I have spent the past 11 years fending off misconceptions that I must hate my life and that I must be angry or depressed about my son. Often those misconceptions come from people without direct experience with disability – sometimes I explain, but mostly I just continue to live my life as authentically as possible, sharing what I feel and don’t feel along the way.
People don’t make this assumption about me out of nowhere; online and in real life, I witness varying degrees of anger, outrage, sadness and helplessness expressed by caregivers of children like Owen. And honestly there’s little here I can relate to. (Except maybe the sadness. Yes. I can relate to the sadness…)
Here’s the objective truth: I have a son with multiple severe disabilities. The obvious ones are physical and are SO very obvious that they mask any cognitive ability he may or not have. Because there is no way to get specific responses out, I have no idea how much he ‘knows’. He is of course even more limited by his environment – his interactions are primarily with caregivers and because he is deaf, his only opportunity to engage with language is when someone signs directly to him. (Hearing children grow up surrounded by spoken language and develop language recognition long before they actually speak. This exposure is critical to development, and Owen has not had that as he has not grown up around signing people.) Regardless of his ‘potential’, he can’t do anything and his cognitive abilities are not knowable. I will say that again: He Really Can’t Do Anything And I Have No Way To Tell What He Understands.
Now here’s my subjective truth: I accept these circumstances are real. And I accept (after a few hard-scrambling years of various interventions) that right now, especially as a single mom with my own business and another child to support, there’s nothing I can do about it. And I feel peace in relinquishing the fight against something I know I will never conquer.
I have said ‘I accept’ and sometimes it’s heard as ‘I accept my son for who he is and I wouldn’t have it any other way!’. Would I have it another way? Sure I would. I would live in a world where I get a full night’s sleep and I am not on constant alert, waiting to see if my son is going to die today. But that’s where my wishing ends because anything else is even more futile. I don’t wish my son could talk or walk or eat or hear. I don’t try to wish away his disabilities. Wishing is a waste of time. Like guilt.
Let me be clear: I don’t relish or savour Owen’s disabilities any more than I relish or savour Angus’ stubbornness or occasionally tyrannical demands. Life sure would be easier without any of it. But I can’t separate out Owen’s disabilities from who he is fundamentally. His disabilities completely mask anything below. So I take him at face value and love and accept it all.
I hear other parents’ bargains, offering up organs or limbs or eyes or their very lives if their child could do this or be relieved of that. It’s noble and righteous I suppose, but where would it get me? I choose to not engage in those conversations, with myself or others, because it takes me out of reality. It’s like a child’s negotiation with god – and it leaves me feeling empty and heartbroken and desperate. There’s nothing more depressing than wishing things were different.
I also believe this in terms of pain and suffering, and death and dying.
My child experiences pain and suffering, some days more than others. I am doing everything I can to relieve it – it’s a very human and proper impulse and one I feel deeply… but still, he has pain and he suffers. So what am I supposed to do with that? Engage in more bargains? Take on his pain as my own? Know that it’s never going to be enough but still struggle on, searching and experimenting? The rest of my journey is letting go of this self-imposed judgment and expectation (and resisting our society’s seductive opinion) that in order to be a good mother to my son I must take up the good fight and never ever stop.
Even the pain and suffering – I don’t waste any time wishing they were gone. I strive instead to support Owen through this life the best way I know how. I do what I can, which is a lot, and work to let go of the rest. By ‘let go’, I mean stop the searching for solutions that simply aren’t there and trust that what my child needs most is a calm, non-reactive presence.
This, finally, is a goal I can meet.
(photo: Owen and Grace)
Jennifer,
I have indeed done the bargain thing….I believe my husband has offered up his testicles for any takers out there…(!) and I have complained too. For me, though, that’s the beauty of the blog! It’s a place to do all those things and just let it go. In real life, I do not discuss my life with anyone in any sort of detail and in daily life I’m happy and content 99% of the time. But it has been an unbelievable relief to have found…through the occasional or frequent complaints…others who feel the same way…who, for the most part, get on with life as it has been dealt them and laugh and smile just like anyone else. Part of the bargaining issue…and yes, of course it’s futile, no one takes it seriously…is from a reaction to the insensitivity that I have come across in certain disability circles…on What Sorts, at one point, they had put up some disability “humour” and one “joke” was: What do you call a parent who keeps taking his kid to specialists all the time….(and I don’t recall the “punch line”)…then there was the post from a woman who was trying to grapple with her son’s recent brain injury…how she was grieving but felt guilty about it (!!)…and some comments tore her to shreds, said the post was oh so “Ableist” and just such unbelievable crap…from What Sorts!! THat burns me up! it was soooo insensitive and so reinforces my point that some folks just don’t get it. SOOOOO…hey, I’m OK with my life and I will continue to work toward finding ways to keep my daughter comfortable and to find solutions to her weird neurological stuff…but sometimes, I’ll offer up some body part to the lord of the blog just because!
