I love you," But she doesn't need to. She tells me every day.

I was asked to write this list for the MOPS group I'm a part of.  It was included in a packet about manners and etiquette for children in various situations.  I'm all about taking the fear out of interactions with my child, so I whole-heartedly agreed! I didn't want the list to just be based on our personal opinions, though.  I checked around on the internet and got a few ideas, but most of my research came as a result of a poll of a special needs group I have joined.  I asked them what they would like to tell people to do or not do when dealing with their special needs child and his or her family.  Let me tell you, the response was overwhelming!  50+ people responded with multiple suggestions.  This is obviously a hot topic for special needs families and one that definitely needs to be addressed. Therefore, I decided to also post the Top 10 list on here.  I hope that it helps you know how to teach your children how to interact with ...

For several months now, we have had the pleasure of talking about our story with a young journalist.  She heard about it through a friend of ours she worked with and got our contact information.  "A" is in a journalism master's program and originally interviewed us for an article she wrote for a class.  Now, she is doing an internship at CNS  and called us for permission to write our story again...this time with a different focus.  After lots of emails and phone calls, the final article was sent "out on the wire" (that's newspaper-speak for ready for publication...aren't I fancy?!) and to our surprise, it was picked up by Fox news!  Here is the link: http://www.foxnews.com/health/2011/11/04/after-grim-diagnosis-parents-turn-to-internet-social-networks/ Our sole reason for agreeing to the article was that we would be able to share the miracles God has performed in Abby's life and point others to Christ.  We hope that if you have found the blog a...

In light of our medical bills and at the encouragement of many of you, I have decided to try to put my writing skills to work.  At times, I might be writing a review of a certain product or website.  These will be sponsored by advertisers and I will be paid.  I am required by the company I am working with to write a disclosure post so that everyone knows.  If this bothers or concerns you, please know that I am in no way trying to make money off of our current situation.  I hope that by now you can feel the depths of our love for Abby through my writing and we would much rather be a boring, normal family!  God has other plans for us though and I am actually hoping that taking this avenue gets our story out and that we can be an encouragement to even more people!  I am learning that God has given me the gift of writing and if I can use that to help ease our financial burden a bit, I figure it is worth a shot!  I will not accept any advertiseme...