And as part of our healing process, Lou and I needed to know what support was out there for us to make sure we can hold our family together.
In many ways, we were pleasantly surprised.
First, I can't say enough wonderful things - even in the 72 hours since I'd first heard of SLOS - about how amazing the SLOS family community is. Such a rare and difficult disease has created a close and caring community of affect families. I reached out and instantly was welcomed. I have already found them to be a tremendous resource, and Lou and I are both looking forward to getting to know them and their families as we go down this journey with Harper.
It also turns out that we're geographically well located for expertise and treatment. NIH and the Krieger Institute are two loci for SLOS knowledge, and we're within spitting distance of both. The fact that I lobby for NIH for a living us suddenly doubly comforting.
We've also discovered there are more resources out there for developmentally disabled children and adults than we ever imagined. In Silver Spring alone there are two excellent daycares, with health professionals, occupational therapists, etc. right on site. So suddenly we've begun to feel like becoming full time caregivers is not our only option. We've even arrived on the same page that if we need to hire a night nurse or other help at home, we'll do that. It's important to us to make sure our family gets what we need to support this major change.
And also on our list is finding support for Lou and I (and maybe Shea, too) to get through this. We've been gratified by the outpouring of support from family and friends, who've already given us many shoulders to cry on. I think professional therapy will be in our near future, too. Neither of us is very good at asking for help, but this clearly is a skill we need to learn. Fast.
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