You *are* so zen. I am working on that. I have a bit of that anger you mentioned I still need to let go of…
I also do not engage in that bargaining or wishing. I don’t have the energy to waste wishing, I need it all to fight that fight which, I am starting to understand, is not the fight I originally understood I was getting into.
Buddhist or Christian or whatever spirituality you believe in, there are always chills when you meet someone at the right time, at that moment you are wondering if you are on the right track. It was lovely to meet you today and to realise I am exactly where I should be right now.
Oh, and another thing..(what did you expect from me, eh?)…help…if you have help, it’s alot easier to remain focused and sane. I see alot of Americans with no help and I do not envy their position and can only shake my head at how they do it.
@Claire – I can (almost) always count on you to be first out of the gate :) Thanks for your comments. I sometimes get the sense that you and I are looking at the same thing from different angles – but at least we’re sitting at the same table! I appreciate your engagement.
@Lisa – Great to meet you today too! I’ll send another note offline.
Hi, I’ve come along from Claire’s blog. I’m enjoying reading your posts (and Claire’s).
I also struggle to separate my son disabilities from who he is – but had difficulty explaining it, you have done a much better job of explaining my thoughts for me!
I would love to have more discussion on the issue of “who someone is” and the disability…and I am not being sarcastic here or anything. I am genuinely confused in this area because there is SO much talk about NOT identifying with disability. It really is hard to separate one from the other…so I wonder about where the other perspective comes from…and if it’s just semantics? Don’t know about this area.
I saw this episode of House once where a kid was brought in with all these physical and neurological symptoms (I forget what) and one of them was a personality disorder – he was rude, prone to violent outbursts, sociopathic almost. They were wracking their brains trying to solve it when House realized that the personality thing was not a symptom after all – he was just an ass! So they crossed it off the list and were able to diagnose the condition.
No point really. Just saying :)
Hi Jennifer,
your book at the moment is in my mothers hands, after mine, after my sis in law! a good read with a ‘fresh’reality veiwpoint thanks for that.
Also I remember that House episode, loved it!
Hi Suzanne – thanks for writing! I’m glad the book is making its way through your family :)
I forgot about that House episode – I laughed out loud when I read about it again! Thanks for the reminder.
Jennifer
Hi Jen — This is a very beautiful post.
One of my most favourite sayings is in a body scan by Jon Kabat Zinn — “Let go of the tendency we all have to wish life was different than it is right now” and something about accepting your situation and yourself exactly as you are. It doesn’t mean you have to be happy with life exactly as it is, but that you give up internal fighting and resistance that is so destructive. It’s like a huge relief, just to accept that this is what is.
I started a post on Friday and part of it was about reading a book called The Child Who Never Grew — about raising a child with mental retardation. And in it she says something about wishing a thousand times over that her child wasn’t born with her disability. And it may be that my feelings have changed over time, but I can’t say that I have those wishes now. There is something abotu the essence of Ben that is tied to his unique challenges/way of being. In saying that, I’m not saying that I don’t wish he didn’t have physical pain (of course I don’t want him to experience physical pain!) — but there’s something about his personality and spirit that would not be the same if he wasn’t the package of attributes that he is.
To say that I wished he was born “normal” feels like a betrayal, or that I somehow feel he is of less value in this package. For all of his challenges, he also has aspects of his personality and spirit that I believe are enhanced and refined by his unique perspective.
In my mind, Ben and his journey are tied together — another child without that journey would simply not be Ben.
Perhaps this feeling is unique to having a child who is born with their disability — it is simply the way they have always been. I’m sure it’s a very different feeling when you have a healthy child who acquires a disability.
To say I wished Ben was any way other than how he is (in terms of his abilities), would be like a loved one telling me they wished I could change the essence of who I am (again, I’m not talking about physical pain here — I’m talking just about different abilities and strengths).
