I Cycle Through the Stages of Grief Due to My Daughter’s Rett Syndrome
I used to think the stages of grief — denial, anger, bargaining, depression, and acceptance — only applied when someone died. That’s not true.
I haven’t lost my child — I lost the idea that my child would naturally develop to enjoy the life I dreamed for her. It’s that loss that first launched my grief. It’s the daily challenges of raising a child with a rare disorder that jumbles the grieving process into one that seemingly never ends.
When our daughter Cammy was 20 months old, we went to the physiatrist’s office and first learned of Rett syndrome. I kept thinking my child couldn’t have it. Not only did she not have all the symptoms, she was showing progress in therapy — painfully slow progress, but progress nonetheless.
This was denial. I returned to this stage when we added a wheelchair, a feeding tube, and most recently, an oxygen machine. There will be more setbacks in Cammy’s physical health, and each time I will experience the same avoidance, confusion, and fear of denial.
It didn’t take long to move into the next stage of anger. This one bothered me the most because I was aggravated with myself for feeling angry! Cammy wasn’t progressing. I left a job I loved to begin my career as a stay-at-home mom, and already I was failing. Cammy wasn’t reaching milestones, and I thought it was because of something I wasn’t doing. I had no idea that children naturally moved from rolling to crawling to walking without coaching!
Watching other children bypass Cammy developmentally, being unable to communicate with my nonverbal child, a lack of communication between therapists, doctors, and other medical professionals, and a dozen years of sleepless nights can trigger the anger to resurface.
When anger gets you nowhere, you begin to bargain. You’d do anything for your child to be healthy and normal. I pleaded and begged for everything to be OK — for Cammy to feed herself, for her to pick up an object and hold it for 10 seconds, for her to say something. Nowadays, I negotiate with myself. If I can just get through this week, this month, this stage, I’ll be OK. We’ll be OK.
It has been 10 years since Cammy’s diagnosis, and I still go in and out of the depression stage. The first few months after the diagnosis are a blur. I was in survival mode. I had a newborn and a child with profound special needs. I remember my husband coming home from work, and all I could report was that they are fed, changed, and alive, so I did my job today. Those were the only reasons I got up every day.
Our second child drew me out of the depression. Watching how a neurotypical child develops was so fascinating to me. The fortunate thing about the return of depression is that I have developed routines and strategies to manage it. It will return, and I’ve made peace with that.
My family has appeared in the news quite often, and watching us on television or seeing us in the newspaper, I lose my perspective. A sense of sadness comes over me thinking about this “poor family.” Then it hits me — this is my family!
For this reason, I don’t know if I’ll ever arrive at the last stage of grief, acceptance, because I don’t know if I’ll ever be able to accept Rett syndrome. What I have accepted is that grief is a natural part of raising a rare child.
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Gidget Turville
I have a son with Retts. Sad thing is I asked neurologist when he was 18 months if my son might have Retts. He simply replied no. Only girls can have Retts cause it's a girls genetic disease. Tons on tests, x-rays, MRIs, muscle biopsies, labs all came back normal except for acid reflux, truncal ataxia, and the inability to sweat. Mind you this is over a 5 year so and. Neurologist said science has to catch up to your son. So I took him home crying. My son is almost 7 and he can only function like a 6 month old non babbling baby. I said nope I ain't waiting. Went to different hospital different neurologist. I mentioned Retts so she said let's do genetics testing. Low and behold he has Retts. His genetic Doctor came in looked at us and said treat each day like it's his last cause he can pass away anytime. Boys have a hard time living with it. He turned 8 a week ago. Had his first seizure three days before his birthday at school. Went to hospital and nurse practitioner there told me first seizure is nothing to worry about it's if he has a second one. He sent us home. I called his neurologist and set up an appointment. First one is more than enough to worry about. I get alot of people don't know about Retts but if a parent tells you their child has Retts and you know little to nothing. educate yourself. You might just save a child's life.