Grief like an onion

Keep falling until you can’t fall no more
Until you feel like you’ve been falling for way too long
Then you will know ’bout me -fink

I usually know what I’m about to write when I get to this blank screen. I have a number of posts that sit in my drafts. This has been one of them sitting here for about 2 years and it’s just been a title with nothing in the body. Because what can I possibly say that hasn’t already been said. I feel like I already wrote pretty exhaustively about grief in this post from 2015.

I feel like all I do is bleed.

The day Grace was diagnosed I carried her into the hospital in her carseat. She was 13 months old. Chubby, cheerful and holding a cookie. And as I rounded the corner into the waiting room, I was met with a room full of disabled children. Wheelchairs, drooling, mangled little bodies, strange noises. And I vividly remember telling myself (so loudly inside my own head) “Grace will NEVER be like that. My baby isn’t like THOSE kids.”

And sometimes I fear that newly diagnosed families will land here and see my blood flowing and say “MY life won’t hurt like that will it?” This is not the waiting room you want to be sitting in when you have a chubby little baby carrying mutant genes and a cookie.

I definitely do write about hope, though. If you’re newly diagnosed, you might want to look away. Here’s some more hopeful reading:

There’s a thing called perpetual grief. People say “life is hard and these things happen”. And I tell them, “yes and hard things are supposed to happen, be done. And then another one happens again.” Rett syndrome is grief after grief wrapped in a skin of grief. The initial diagnosis is only the first time the ground gets pulled out from under you. The cycle of grief is perpetual and doesn’t end with acceptance. That’s not part of this cycle. The illusion of acceptance maybe? But then epilepsy starts. And you accept it. And scoliosis happens. And you accept that too. And every 6 months you might have an X-ray where the spine gets worse and you accept those. And she grinds all her teeth down to little nubs. And breaks her legs. And breaks a hip. And spends her birthday in the hospital. And Christmas in the hospital (10 days). And another Christmas in the ICU (16 days and counting). And you accept. And accept. And accept. But the overall package of all this suffering is unacceptable. Rett syndrome is a motherfucker. I try to accept it (with the serenity to accept the things I cannot change) but when I gain some ground, it gives me another black eye.

Life becomes an abusive relationship you cannot leave.

You become a casualty taking care of another casualty. A POW taking care of another POW who is starving just a little less than you. My broken heart is caring for her broken body.

At any given moment -on any given day- I’m experiencing one or more of the stages of grief: denial, anger, bargaining, depression or acceptance. And more than one at a time, because there’s the overall grief of chronic Rett and whatever stage I’m in that day/week/month/year. And then the stage of grief for the current acute crises of the day. Grief on top of grief. A grief sandwich. A layer cake of grief. Grief like an onion.

In this last mid-term election, I heard for the first time of something called rage-voting. Voting in anger. Voting against something instead of for something. And this same vernacular can be applied to any number of normally-healthy things. Rage eating. Rage donating (literally, there’s a website for this

The bargaining part has been the hardest phase to become present to in my own life and witness playing out in the life of others. It feels intimately linked with anger. It’s where I think Rett parents can get stunted and there are whole charities currently propped up by being enablers to denial-fueled bargaining and rage-raised funds. I truly believe if Rett charities offered mental health support to parents, their fundraising would decrease substantially. Because until I went through therapy and grief counseling I thought that battle was all I could do. And then I learned to forgive myself for believing this and move through the pain. And I move through pain every day like walking with heavy boots through an ocean of molasses.

You see, for me, bargaining took the form of charity. First supporting a charity of choice (at the exclusion of all others) and then starting one with a group of other parents. I traveled the world trying to be important in Rettdom. Races. Raising money. Mastermind of awareness campaigns. Starting this blog. All under the guise of “hope”. Of “fighting” of “battling” for a cure.

Many calls to action I see are posed in that embattled language of war that feels so familiar to me having grown up in 1990’s American Charismatic Christianity. “Armies” who are “Fighting Rett”. As if we have any power to do such a thing. Rett isn’t cancer. No poison can kill it. Any hope for a cure is for the future. Not for our children now. Can you really imagine a body having been ravaged by thousands of seizures, muscle wasting, ICU myopathy, dependence on drugs, extreme osteoporosis, a throat which hasn’t eaten in 10 years or ever spoken a word…do you really think there will be a magic bullet cure that takes this body and makes it normal? Would I even want that? The lifetime of pain, rehabilitation and disability this would bring? Trading one unworkable situation for another.

Better the devil I know than the devil I don’t.

This is bargaining, my darling friend. Rather than accept that she’s different, single-mindedly focusing on anything you can do to change the outlook. Desperate to reach into the very fabric of time and pull something into the present which doesn’t exist (a cure).

All of that will be a painful read. I don’t blame you if you’re disgusted. I’m disgusted too.

Some people reading this will be too early in their walk. Others will wish they’d heard that sooner. I cannot control who is reading this and when. That’s up to the universe. Maybe this site won’t load for the people who aren’t ready to see this. Stranger things have happened. But I so wish that someone gave me the permission to be ok knowing all that earlier. To gently take the weapons out of my fists and let me fall apart and move through bargaining and the anger and the denial and the depression. I had to wrest that permission from the hands of god-knows-where and give it to myself as a gift. And THAT is the serenity to accept the things I cannot change.