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Donna Thomson

Coming to Terms with Disability in Our Family, Across Generations

Rating: 6 votes, 5.00 average.
After my Dad passed away in 1975 following his third stroke, I was angry. Really, really angry. I would sit in church, look at Christ on the cross and fume, "why does everyone go on and on about YOUR suffering?! That was NOTHING compared to what my Dad endured!" All these years later, the anger has waned, but I still haven't come to terms with what happened back then. My father was too young. He was from a generation that abhorred dependency, so he suffered great humiliation. I felt somehow abandoned by 'the rock' of our family, so I floundered personally. The wounds are scarred over, but they're still there.



Nick's disability is different. The first of my two gorgeous children, he was born with cerebral palsy in 1988. In my book, The Four Walls of My Freedom, I wrote about receiving Nick's diagnosis this way:

The white haired doctor stooped to look closely at Nicholas and asked “Has anyone spoken to you about your son’s development?” “No”, I answered, “He is small because he was a bit premature at 33 weeks. Someone crashed into the back of my car at 26 weeks and they think that’s why he was born early”. Only later I learned that “development” meant cerebral palsy or mental retardation.

Three months later, Nicholas was admitted to hospital so that tests could be performed. The doctor asked me if I would like to hear the results. I nodded. She closed the ward playroom door for privacy. We were alone. She in her lab coat was sitting in a sturdy mother’s wooden rocker. I was squeezed into a plastic child’s chair. Around us lay discarded toys and empty chunky bright tables and chairs, all toddler sized. Tears glistened on the doctor’s cheeks as she told me my baby was severely disabled. “Never be normal” are the words I remember. I also remember “generalized cerebral atrophy”. Pea brain, I wondered? “Oesophageal reflux”, she said, “Nothing to keep food down where it belongs. Common in cerebral palsy. Pain similar to heart attack”. There were blue stripes on her blouse. I looked down and something red caught my eye. Blood was oozing from the edge of my thumbnail where I had bitten it. “Well, I’m in the right place”, I thought.
I stood up and felt a lightness, a sense of relief and purpose. “Now I will be able to feed my child”, I thought. “I will become an expert; I will apply myself to becoming a great mother, and my baby will grow into someone perfectly perfect.” Passing the desk, I noticed the nurses half turned, whispering, their pitying eyes fixed on us. I scooped up Nicholas, deposited him into a pram and paraded up and down the hospital halls, back straight, eyes fixed straight ahead. But I was not alright. I wrote in our baby book: “February 22-25, 1989 Nick admitted to hospital. Cat scan, PH probe and digestive barium xrays All abnormal – we trying (sic) to absorb this terrible news.”

I remember hearing a radio news report a long time ago about a terrible road accident in rural England. A young family – parents and three children - had all perished. The grandfather’s public response was “I don’t understand – we brought them up so carefully so nothing like this would ever happen”. I felt like this grandfather - the experience of falling victim to random tragedy and a serious derailment of one’s life plans caused such profound shock and questioning of all I believed was solid and true.
Now Nick is 25 and living a rich, busy and engaged life with full-time care in a home away from ours. To me, his disability is as normal for him as being able-bodied is to me. That said, his disability did derail all my life plans. But, you know what? I'm OK with it - I'm happy with the way my life has turned out. Perhaps I wouldn't be writing those words if Nick was ill or in pain, but he's not. Just a disability by itself can't hurt us.
My Mom doesn't have a disability per se, but she is getting wobbly on her feet, she's getting very, very tired and she has trouble mustering up the energy to do things for herself. When I think of my mother, I think "well, it's natural... all this getting old and needing help. It's part of nature."
Dad's disability didn't feel right or natural and neither did Nick's at certain points of his life. But in my mind, their disabilities are beginning to melt into my Mom's 'natural way' of needing help as she ages into infirmity. Maybe the cooling embers of my youthful fire of 'unfairness' are due to my own aging. I'm 59 years old and this morning, I noticed my back is a little sore and my knees quite stiff. I shrug and pour myself a coffee.
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  1. funnylegs4's Avatar
    Great post! I was born at 31 weeks with a much more mild form of Cerebral Palsy than Nick so reading your experience with a different type of CP is fascinating and I learned a lot. Thank you! To me living with CP is normal like you said. I think having CP feels normal because people like me and Nick are born with it rather than becoming disabled later in life. We don't know any other way to be. The interesting thing is I like being around the elderly because they understand my need to walk slow and use walking aids much better than younger able bodied people. Everybody becomes somewhat disabled later in life and anyone can become disabled at any time. It is not your father's fault that he died of course, but I understand that feeling of being abandoned. One thing that caught my attention in this post was how you mentioned that your car was crashed into(thank god you and Nick were ok!). I have to wonder if the crash caused or contributed to whatever caused Nick's brain damage. Not trying to hurt your feelings or anything and its still unknown what causes CP. Whatever the reason for the CP it is NOT your fault. Please continue to write more blog posts like this one. :) Happy Birthday!
    Updated 07-08-2014 at 04:42 PM by funnylegs4
  2. agate's Avatar
    A really eloquent statement--Thanks for sharing it!
  3. Donna Thomson's Avatar
    Thank you so much for your kind words! Yes, it was the car accident (we believe) that caused Nick's CP. But hey, what's the difference, right? It is what it is and we all have to just live with what opportunities and challenges we have. I just LOVE how you find camraderie in walking with seniors because of the slower pace. That is just awesome - I think that's what the non-english native english students found with seniors too - they could all slow down and practice and chat and be real. There's something really, really good in that.
    Thanks for sharing and I LOVE your film work!!!!! x Donna

