Tough Days

Life has kept us busy.  I haven't had a clear enough head to put into writing the things I am thinking.  I find more often than not, I am speechless.  There is so much going on in this mind of mine, but I can't separate it all enough to pull it into a complete thought.  Thus my lack of posting.

If you are a faithful reader, you know our story.  You know the pain and heartache we've endured over the last few years and how it's stretched us to do and go places that we would have not chosen on our own.  This last week threw our family another curve ball.

My sister-in-law delivered my precious niece, November 24.  Little Miss Charlie Dawn melted our hearts with her dark hair and tiny little cry instantly.  Very soon after her delivery some minor problems landed her in the NICU, but as the day went on, many more concerns and questions were raised.  When it was clear the NICU she was in wasn't capable of running the tests she needed, the decision was made to transfer her to a well known Children's Hospital in the area.  Test after test, and question after question, we finally had some answers.  Sadly for us, answers no one was prepared for.

Charlie will face life long struggles, because of an issue with her brain.  We find once again how very fragile life is, and how little control we have in life.  As she was growing in the very early days, her brain did not completely split into two hemispheres, causing her to have a condition known as, Semilobar Holoprosencephaly.  What it comes down to is there is damage to her brain, and it may take a while before we know the severity of this problem.  She is struggling to eat, and that is what has her still being held hostage in the NICU.  Sound familiar?  Eating issues always, always keep babies stuck the longest in a place like a NICU.

Her family is doing well, but they all have a very long road ahead of them.  There is so much uncertainty surrounding Charlies' development.  She likely won't walk, or talk, but there are stories that offer some hope that she will be able to show she understands what is happening and will learn to communicate somehow.  She may end up with a feeding tube in her belly.  She may very likely develop seizures at some point in her life.  Most importantly though, after all the scary scenarios are painted, she may be the exception to some of these things.  We just don't know. 

Right now she is just a baby, and like every other baby, she needs love, care, and support.  She is a beautiful gift, and I know the bigger picture is more beautiful than we could ever imagine.  We are asking for prayer, and to help offset costs of care, we have set up a page for donations through the not for profit, Sparrows Heart, we started in memory of our two angels, Johnny and Claire.

If you feel led to give, please do.  You can find the donation page here: http://sparrowsheart.org/fundraiser-for-charlie-dawn/

Charlie also has a facebook page that has more updates on her condition.  I know the family appreciates people sharing her page, to get the word out.  The more prayer the better in our eyes.  We all are so grateful for the support.  https://www.facebook.com/CharlieDawnRinard

As you see, the hardship has hit close to home once again.  Our hearts ache for them.  Charlie is a very special girl, and is so very loved.  Please share.