The son that Trent can never be, and what to do

Recently a friend of mine, Samantha, wrote to me expressing the following feelings of ambivalence. Samantha had just returned from a trip accompanying her sister to China to help meet and greet a new member of her sister’s family, a beautiful 4-month old baby boy, whom her sister and her husband had just adopted. A few years ago, Samantha’s own 11-year-old son had suffered a brain injury that had him hospitalized for over 6 months, from which he continues to recover, slowly but steadily, though it has become obvious that there are limitations to how complete that recovery will be. Walking and talking, likely finishing school, yes, but many visible cognitive and personality, changes that most would view, and that Samantha views, as definitely for the worse. There’s much that I could write on this, but far better to leave it entirely in Samantha’s own words (with her permission), including the question she has. Samantha writes:

China was great. Because we had a 4-month old baby, we couldn’t do quite all the sight-seeing that we would have done otherwise, but it was a wonderful opportunity, and I will never forget it. It was also really nice to be invited by my sister and her husband to share such an important time in their lives with them. The only problem I had–which I did not tell them about–was that I found it rather hard to be around a baby boy who reminded me so much of Trent’s babyhood. It brought up a lot of feelings about Trent, and about the son that Trent can never be now. Maybe I still need to mourn the Trent that is now gone, but I feel guilty about mourning him, because he’s not dead. I guess I feel like if I mourn him it must mean that I don’t love and appreciate him enough the way he is now. I’m not quite sure what to do with all those feelings, but being around a baby boy sure brought them up. It’s going to be hard in some ways, I think, watching my nephew grow up to be a son I will not have now. What to do? . . . .
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13 thoughts on “The son that Trent can never be, and what to do

  1. It’s okay to feel sorrow. It’s okay to feel like your child has lost something and like you have lost something.

    It may seem like mourning and it may seem like grief, but it is something very different. Grief is ultimately a process of separation. Ultimately, this sadness can bind you closer to your child.

    That deep and aching sorrow never completely goes away. It washes back over you every now and then when something reminds you of what might have been. Feeling that sorrow doesn’t make someone a bad parent. Finding moments of joy in your son’s life and your own will make you a good one.

  2. Perhaps, because I have a traumatic brain injury, I see things differently than the parent who feels the need to mourn, to grieve, a child not yet dead. I wonder what you grieve over exactly and why. True, when anyone’s child experiences something new, that child changes and is no longer the child that you knew the moment before the experience whether that experience is becoming disabled, having sex for the first time, or moving out of the family home. Every experience changes an individual and, yet, we don’t generally mourn or grieve over these changes; we rejoice or we are indifferent but we rarely grieve. So, why the grief?

    Academically, we could discuss this in relationship to the larger society’s perpetuation of disability as personal tragedy (Morris, 1991; Oliver, 1990; Shapiro, 1994). Jerry Lewis’ and the MDA’s continual insistence that Disabled people are perpetual children, in need of pity, cure and/or death (and, yes, I’m picking on Jerry and the MDA because of recent events surrounding Lewis). From this personal tragedy perspective, my life is worth mourning but not worth living; and, I question the validity of this perspective because it does not come from a place of knowing. That is, this perspective is not the perspective of me and mine (Disabled people, the Disabled community). And this is what your grief tells me – that you believe my life (as well as Trent’s) is a life unworthy of life, as the Nazi policy would put it.

    Samantha asks, “What to do?” As someone with a traumatic brain injury I’ll give this suggestion, do your child a favor and keep your “grief” to yourself because those feelings have nothing to do with what your son may or may not be able to do and your issues will (like the rest of society’s garbage) get in the way of your son’s ability to do whatever he feels like attempting to do. He’ll see and hear enough “you can’t” from society – doctors, teachers, neighbors, “friends,” “family,” he doesn’t need to hear it from his parents. Thank Allah, the gods, the goddess, etc. that my mother never proclaimed grief because I survived — I don’t think we would be on speaking terms if she had or did.

