Watching Speechless has been the most therapeutic thing I've done recently. Lots of people have suggested that I get in touch with a support group, meet other parents, listen to their stories, get support there. I think because they don't know what to do, can't imagine what it's like, feel scared and heart broken themselves, want to fix or do something. Nobody seems to know what to do. I say bring us a meal, send B a check, ask us to hang out, or just come over, but still no one can imagine. Watching Speechless helps because it normalizes disability, it brings awareness in a funny, helpful way. Each time I go online to find support, all I see are these terrible pictures or death notices posted, I guess to bring awareness and funds to the cause to cure Duchenne.
I think I'm moving from accepting that B has this thing to the consideration that he will die, and not in his 30s or 40s but sooner, that I could loose him, not just his muscles. They say, that its harder on the mom, the parents, then the patient. That the patient knows in ways the parents can't. I know that he is the ancient one, he is the one with the knowledge and understanding and that he is going to teach me probably far more than I will teach him.
Your children will teach you everything you need to know.
I wrote this in my journal a while back. Your children will teach you everything you need to know. So, what do I need to know? That life is precious and terrible and why wait to do anything? That my emotions are here to bring things to the surface, to light, so they can be washed cleaned and released back into the sea of feelings and consciousness. That I can raise my vibration a little and that's enough, I don't need to make quantum leaps and that I will need to relearn again and again and again and again. That yelling in useless and only depletes energy. That i love my children too much to yell at them for any reason. That laughing and singing and dancing are a sure way to release tension. That love making does as well. That my children are angels from heaven and that we are all miracles. That after every night, day will come again until it doesn't. That we can only know so much and we will never stop trying to know more. That things changes. To just keep swimming. The let go, let go, let go and hold on. That its a mess and beautiful, precious mess. To get your head out of your ass and slow down. To turn off the news and Facebook feed, but allow Instagram and Insta story for a little while. That those that inspire you are further along on the path and with awareness people become more humble and more wise as they age. That I know nothing. That I wonder what you are thinking and fear abandonment. And that fear and that feeling are what cause the most pain. That being in Nature helps.
Possibly our last "hike" at Hedrock Nature Preserve in Neenah.