Emma has a new post where she mentions articles about possible future cures for such things as Down’s and Angelman’s. We can hope and pray.
If someone came up to me with a magic potion and said it would “cure” Pearlsky, I don’t know what I would do. Really. It’s been seventeen years of her, who she is, what she has. Do I want her all of the sudden to be normal typical? No seizures … GREAT. Communication … FANTASTIC. Full communication … ummm … scary? What would she say about the last seventeen years?
How would I not give it to her? If she had cancer, I’d give her the cure if it was offered. But that would not change the basic “her.” Would Pearlsky be Pearlsky if all of the sudden she did not have the metabolic issue and somehow became a normal seventeen year old?
Why does even the thought scare the daylights out of me? Obviously a moot point since the chances are, well, slim at best. It has the feel of having given up a child at birth and then seventeen years later she is at your door.
So, would I give it to her? Yeah, I guess so, but damn, I would hesitate. Then again, I’d love to hear that doorbell …
When your child is diagnosed, it’s such a f’ing shock that it feels like you’ve lost the baby/child you had. I imagine if that same child was “cured,” you’d lose that child, too, — the one you’ve grown to know and love. But I imagine you’d grow to love the “new” one, too. And no seizures would be awesome.
What gets me is we are asked these questions when the truth is, at the age of 10, 15, 25 or whatever, a “cure”, if one existed is not likely to have the same effect as on a baby who’s brain is still developing. And “cure” is a word that is bandied about all to easily, then we end up with these arguments of what is “right”, “neurodiversity” etc. I did what I could to help Dimitri to develop as much as he can when he was an infant, still do, but the flexibility (of his neurology I guess) is much, much less.
OK doctor, tell me what it is you can do – has it been tested over the long term – is it something that can help an older person who’s neurology has developed differently and who’s life experiences are based on those differences – are you just saying “cure” to get more funding – did you say “it may also be relevent to autism” to get more funding – are you just a geek who earns a living in rather abstract experiments which really don’t have much to do with the real world???? If you cure my child can you guarantee that his life will be good?????
I don’t think I can sit waiting for a cure to be happy. I can’t make “life with a disabled child is a nightmare therefore funding must be provided for research” statements – our lives are not a nightmare, and Dimitri is for the most part happy, not suffering.
I can try and make life as good a possible for Dimitri. I can appreciate my son for who he is and enjoy life as much as I can the way things are.
of course, it has been suggested this optimism is a kind of defence mechanism which enables us to continue:
“On the one hand, parents of children with disabilities are emotionally well served to find a silver lining in that disability”
from NYtimes motherlode)
Forgot to day, I thik Elizabeth’s point is very interesting, and probably true about the growing to love part. As it is, I think I “grew into” Dimitri’s disability as much as he did, and if there were any significant changes we’d probably both grow into those too.
I still have the uneasy feeling that the cure debate is like prodding a cornered animal with a stick, and when the animal/parent responds, the answer is generally greeted with a blow to the head with a blunt innstrument (whatever answer they might give). Parent bating?
(nb, Dimitri is back at school today, so am lurking on computer, hence rambling responses)
That’s a very good question, and one I’ve often thought of myself. Considering everything that is being done with stem cell therapy, I strongly believe that there will be a cure for CP/stroke within Monkey’s lifetime.
If a cure became available, I think I probably would get it for Monkey Boy. I made a promise to do everything in my power to help him, so how could I pass up something like that? The idea of him suddenly being cured scares me as well. The special needs lifestyle is all we know, so it would take time to adjust. Still, the reason I have dragged Monkey to specialists all over the world is to give him a life that is close enough to normal. As long as the treatment didn’t have too many risks, I would have to put my fears aside and do what’s right for him.
With disabilities that affect a person’s mind, there is a real question of whether “cure” is even possible, or whether you’d just be taking the person away and replacing them with another person. But your daughter’s communication impairments seem to be caused by her physical disability; even if she is intellectually disabled, that’s not the reason she can’t use speech or movement to answer a question (if I understand correctly from the way you’ve described her). So if the physical disability was cured, she’d still be herself, and have whatever kind of mind she has now; she’d just be able to express herself better.
I really like your blog and have read all of it in the past few days. Hopefully I’m not being rude by offering my opinion on what your daughter’s “real self” is. I think it’s awesome that you want her to still be who she is if she is cured.
Initially, one would say, “Of course. Absolutely. Without doubt.” That has not been the case with many conditions. Many of those who are deaf have declined cochlear transplants that would give them hearing. I know a number of folks who have decided that a surgery, procedure or process is not worth the pain, effort, change , as they are comfortable as they are.
An instant cure so that someone who is going to be dependent all of his/her life could become self sufficient is something I would want for any of my loved ones. There are “normal”, “typical” people who, for whatever reason, are not independent, and their parents fervently wish they are. So I would for any person.
Even more than the difficulties in caring for someone who needs so much help, is the arranging things so that such a loved one continues to get care once the primary caretaker, the one who truly cares is no longer able to continue this care. There are many adults out there who no longer have someone to take care of them, and they are unable to care decently for themselves. They often suffer terribly.
For me it’s about intention versus side effects.
If I was offered a pill to completely remove my physical impairments or speech impairment I’d need a very very long hard think. These are a fundamental part of who I am, how I came to find my place in the world. I have a strong identity as a disabled person, just as I am also a lesbian, an (atheist) Jew, a Londoner and more other things than I have the energy to write.
But… I also experience some unpleasant symptoms, I’m vulnerable to illness, I do not expect to see old age. I wouldn’t hesitate to rid myself of my chronic pain, or render myself continent, or restore function to my swallow, cough or whatever it is that when functional prevents aspiration of food. And if a side-effect or risk of the magic pill to take away one of these uncomfortable or inconvenient things threatened something that’s part of my sense of self, I’d have to weigh it up with that information.
I’m reasonably sure that I’d jump (figuratively) to get my bladder fully operational again, at almost any cost. I’m equally reasonably sure that I wouldn’t risk it to get rid of my PEG tube – it’s painless and functions well. But it seems to be one of the most feared and hated things to those who don’t have – or who’ve just gained – one in their lives.
My rambling probably condenses neatly to:‘it’s all a matter of perspective’.
I find what you say really interesting, and from my personal, parental perspective, though I would never hesitate to “fix” Sophie (for all the physical reasons you mention in your comment), I sure am different because of her and would be hard pressed to say I would never do this again *for me*! I am so much the better because of all of this…I wouldn’t miss it for the world…but I wouldn’t put my daughter through it.
Except there are no cures.
I just linked to this post. You bring up issues I’ve been thinking about a lot. I don’t know that I have an answer either. And I should warn you that my post and its part 2 are very faith-based.