No longer alone

My sweet boy was born April 29th, 2010 and I wrote my first blog on here in October 2011.  Months of distress, confusion and doctors led up to that first blog.  Months of tears holding my infant child not knowing how different he was on the inside and what answers we would find as I pushed.  We continued asking questions, researching and doing tests.  It was expensive and exhausting, but I feel confident now that we at least know what his bone structure looks like and have a baseline to compare as he grows and his body begins to change.

We are now on the cusp of Thomas' 5th Birthday.  Wow! Five wonderful years with this ball of energy!  He might have been early, he might have been slightly delayed but as with anything where Thomas is concerned delay means nothing.  It means, I'll catch up and surpass.  Watch me!  He is now an extremely active, talking nonstop, preschooler who is extremely smart and loves trains and the color blue.

When this blog began, I stated time and time again that I had no idea the direction I was going nor the purpose but that I felt like I was being led to write it.  So I did.  I wrote and wrote.  I went to doctors and then I would come home and write my blog collecting my thoughts and processing along the way.  I felt like it was an easy way to share with family and friends the difficult and complex world of uncovering a rare genetic disorder that my son has.  It seemed easier to collect support and prayers by writing it out and sharing it on media outlets.  There was no group of parents to gain support from, there was no foundation (still isn't), no 5ks and there isn't any medical expense help out there for children like Thomas.  Parents like us are on our own.  Or are we?

Well, since writing this blog there have been Facebook groups formed just for people with Klippel Feil Syndrome, just for Parents of kids with Klippel Feil Syndrome, there is a group for Duane Syndrome and more.  We can talk about tests and compare children's abilities and doctors.  It is through these connections that I was able to get Thomas seen by the amazing doctor in Cincinnati.  I still have moms and grandmas who are just finding my blog through their own research and reading my words for the first time.  I get amazing emails and thank yous from those parents searching for hope.  Through my blog, through Thomas' story, through the sharing of information and real life experiences we have given the gift of hope.  We have made connections for life and will always have each other to help navigate us into the future.

There is another mom sitting down at her computer, holding her baby, looking for answers and my prayer to her is that she will find hope and peace.  There are a lot of scary things and terrible possibilities on the Internet, so I do pray that while I am no doctor, no special foundation but a ray of hope for many.

Thomas is a gift from God that was meant to be shared and not kept hidden.

“For I know the thoughts that I think toward you, says the LORD, thoughts of peace and not of evil, to give you a future and a hope.” Jeremiah 29:11