Being the parent of a child with special needs can be isolating. Being the parent of a child with a fairly rare complication of a subset of special needs kids even more so (turns out BPD is about 1 in 10,000 births; a trach is a small but growning fraction of a percent of BPD kids, because doctors are more and more realizing the benefits of breathing - what a concept, huh?)
Being that parent with a child who's in a one in a million sort of situation, and being Pagan?
Welcome to No Mom's Land, population you.
Don't get me wrong - I love reading the blogs of friends who rely on their religion to get through their days. Btu I wish once in a while I read something I could better relate to...and so here I am, writing away, trying to find the words I wish I was reading.
"You are God, You are Goddess" or, my more favorite Dianic version, "You are Goddess and you are beautiful" are important - we are divine, our children are divine...and they are beautiful and perfect as they are, because they are how they were meant to be.
Would we make life easier for them if we could? Absolutely. But I do feel sometimes that we're on this path together, Acorn and his father and I, and we're dragging the whole family along with us, and being together and accepting him for who he is, and facing his challenges together as a team is what makes it easier, no matter what the outcome is.
I spent a lot of time in the early days thinking about how we would "fix" Acorn - how we would make him better, make him whole. But as I've gotten my depression under control, I've realized that what needed fixing was my attitude and perceptions. Acorn is complete; he is a part of the divine whole, and as such, there is no need to "fix" anything - though improvements that take us down a path towards a fulfilling life are always welcome.
In Acorn's case, I know that there will come a day when people he meets will think he's "normal" - they will assume that he hit his milestones on time, that he's always eaten by mouth, that he's never had tubes and wires and monitors and equipment....they will take for granted everything we will have worked for. Not every child has that opportunity....but that doesn't mean that they aren't living a life full of joy and wonder.
Starhawk wrote a chant that says, "She changes everything She touches, and everything She touches changes" - look around, and you'll see that this is true. Our children change every day - sometimes for the better, sometimes for the worse, but they are, as we are, still a part of the divine. We learn as much from them as they learn from us, and in doing so, we change too.
And what about magick? I have learned, over the years, that in order to make magick really work, I have to be able to let it go. That starts by accepting the situation as it is before I can change it, so that I have firm ground to stand on when I start directing energy - it's more likely to be on target that way. I've done magick for him, and on him, I've done energy work for him and on him, I've asked my Gods and Goddesses for their help and protection on his behalf.
In the end, really, it all comes to being mindful of where we are right now, and planning for the future as best we can. The sun will come up tomorrow, and the wheel turns, and we start all over again.