Thankful...

Thankful today... Emma is just about 9.5 years old. I can recall the moment I first learned the term...  It was on a script for an MRI from a new neurologist we had seen at CHOP.  He didn't say anything about it in our meeting, but after the day was finished and I had Emma to bed and caught up on work that I missed while out for the day at doctor's appointments, I read the script... and saw the word that would change me life... forever and in so many ways.

I didn't know the term and didn't think about it's origin as I plugged it into Google.  What I found sent me reeling...after reading the National Institute for Nureological Disease and Stroke (NINDS.org) and reading about poor development and low lie expectancy, I found pages and pages of memorial sites for children who didn't live to see 9 years of life. I thought we were going to loose her. I thought my daughter was going to die.

It was a devastating and terrible time for me. One I did not share openly as I struggled with what I had learned and feared to come.  It took over a month of research to find an online support group for families dealing with microcephaly to realize we wouldn't loose Emma.  Oh, how incredibly thankful I was!  My baby was going to live!

I came to learn those children whose memorial sites I had visited had micro and other complicating health issues. I can't imagine how their families must miss them.  I still carry around their memory and try to hold up their families knowing that their bodies and whole and well now.  I pray they all meet again in an amazing celebration one day.

And so, just as the National Microcephaly Day has passed, I am reminded again of those children and ours... I am so incredibly thankful for our sweet daughter who has wonderful health and whom we have been given to enjoy and celebrate life.

Thank you Lord for Emma's continued good health! And, thank you for Emma!

Eternally grateful,
Lynn

For more info on families and children who live with micro, visit their site at http://www.childrenwithmicro.org/index.html

PS - We started a letter campaign to NINDS as other families came to our online support group with the same horrific fears as I did... we got them to change the description so that other families wouldn't have to experience the same things we did.  I guess that is what also got me started down this path... knowing that 1 person really could impact things.  That person could be you too!  : ) 

PSS - I share some of this on FB too and the responses and encouragement received there is what brought me here to share it more publicly... I pray it does someone well...  <3 Lynn