Grace for Rett » Grace's Life with Rett Syndrome

“…that strangers you will love will move in behind our faces.” Thoughts on curing my daughter

“This is what we hear when you pray for a cure. That your fondest wish is that we will cease to be and that strangers you will love will move in behind our faces.”

-Jim Sinclair

Do I wish Grace didn’t have Rett?

Is depends on which day you ask me. One day, I’ll say “I’d go to the ends of the earth. Do whatever it takes. Give my own life if she could be cured.”

On another day, I’ll say “of course not! Rett is part of who Grace is whether I like it or not.” Sometimes, the very hatred of Rett makes me uncomfortable because there’s this perfect little girl in my life and Rett is her cross to bear. And if I just stand there and hate it, am I not hating part of her? If she was ginger here in the UK where you get ridiculed for being a red-head, would I say “I hate ginger!”

“But having red hair isn’t an illness” you say. Which brings me to my next dilemma: is Rett syndrome an illness? Or just a difference? Is Downs Syndrome an illness? Is being gay an illness? Is having ginger hair (which we know is a genetic anomaly) an illness? This whole question of cure. Of healing. Of ‘getting better’ all hinges on these definitions.

When Grace was diagnosed I was flung into this lifestyle I never wanted. WE were flung into this lifestyle. I never imagined that my kids would be the kind of kids who, instead of yelling ‘shotgun!’ and fighting over the front seat, methodically clamp the front of their sister’s wheelchair in while I do the back – a process we’ve gotten down to about 40 seconds. I never dreamed that my 9 year old would be able to carefully administer meds and liquids into his sister’s g-tube. Clamp. Screw. 10ml. Wait 5 seconds. 10ml. Clamp. Screw. Or that these little boys of mine would be able to say to the babysitter, “I’ll teach you how to do her pump when mom leaves.” This is our lifestyle and we didn’t choose it.

Today, as I was watching the latest TED talk while doing my makeup (as I do almost every morning) I watched the most beautiful talk from Andrew Solomon. I don’t agree with some of the things he said. But overall it’s such an amazing talk about not just unconditionally loving our children, but also offering them unconditional acceptance. And what does that look like?

If you don’t want to watch the whole thing (I highly recommend that you do), then at least start watching from 13 minutes in. He says this, which I rewound and watched at least 3 times to really take it in:

“We have to think about how we feel about cures altogether and a lot of the times the question of parenthood is what do we validate in our children and what do we cure in them?

Jim Sinclair, an autism activist, said, ‘when a parent says I wish my child didn’t have autism, what they’re saying is ‘I wish the child I have did not exist and I had a different child instead.’ This is what we hear when you mourn over our existence. This is what we hear when you pray for a cure. That your fondest wish is that we will cease to be and that strangers you will love will move in behind our faces.”


Oh man…please read that again. Just typing it out had made me start crying right here in Starbucks.

So many Rett parents I know are on this relentless campaign to cure Rett. I was once one of them. I used to run a charity called Cure Rett for goodness sake. I know there will be a cure for Rett someday. I once believed (and now merely hope) this will be in Grace’s lifetime. But I’m not just hoping this for Grace. I’m hoping this for the parents in 5, 10, 15 years who will hear the words ‘your daughter has Rett syndrome’. And I believe that there are many cures for Rett that aren’t a reversal of the gene that causes it. We also need to cure misconceptions, cure communication. Cure the day to day problems these girls and women face. Cure the sadness that siblings and families live with. Cure the loneliness. Cure the loss of friends following a diagnosis.

And as for MY daughter with Rett? Do I want her to be cured? Yes. But do I want her to be a completely different person? No. Do I want her to stop struggling to breathe, scratch her itches, communicate? Yes. Do I hate Rett?

Yes.

No.

Rett syndrome has ended up being one of the biggest paradoxes I’ve ever faced.

Kelly Dolinski Stoker - June 4, 2013 - 12:17 pm

I imagine that it would wanting the same child, but them having the ability to be more of the same child. I too pray for a cure for Rett.

Joanna Tomlin - June 4, 2013 - 1:03 pm

Interesting!

Rebecca Sellers - June 4, 2013 - 1:36 pm

‘when a parent says I wish my child didn’t have autism, what they’re saying is ‘I wish the child I have did not exist and I had a different child instead.’ This is what we hear when you mourn over our existence. This is what we hear when you pray for a cure. That your fondest wish is that we will cease to be and that strangers you will love will move in behind our faces.”.

Balderdash! This man needs to come to terms with his own bitterness, and possibly how he feels about himself and his parents. Just as ALL of us do as we grow up. If at this time in his life he wants autism to define him that is his problem, It doesn’t mean we have to buy into his limitations for him.

I have 2 autistic grandchildren. Do I wish for a “cure” of course! NOT because it will change who they are. but so I could actually get to KNOW who they are! Right now all any parent can do is guess. You cannot know how excited I was for instance when Brendan came home from school and actually let us know that he got lost at school! He is fine, and he probably got distracted from where he was supposed to be going. BUT he TOLD us! I am SO excited that I even forgive what ever adult that was supposed to be watching him.