Thanks for helping me think this through more.
ps, love the photo of Owen and Grace
Louise, I like this post too! You know, though, I could never love my daughter more (or differently) if she were not disabled. I love her hugely and perfectly as she is. But, when I imagine a different world, she is not disabled because her particular disabilities cause her tremendous physical pain and limit her ability to participate in things like going to a mall or school even. It’s just a Mom thing to hate to see your child in pain and to wish it were otherwise…and I know you understand that. In this real world I live in, however, my daughter has to live this life for whatever reason and my job is to stand by and do what I can to make it the best it can be. I won’t ever feel bad about imaging a different scenario from time to time though. That’s just about being human.
While I “get” the zen thing (I am a studying Buddhist as well, I suppose), I find it extremely difficult to “accept” the tens of thousands of seizures that “happen” to my daughter “just because.” From what little I know of Buddhism, I’m certain that that kind of acceptance is not relevant. While I know and accept and love my daughter “as she is,” I also accept that my unique personality and person-hood compels me to stand up for her, fight for her, help her and perhaps, even, NOT accept that her constant seizures are acceptable. I appreciate the sensitivity of your post and don’t disagree, but I wonder or throw out there the thought that perhaps those of us who have had children with disabilities, live with those disabilities or even lost a child construct a world within our heads that enables us to literally live with the fact.
Hi Claire and Elizabeth — My son isn’t assaulted with the kind of physical pain your kids endure daily. I don’t know how I could accept that.
In the same way that I find nothing redeeming about the fact that my son can’t have good friends.
We are fortunate in that Ben is able to have joy in his daily life — to laugh exuberantly, to watch his favourite shows or play computer games, to ask me (in sign) what I want for Christmas, to help wrap presents, to enjoy hugs. They are limited things compared to a typical child his age, but he has some quality of life through this (a different quality of life, but not necessarily “less” quality of life). If he had medical conditions (like seizures) that stripped these joys from him and destroyed his spirit, I don’t think I would have the same feelings about acceptance.
I know I may not use the terms correctly, but in my mind life-threatening medical conditions that cause pain are different than physical or intellectual impairment (or disability) that doesn’t change over time — in terms of their impact on quality of life. I think when people talk about not wanting to change their child, it’s often in reference to a physical or intellectual disability that is static over time, and has simply become a part of who their child is.
ps, Elizabeth — I think you’re right that our minds construct a way of viewing our situation that makes it livable. I think we frame things in a way that promotes our resilience.
Interesting post, it really made me think. I agree that wishing for something that is not attainable or that cannot happen is futile. Undoubtedly pointless. Is it a waste of time? I don’t know, I guess it is, if wishing is an action that takes up time and energy or if it consumes you. I don’t know, I think it is possible to accept your child’s disability and your situation, yet still wish that s/he wouldn’t have to go through the pain and struggles and suffering that come from her disability. For me, it’s sort of like accepting the loss of a loved one. When you lose someone who you deeply love, you go through the grieving process, come to terms with the loss, accept the situation and eventually find joy in your life again – but the desire to see the lost person will never go away. I gotta admit, I feel a bit “busted” as I’m guilty of offering limbs in exchange of my daughter’s well-being. In excuse of my silliness, I didn’t really believe that anybody would take me up on my offer, it was just a rhetorical device to express my desire for her to be healthy, or to be able to eat without aspirating, or not choke on mucus. Honestly, I don’t know how to rid myself of this desire when I helplessly watch her struggle with pain or when I see her on the ventilator with multiple IVs sticking out of her body. I don’t know, maybe it comes with time, as I feel very differently about Izzy’s condition now than I did 10 months ago when she was born. And I’m sure it took some time and struggling for you as well to achieve your peace, you probably “worked” for it and earned it, and it didn’t just happen overnight. So maybe in 10 years, I will be all “zen” too :) Sorry, if my comment is a bit “muddy”, I’m still thinking through these things.
I have read about your blog from “Life with a Severely Disabled child” and I guess I’ll be a frequent visitor. I have a cerebral palsy child and I know I love him. But, there are still times that I wish he was not the way he was. I wish he can run and play like other children not for my sake but for his sake. Right now, I just comfort myself with the thought that God still has a wonderful plan for him amidst his situation. I may not fully understand the why now, but I know there is still some good in this.