Beware this post is nothing but guts and tears. If blood makes you queasy, run. And please don’t comment about me being ‘amazing’ or wonder mum or whatever. You’re all wonderful but this post is about that magical thing when one person can sit down next to another and simply say “me too”.
Another thing…I have no idea what most of this has to do with Rett syndrome. I some of the things I wrote here are part of who I am. Some developed out of the process of grieving for my child who died but didn’t die. It’s hard to know where one part begins and ends. It’s all just intertwined into making me who I am today. There you have it.
It’s one of ‘those’ days. I’m feeling this weird happy/sad thing. Sunshine and clouds. Feeling majorly introspective and usually, I can avoid this but today is a Saturday.
So as a lifelong writer, there’s always the desire to edit, curate, whatever. I’m just going to bleeeeeeeech my guts out here and not edit a single thing. Ok? Ok.
I’m a workaholic. Scratch that. I’m a busyaholic. I’m unapologetic about this. If you don’t work enough, society punishes you. If you work too much, you punish yourself. Is it bad to be a workaholic? I dunno. I do know that working, and moreover, busyness, keeps my mind from wandering into the deep dark recesses inside itself. The places where I think about Grace dying someday. Or the things we’ll never have with her. Or my own shortcomings. So this is confession #1.
In spite of this, I CRAVE solitude and stillness. Quiet. Nothingness. The older I get, the more I enjoy my own company more than anyone else’s. Sometimes I want to get away from other people so much it hurts. I want to sit on the beach. I want to sit in my car. Lay in my bed. Whatever. What do I do when I’m alone? Whatever. I. Want. Sometimes it’s work (duh). Sometimes listen to music. Play on my phone and be a voyeur into all of your lives. Post things that make me look like I have it altogether (is social media healthy or toxic? I dunno.)
I feel guilty for grieving for my daughter who died but is still very much alive. The Grace I gave birth to -the concept/idea of Grace- died. This is an unspoken truth of grieving after your child received a life altering/limiting diagnosis. We feel like our child died but the guilt of that is unbearable. So we’re grieving for something but we don’t know what it is. Or we DO know but we can’t say it out loud. The Grace I thought she was going to be…she isn’t. It’s been almost 6 years since she was diagnosed. But thanks to some sweet sweet lies whispered into my ear about a cure in “5 years” I (like many Rett parents) have a stunted grieving process. I threw myself into charity mode. Cure cure CURE! I thought I could control Rett syndrome. I can’t. I really only started coming to terms with this diagnosis like maybe 2 years ago when I walked away from the charity world and decided I’m just going to be a Rett mum. I’m not a saviour. I can’t fix this. I can’t tell anyone else how to do Rett syndrome. I’m just me.
Grief has aged me. This is me 7 years ago:
I now feel 20 years older than I am in this photo. Grief years are…like…double or something. I used to have a light in my eyes. Life was ideal. Now, I often feel slightly dead behind the eyes. Tears are always just below the surface. My smiles always feel fake. Grief has made me both numb and super sensitive. It’s like inside my soul is this sensory deprivation and sometimes I just bang my head on the nearest wall to FEEL SOMETHING. When Grace first became ill and we didn’t yet have her diagnosis, I was up all night every night crying, wringing my hands in my rocking chair. Holding onto her for dear life. We thought she was dying. I lost 20 lbs in a couple of months. Sometimes I wish I could get chubby just so I wouldn’t feel like I have this skeleton face carved by grief. But my stupid skinny genes won’t let me so I just pile makeup on instead. Goodness I didn’t anticipate this post getting so dark. Desperately fighting the urge to purge…to edit. But I’m not going to because I need to know that I’m no the only one who grief has eaten alive.
I’m pissed that Grace will never grow up and move out. Selfish, I know, but there you go. My plan was to have children young so I could get back to my dreams, my goals, my career. I wanted to grow them up well and watch them fly. My boys will do this. They will be amazing men and I can’t wait to see where their choices take them. But Grace? Nope. She will always be here. Needing changing, feeding, washing. I will be 60 years old taking care of another aging adult as if she were a newborn. I dream of her going into adult care some day. And I dream of taking care of her forever. Part of me wants to protect the vulnerability of her and never let another person take care of her and part of me wants to protect the vulnerability of ME and send her away. It feels uber monstrous to admit these feelings. But there you go. Another yucky thing carved into me by knives of grief.
Friends. *sigh* friends. “Friends”? We lost some people in the fire. In the midst of our darkest times, we had people crying to US about what we should be doing to further our friendships. “You don’t call me anymore. We used to go to the movies.” one person cried. Call you? CALL YOU?! I don’t even talk to myself anymore! Some people I found in the whirlwind of grief and we just held onto each other until the magnitude and gravity of the spinning flung us apart. But in the midst, a new kind of friend rose from the ashes. The sticky ones. The ones who come after the diagnosis. Who have never known anything but the ‘new and unimproved you’. And they love you anyway. There are people in my life who I am holding onto with a death grip. They keep me sane. Or we go insane together. Either way, I am not alone. You know who you are and I love you more than I ever thought possible to love people.
Where is God in all this? Where is faith? Well…he’s just…there I guess? Like a good friend who just sits with you and doesn’t try to fix anything. I don’t expect him to. I don’t blame him. Something I learned when I embraced mindfulness/meditation is that you just sit there and allow your thoughts and feelings to happen. You don’t fight them. You sit with them. You acknowledge them, their existence and you say “thank you for letting me know you’re there but I’m not going to talk to you right now. Just be.” Sometimes I feel like this with God. He’s there. And I’m there. And we sit together. Once in a while I kiss his face and let him know that we’re cool. Sometimes I let him touch me. Sometimes I run. Intimacy can be hard in my world. Poor guy.
Well, well…feeling well and truly euphoric now. Actually smiling (God, I love writing). “A burden shared is halved” (or something sappy like that).
