The Window is Open

We don't tell people our son has down syndrome.  Oftentimes strangers will ask why he has a feeding tube, why he needs therapy.  We tell them that he had a congenital heart disease that affected his energy and he is learning to eat again now that he can.  Some may criticize us for our decision, accusing us of being ashamed of his diagnosis.  But that is it, it is just a diagnosis, it is not who he is.  We have chosen not to tell people because James is James, he is not his diagnosis and, sad as it is, in our society that diagnosis often comes first.  Of course, should someone ask we are not ashamed to tell them of James' genetic condition, but it is not information that needs to be proffered.  To be honest, I mostly forget about James' genetic makeup until a doctor or therapist says the dreaded, "that is because of the down syndrome."  Sure, it is not bad to connect his medical conditions to his genetics, oftentimes it is helpful so we can anticipate problems and take preventative measures before something becomes an issue, but I still wince whenever I hear that phrase.  James is not his diagnosis, he is my baby and I am madly in love with him.

It seems counterintuitive to start a blog about James by saying he has downs and then advocating that we not tell strangers.  But I assume if you are here you will look at James the same way I do.  He is a beautiful boy, full of life, that may have a lot of obstacles to overcome, but he will continue to prove that with love and support he can do anything.

I want this blog to be a window into James' life for the people closest to us, especially the ones who are far away, those we dearly miss (shout out to the family in CA!).  It will keep you up to date with James' therapies, medical achievements, and milestones.  It will be a much better version of my old Facebook page.  :D  But it will also be a site to advocate for the beautiful people with this genetic condition.  I was inspired by a website called Noah's Dad that you can peruse here.  This father's dedication to his son is beautiful and the support he gives fellow parents with his website inspires such hope.  These stories keep me believing that the world is a good place.

It may seem obvious that I titled this blog "The Window" because I want it to be a view into our life with James.  Sure, but that is not the reason.  Stay tuned for my next post and you will hear the story of the diagnosis and our "window".

With love.

Isn't he adorable?!  Sorry, the blog wouldn't let me rotate it.