Unspoken

I am still on a high from the conference.  It was simply lovely to be together with so many other families who "get it".  There was never a need to explain or apologize.  We all understood.  There are so many different people - people who may not typically be drawn into my circle of friends.  However, the fact that we share the joys and sorrows in having a child with MPS brings us closer.  There are a few moms whom I have gotten to know who are especially dear to me.  It was such a treat to finally meet them and share some face to face time with them.

I keep thinking about the beautiful children I met.  Some of them I feel as if I know.  I follow their blog or see their photos on facebook.  It was such a treat to finally meet them.  There were families there with young children - babies - who have been recently diagnosed.  Of course there were families similar to mine...a few years into the diagnosis and finding our way.  I met families with children older than mine, confined to wheelchairs and slowing down considerably.  And then the moms of children who have passed, there to show their support for the rest of us.  It was quite powerful.

I spent a lot of time watching the older kids and their families.  I am so unsure of what the future holds - when, how quickly, what the disease will look like as it progresses in Waverly & Oliver.  It scares me.  And to be honest, seeing the older kids was difficult.  I am sad for their families.  I hate seeing these absolutely beautiful children suffering with this disease.  It isn't supposed to be this way.  But they are still there.  Even though they aren't as interactive, not much eye contact and such dependence on their parents, they are still there.  You can catch glimpses - a smile, a look.  Our children have such beautiful eyes - windows to the soul.