Adapting

River has been home for more than 6 weeks. It feels like it's always been this way. We have many things to be grateful for including our team of care providers. Excluding overnight care, most of River's needs are covered. We even have one respite provider (we could use another). We have an amazing community of friends and acquaintances bringing us meals to help with the adjustment. However, raising a River, is hardly relaxing. I always have an ongoing To Do list in my head or my notebook. I hope that there is nothing I forget (there always is) and I hope what I do forget isn't critical.

One of my projects is an advocacy project. I'm hoping to collect videos and pictures to put together a movie of River. I'll use this video in our appeal process. As it stands now we don't have enough funding to maintain River's in home supports for the rest of the fiscal year. I'd also like to have some overnight care.  We made a similar video more than 7 years ago when River was a wee little guy.  (I just watched it again and cried.)

And here's a bit of what else... We're fighting insurance companies for coverage of medication and formula.  I'm coordinating appointments, including an upcoming MRI where they'll also do a spinal tap and take pictures of his retinas. We're communicating repeatedly with local and state agencies to sort out why all of his funding isn't available (so much red tape, not to mention overworked employees and inefficient systems). We're trying to stay on top of the school system to make sure he gets his FAPE (free and appropriate education - do I really need to do this people? Isn't this the law?). All this while training new providers, coordinating staffing schedules, keeping medications and supplies stocked, working full-time, raising another child, maintaining adult relationships and maybe, a little self-care.

We're all adapting to this new life together, growing and making memories, loving each other. I couldn't do this without my partner, my friends, my community, my neighbors, my work. Every bit helps.