Letting the Love Shine In

Alex's sister Rachel created a GoFundMe campaign. At first we felt a bit prideful about raising money and bringing more attention to our family at this time, however she is certainly right that there are at present and will be unforeseen expenses beyond Rainan's medical expenses to address. One of the big first lessons we are learning in Tragic Magic School is that people want to help one another. Sometimes it takes something like this to stir up the love, but friends and family long out of reach make themselves available, perfect strangers offer their time and wisdom to help sort out the confusing coordinates of hope, and most people with a little money to spare would love to see their hard earned resources go somewhere besides the mortgage, rent, grocery store and gas.

CureSMA was one of the first websites I ventured deeply into, and they mailed us a bunch of really useful information on SMA, Spinraza and other leading research into the nature of and potenital cure for SMA. They also sent us a big box of toys other families have found to be appropriate for low-tone kids. It was sort of bizarre receiving such a nice thing for such a not-nice thing, but I was deeply moved by the love and support I could feel spring out of this box. I had been looking around lately for an etch-a-sketch or one of those old-school magnetic doodlers for Rainan because he loves drawing but has a really hard time pressing down hard enough with any pen, pencil, market, crayon or pastel to really get into it. Apparently other parents had the same thought, and there was a Play-Mate DoodlePro in there! I am not usually psyched about new bright plasticnesses coming into the home, but this made me feel less alone, more aligned with the other men and women living, loving and working to make this work.