    If you want to do something for your child (regardless of why that child is changing or changed), get out of their way and let them live.

  3. So I’m curious, ctyjewski, how you’d react to the following:

    Many people mourn when their child dies. Zach wonders what they grieve over exactly and why. True, death brings with it changes, but every experience changes an individual, and yet we don’t generally mourn or grieve over these changes but rejoice or are indifferent. So why the grief? wonders Zach.

    I take it that one common reaction would be that death doesn’t simply change a person but ends that person. That’s a properly grieve-worthy change. And that’s the all important difference with disability, or however you want to class the change from (say) being an individual without a “traumatic brain injury” to being an individual with such an injury. Disability brings with it a life to continue with.

    But suppose that Zach doesn’t think that life ends when you undergo that change that most people think of as death; all that happens with “death” is that one’s body dies. The person goes on. (This is not such an uncommon belief, after all.) If that’s what Zach believes–that the person continues through this seemingly-to-others radically bad change in one’s circumstances–does that make his puzzlement about mourning either understandable or even defensible? Does it make the common practice of mourning death itself an instance merely of the “personal tragedy theory of death”? Perhaps “yes” to “understandable”, but I can’t see a “yes” to either of the other questions here. Maybe you differ in your view here. Myself I’d say that Zach is missing something important about being human, even given his supernatural beliefs.

  4. “It’s going to be hard in some ways, I think, watching my nephew grow up to be a son I will not have now. What to do? . . . .”

    What to do:
    1. Realize that you are far, far from alone in this situation–many parents have been at the same place, or a very similar place, and they generally survived and moved forward–find them and find out how. (And of course it’s a good idea for Trent to meet other teens who have disabilities, too, if he hasn’t already.)

    2. Realize that your nephew, like all children, comes with no guarantees. You may watch him grow into an adult–or not. You may watch him grow into an adult you don’t like–it happens. And whoever he becomes, it won’t ever be the grown Trent you’ve pictured. In time, you’ll see him as a very different person, not as an echo of a memory, and that’ll make things easier.

    3. Realize that your son is still growing and changing, too, and this IS his life, not an interruption or a detour in his life. He still needs you to love him and laugh with him and all that–nothing important has changed in that regard. If you’re feeling like you’re not able to be fully there for him right now… that’s something you have to work on in yourself, and not wait for him to change. (I’m not saying that’s easy, but most solutions come easier when you know where the problem lies.)

  5. It seems to me that Samantha is going through emotions that are part of being human. I don’t believe that there is anything inherently right or wrong with her feelings.

    I have experienced a vast range of emotions since becoming spinal cord injured five years ago at the age of thirty-two. (I was training for triathlons when I was hit by a car on my bike and became a paraplegic.)

    Sometimes I get strong twinges of pain when I see someone walk or run like I used to do. I believe that grief comes and goes and can be triggered by various life experiences (as Samantha describes her baby nephew reminding her that her son is no longer the same.)

    But I can reassure Samantha that there are also life changes that can be rewarding. I am grateful for the life I still have to live. My life is in some ways richer than it used to be. I appreciate simple things I am able to do like breathe, eat, swim, work, etc. I also feel more connected to people with a deeper sense of patience, tolerance and compassion. This is truly a gift.

    There are lots of things that have changed in Samantha’s life that she will have to absorb over time. I have had to continuously strive to keep my mind and heart open to all that lies ahead. I encourage her to do the same.

