Support group musings

Some thoughts below about a recent post on the Facebook page of the FamilieSCN2A Foundation - an online support group for parents of children with that genetic mutation. It's the one my daughter Haya has. 

Members of the group come from all over: Argentina, Australia, Austria, Belgium, Brazil, Canada, Chile, China, Colombia, Czechia, Denmark, Finland, France, Germany, Greece, Iceland, India, Ireland, Israel, Italy, Luxembourg, Malaysia, Netherlands, Norway, Poland, Portugal, Scotland, Serbia, Spain, Sweden, Turkey, UK, USA, United Arab Emirates, Venezuela. And probably more.

It was written by Carla Forbes, one of the group's administrators, and is about the FamilieSCN2A logo and the colors that feature so prominently.

This is what the SCN2A support group is all about and this is why the following recent post there grabbed my attention. 

First, to clarify: I only peruse the page occasionally. The posts aren't usually relevant to me as most of the children are both younger and higher functioning than Haya. Hence many of the posts just depress me. 

But all convey the sense that these parents are utterly devoted to their children and determined to provide them with every available therapy and treatment to improve the quality of their lives.

Then this week, while I was up in the wee hours caring for Haya, I read the post I mentioned. It was exceptional, jarring and disappointing - to me at least:

Well... we found a host family in Houston (a hour and 45 mins from us) that is interested in having Alyssa live with them full time. We meet them Saturday.  This is the hardest and loneliest decision we have ever made. No one gets it and not many have gone down this road..... its a hard road y'all. Praying this is the right fit but if not, we will keep looking.

Several readers offered supportive comments and another few "liked" it. I thought a loud "ouch" to myself.  

But then I noted that neither of the site's administrators responded, as they usually do. Their silence seemed telling. This page was obviously not the right venue for news of this sort. 

Here below is my daughter Haya at her latest Monday Hydro with Mom session. 

Next week the pool will be closed for repairs. So we will be relegated to the large, cold public pool nearby. 

Why have I not bought myself a wetsuit like Haya's yet?!