I stopped writing much of anything a few months ago because my heart hurts too often. I suppose a good deal of the world’s best writing is composed by those with heartache, but my variety has been the kind that renders me pretty empty and void of creativity. All energy is spent on either survival or recovery, depending on the moment. I have decided to be kind to myself about this change in “productivity”. I keep an image in my mind of a Koi fish that burrows down deep in the mud when the weather turns cold, slowing everything down to the furthest extent possible while remaining alive. It’s different from hibernation, because I (and the fish) stay awake, but we are using everything we’ve got to stay alive, trying to endure the harsh conditions until gentler days arrive.
But who needs to hear another sad story? Don’t we all need a bit of hope? A light at the end of the tunnel we can steer ourselves toward? I know I do. I also know that hope has been a tricky business for me in this life of mothering a PDA child. What is reasonable to hope for? My child is precious and perfect, I don’t want to change her. I want to change how miserable she feels so much of the time, and no matter what I try, I can’t seem to make much of a dent in that. And I don’t feel it’s unreasonable to admit that I have also hoped that I myself can feel better than I’m feeling most of the time these days.
I have anticipated doctor’s appointments with months-long waitlists, hoping for some support in this goal, help my child feel better in herself! It has been suggested (multiple times) that my daughter has bipolar disorder. I have been told that my daughter’s ASD diagnosis is wrong, or at least that she “emerged” from that diagnosis if it ever was accurate to begin with. I have tried massive dietary changes, therapeutic listening protocols, cranial sacral therapy, rhythmic movement exercises, low-demand, no-demand life styles to any extent possible. We have removed her from school as soon as we recognized that that environment was causing too much cumulative stress in her little system. My husband, my parents, and I have gone to massive efforts to help separate my children so that Rose can benefit from as much one-on-one time as possible and avoid the trigger (demand) of sharing time/attention with Danny. I have done all of these things with a large smattering of hope in the mix. The truth is, where we are now still feels really hard. There are always ups and downs, but we’ve been on such a long, hard run with barely any ups, and when we get them, those moments are hard to trust. I am just so tired.
This is why I haven’t written: because I don’t want to discourage or weigh down anyone who is already out there trying their best to take on yet another seemingly impossible day. I’ve decided to write anyways, because this is me in the trenches, reaching out to you in the trenches.
Although I often feel smacked in the face when I go do that silly thing of hoping for anything again, here I am hoping. I’m hoping that you feel some solidarity in knowing that you are not alone in your overwhelm. I’m hoping that you find moments of peace in the midst of the rough days. I’m hoping you find the ability to recognize glimpses of ease coming into your child’s being as you pour so much love and compassion (and other feelings, too!) into the work you’re doing as a parent or caregiver.
I am writing this now because something remarkable is happening: my husband came home from work, and my nearly paralyzed-with-anxiety daughter asked him if they could ride bikes to the park -- and -- she wanted to go with her little brother. I want to tell you, but perhaps you already know, this, my friends, is nothing short of a miracle.