  6. There is a book called
    Reflections from a Different Journey: What Adults with Disabilities Wish All Parents Knew
    By Stanley D. Klein, John D. Kemp
    Published by McGraw-Hill Professional, 2004
    ISBN 0071422692, 9780071422697
    224 pages
    some chapters can be read to be online
    http://books.google.ca/books?id=Z_OAAQP7DBIC&printsec=frontcover&dq=%22parents+without+prejudice%22&source=gbs_summary_r&cad=0#PPR3,M1

    As to this case I do not know enough about your background Samantha’s. If you were very little exposed to the disability rights/positive picture/pride whatever circle than your reaction would fall within what is to be expected. I think the human race in general is not good in dealing with especially sudden changes. I do not how how long the ago the change in Trend took place. But I assume for the average parents brought up in an ableist society where parents often have expectations about their children it is to be expected that some parents mourn as they were used to their child behaving in certain ways and now its different. But one can only hope that the parent can see the good in the child even after whatever change happened.
    To go away from your example Samantha. I would think that many parents who are brought up in a heterosexual biased society will ‘mourn’ when they find out that their child is not heterosexual. One can only hope that the parent can go beyond the initial expectation and accept and cherish the child for who it is. But I would assume it needs time. And it need the more time the more the parent was not exposed to a culture which sees non heterosexual behaviors as simply a variation and not a deviation. And we can use many other examples. Like the ‘mourning’ some ‘fathers’ and even ‘families’ do if their newborn is not a boy. If one is brought up in a culture where the boy is so important yes they will mourn but one can only hope that the mourning will recede and the father and family will accept and cherish the girl as they would a boy. One can only work on changing the culture so that the girl is as much cherished as the boy. And in general I think one can only hope that we move being an ableist society.
    Samantha, to come back to your situation. I can only hope that you can move beyond the what could have been and see and accept and cherish Trend for simply being Trend

    Not sure whether this is at all helpful to you. But the book makes some interesting reading
    Cheers
    Gregor

  7. I’m struck by what I read as a remarkable lack of compassion on the part of some commenters. Telling “Samantha” that her ableism is deeply troubling or implicitly comparing her feelings to Nazi policy does not help her sort out her emotions or advance any progressive agenda, in my view.

    Any huge change, especially an unexpected huge change, is bound to produce ambivalence, because such changes foreclose certain pathways and possibilities at the same time as they open up others. Having one’s child experience major brain injuries certainly qualifies as a huge and unexpected change, and I I don’t see anything unhealthy or un-progressive in being sad about the pathways that have been closed off, while at the same time embracing the pathways which are now open. These feelings don’t mean that you think the child is damaged goods, or that his/her/your life has been ruined.

    Wallowing in ambivalence and sadness doesn’t do anyone any good, but, at the risk of sounding like Dr Phil, understanding, accepting and moving beyond one’s initial reactions to major changes is necessary to be a good parent; and if Mama ain’t happy, ain’t nobody happy, including Trent. The more thoughtful posters acknowledged this, while not condoning pervasive and internalized ableism.

    For the sake of full disclosure: I haven’t had a brain injury myself, nor do I have a child with one, but I do have a child, and I come from a family of origin in which one member had major cognitive and neurological challenges.

  8. Many Petunias wrote: “I’m struck by what I read as a remarkable lack of compassion on the part of some commenters. Telling “Samantha” that her ableism is deeply troubling..”

    Since I wrote “I found Dick’s comment to this post almost as troubling as the post itself which is deeply ableist,” I assume that MP is referring to this remark. Unfortunately, MP has misinterpreted the remark. I did not say “I found the letter” of the post ableist, but rather the “post itself;” in other words, the post to the blog which appeared under the title “The son that Trent can never be, What to do.” What I was referring to was the way in which Rob characterized the letter, the language he used to describe Trent, Trent’s embodiment, and the prospects of his life. I actually sent a private email to Rob (which he didn’t acknowledge) in this regard after he sent the post to the blog, objecting to his language (“suffering”, “definitely for the worse”) and especially the title he gave it which, in my view, is characteristic of narratives of disabled people’s lives which cast them in tragic terms and, yes, is deeply ableist. Why not give the post a title like “Letter from a Mother” or “Samantha and her Son”?