Beth, I am an Acute Asthmatic… It is a GENETIC disposition, I am NOT defined by this asthma, any more than my grand children are defined by their autism, OR Grace is by Rhetts. But just like Autism, and Rhetts limit our children, it limits me in ways that most people can have NO idea. I remember in the 80s, people thought it was all psychosomatic. We know better now, but society still tries to define me by what I allow my lungs to keep me from. Even today, look at the Geeks on TV they have their inhaler, and the authors have the geeks use it when ever they want to remind you that that character is pathetic and weak in some ways. This asthma not only reduces my activity levels. The lack of oxygen causes some definite issues with thinking skills. Do I want a cure? You better believe it!

I even started taking some shot every month to change the way my DNA has my body reacting to certain “triggers”. I don’t want to die young, like my uncle did.
Neither does Grace want this Genetic malfunction she is restrained with. And after watching Bella struggle to communicate with us, I cannot imagine that she wants the chains that autism is wrapping around her voice either. There are days I watch her literally scream in frustration. If we didn’t want to be accepting of her, we would not be trying every therapy we can find to help her communicate with us. If we didn’t want our NT children in general to be accepted by us, and society, we would not discipline them, we wouldn’t teach them table manners, we wouldn’t hold their hands when crossing the street.

As for those autistic that say we don’t love them because we want a cure? We are asking them to trust that their parents DO love them. How can anyone want what they can’t conceive? The color blind man – He’ll never know what wonders the colors add to the world. But then how do we in the normal spectrum of vision know what God has compensated that color “blind” man with. I really think it is the same with Autism, the sensory issues are horrible for some – but EACH individual has their own experience with it. Some are gifted with abilities the rest of us cannot conceive and I would not wish to take that from them.

I like the message behind this film, of acceptance of each other. I DON’t like it’s message that we should accept our limitations.

As for you, Elizabeth, don’t for one minute believe that Grace hears what that ONE young man or his friends hear when a cure is spoken of. What I firmly believe that Grace hears is ” My mom wants me free to be me, My mom wants to know me better, My mom wants to hear my voice and she wants me to be whole with the ability to pet a kitten, or to fly a kite!” Having met Grace, and having spent only one afternoon with her, I can tell she has a sense of humor just wild to get out, I can see her spending much time in God’s presence, But I know beyond a doubt she would love to tell you what she learns there. She would love to be able to LIVE what she learns there. A “Cure”? Absolutely. A Cure does not mean it changes who the person is, it only opens up new doors to understanding, and new experience. Keep working for that “cure” I am praying that one day you will hear Grace say ” Thank you mom, for believing in me enough to want to hear my opinion.”

Amber Garrison Weigl - June 4, 2013 - 1:54 pm

Marta, Caroline’s mom wrote about something similar a while back. Hopefully she won’t mind me linking here: http://ourcarolinelily.blogspot.com/2013/04/separating-caroline-from-rett-syndrome.html I found her thoughts helpful in untangling my own feelings about this.

Anonymous - June 4, 2013 - 2:31 pm

It certainly is a great debate and although I cherish all the benefits that have come my way as a result of being part of this RS world, I too would do almost anything to cure RS for my daughter. When you can see the sadness in her young eyes as she looks on to see her sister play with friends, something she can’t do, it totally breaks my heart. It is moments like these that no one can tell me that a cure is a selfish pursuit or thought. Our whole existence is about becoming the best we can be and part of that is making the best with whatever cards we are dealt but that doesn’t exclude accepting that our girls must suffer on levels that most people can’t even comprehend and for an able bodied/minded person to cast judgment that this means we don’t fully love our children for who they are is unfounded. I believe that RS can be both an illness and a difference, I don’t think we have to decide on just one. I honestly think we can have our cake and eat it too 🙂

Becky Harless - June 4, 2013 - 7:20 pm

I get what he’s saying and I certainly can’t look at it from your perspective because I just have no clue. I do have a 3 year old daughter though and I know I would just want a normal life for her. I think it’s perfectly fine to want your child to be cured because you want to know what she’s thinking and how she feels… you want hear her say what she loves and that she loves you. You want her to grow up and not have the struggles that she faces today. This to me is natural (or at least should be). I’m sure there are despicable people out there that wish their child were different for selfish reasons, but to lump everyone in that same category is not fair. So this is just my little pea brain opinion and I am not a RS mom or anything…

Becky Harless - June 4, 2013 - 7:21 pm

also I probably shouldn’t have posted because I did not watch the video, I’m just responding to what you wrote.

Michael Bersell - June 5, 2013 - 11:48 am

It is not selfish to wish the best for your children.

Alice McGovern - June 5, 2013 - 5:29 pm

Oh, I get tired of this type of talk, although everyone is entitled to their opinion. I love my eccentric little autistic sons, but I wish they understood danger. Wanting them to know that traffic and deep water are dangerous is not wishing for an entirely different child. And wishing they could tell me when something hurts is not wanting another child, it is wanting to be able to help the children I have. But I think I get the gist of what he is saying, I just don’t think about things that way.

Magdalena Partyła-Wójcik - June 6, 2013 - 7:43 am

Great post, gave me a lot to think about. Thank you very much for it.

Natasha Perrett - July 20, 2016 - 2:40 pm

Couldn’t have put it better my self. Lilly is just lilly and she happens to have Rett. I just want her not to struggle xxx

Angela Cohoes - July 20, 2016 - 3:40 pm

I don’t think wishing your child didn’t have to struggle & go through daily pain without being able to communicate there needs is wanting a different child. My daughter has Rett Syndrome & I would do anything I could to cure her DISEASE. I want my daughter to have a happy, pain free life. My daughter has Rett Syndrome, she isn’t Rett Syndrome.

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