  9. I don’t think we can stop people from feeling what they feel, and I am not sure that it is healthy to make them feel guilty about it. At the same time, I think society creates a kind of template that encourages people to think of this in particular ways, such as grieving. Most parents get over it, particularly if the disability becomes a big part of who their child is. For me, like a lot of parents, my son’s disability is so fundamental to who he is that I cannot actually imagine him without out. He would be a total stranger to me. His disability is not everything about him but it is a very big part of him, so I cannot love him without loving that part of him. I could hate his disability without hating a big part of him. That is just the way it is for a lot of parents and if they have some other feelings, they usually get over it.
    My mother expected me to grow up to be a rich dentist with nice clothes and a sports car, and may be she felt a little cheated that I never lived up to those expectations. At some point, she had to let go of that and decide if she could love her child for who he was instead of “grieving” the dashing dentist that she had hoped for. It may seem like I am trivializing this, but it really isn’t so different. What I am saying is this, if a parent can’t get past their expectations and love a child with a disability, they probably are going to be dissatisfied with any child because no child will perfectly meet their expectations. It’s okay if a parent takes a little while to work through their feelings… its a natural part of the process for most people. What I can say to any parent is if you truly know that you love your child, have faith in yourself that you will get through those difficult feelings.

  10. Shelley,
    I’m not sure that Many Petunias is referring primarily to your post, though she’s not the only one to have taken you to be referring to the content of that post, as opposed to its framing, in imputing an ableist bias to the post. And I didn’t receive any private communication from you that I failed to acknowledge, since I didn’t receive any such communication. Send it again if it remains relevant.

    What I find most striking about your comment, however, is how, in a post whose content is a mother’s own internal, honest, and very personal struggle to come to grips with her own views of disablement, what you see, or what your comment reflects you as seeing, as worthy of comment, is something about me, and Dick, and “ableism”.

    There’s a thicket of issues raised by the post itself, some of which have been taken up in the other comments on it. I’m not sure that the label “ableism” is all that useful in the context. But in any case, if it is, then anyone using it will need to reach past the person to those issues if they want their comments to be published here.

  11. At the risk of prolonging the unnecessary, I’d like to add that I didn’t find Spirit’s title for the post “ableist”, either, as stremain suggests. If he had titled it “Trent’s Life Is Crap and Always Will Be” or “The Awful Tragedy of Brain Injury and How it Makes Life Barely Worth Living”, I could see grounds for complaint. However, “the son he will never be” taps into a much broader realm of parental experience concerning the bittersweet gap between the child you imagine and the one that you actually have and love. It’s the same sentiment felt by parents coming to terms with the reality that their child won’t go to university because they want to tour with a Grateful Dead cover band; or that their child is not planning to have kids him/herself; or is transgendered; or professes very different religious beliefs; or has in some other way made a drastic and not necessarily tragic departure from the trajectory which the parents imagined, however cliched or limited that imagination may have been.

  12. Like manypetunias, I’m not sure about the value of harping on this kind of thing, but the title of the post is taken directly from Samantha’s reflection. Using it to frame the post does highlight something I thought important about that reflection, though I have to say that there was an embarrassment of riches here with a reflection that brings out so much. Best, I still think, to stay close to Samantha’s own sentiments, which is one reason (of several) that the post was run by her first.

    Amongst the more substantive issues lingering that haven’t come up yet, are:

    Most people, including Samantha herself, probably feel that there’s something awkward, misleading, or just wrong about using “mourning” to describe these hard-to-articulate feelings, something that I take to come out most clearly in Gregor’s comment. Getting to base 1 on what the problem here is, I think, relatively easy, as I think many of the comments have implied. Getting beyond that is much trickier. Why?

    One of the things in the background here is the classic “expressivist objection” to selective prenatal screening, and ctyjewski brings this out in his/her comment. But it also seems as though it’s a mistake of some kind to see only a negative expression about disablement in this case. There are other similiarities and differences between the two cases concerning policies, practices, and the personal that invite further reflection.

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