    Quote Originally Posted by funnylegs4
    This quote is hidden because you are ignoring this member. Show Quote
    Great post! I was born at 31 weeks with a much more mild form of Cerebral Palsy than Nick so reading your experience with a different type of CP is fascinating and I learned a lot. Thank you! To me living with CP is normal like you said. I think having CP feels normal because people like me and Nick are born with it rather than becoming disabled later in life. We don't know any other way to be. The interesting thing is I like being around the elderly because they understand my need to walk slow and use walking aids much better than younger able bodied people. Everybody becomes somewhat disabled later in life and anyone can become disabled at any time. It is not your father's fault that he died of course, but I understand that feeling of being abandoned. One thing that caught my attention in this post was how you mentioned that your car was crashed into(thank god you and Nick were ok!). I have to wonder if the crash caused or contributed to whatever caused Nick's brain damage. Not trying to hurt your feelings or anything and its still unknown what causes CP. Whatever the reason for the CP it is NOT your fault. Please continue to write more blog posts like this one. :) Happy Birthday!
  4. Donna Thomson's Avatar
    Thank you so much! I love the blog as a form for writing my thoughts - it's much easier than writing a book, that's for sure!!! But I also love the bulletin board like Braintalk for sharing :)

    Quote Originally Posted by agate
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    A really eloquent statement--Thanks for sharing it!
  5. funnylegs4's Avatar
    Quote Originally Posted by Donna Thomson
    This quote is hidden because you are ignoring this member. Show Quote
    Thank you so much for your kind words! Yes, it was the car accident (we believe) that caused Nick's CP. But hey, what's the difference, right? It is what it is and we all have to just live with what opportunities and challenges we have. I just LOVE how you find camraderie in walking with seniors because of the slower pace. That is just awesome - I think that's what the non-english native english students found with seniors too - they could all slow down and practice and chat and be real. There's something really, really good in that.
    Thanks for sharing and I LOVE your film work!!!!! x Donna
    You're very welcome Donna! Exactly! It doesn't make any difference. Everybody has some challenge in life. I'm just more interested in the inner medical workings of CP lately. Probably later in July I might blog here about why my own disability has become more of a fascination for me. I find that the elderly are very honest too, a lot of the time, and I like that. They have a lot to teach us. Thanks for your support of my films! I am planning a blog post about my newest film. Is there anything about my filmmaking process you would particularly like to hear about??? Sorry to jump into me here. Just curious.
  6. Donna Thomson's Avatar
    Thank you for sharing! You know, I'm really interested in personal power politics and how those play out in disability. So, for example, beautiful people excluding less beautiful people, less beautiful people putting down paras, paras putting down quads or developmental disabled, you get the picture. What are the antidotes to equalizing power in society and what's wrong with listening and being friendly? Is the barrier fear? It's definitely something to do with the 'other' and I remember reading a study somehwere that said even people with severe disfigurement have these prejudices. Anyway, I'd love to see a film on that! (isn't that what the old film 'Freaks' tried to do maybe?) x Donna
  7. funnylegs4's Avatar
    Quote Originally Posted by Donna Thomson
    This quote is hidden because you are ignoring this member. Show Quote
    Thank you for sharing! You know, I'm really interested in personal power politics and how those play out in disability. So, for example, beautiful people excluding less beautiful people, less beautiful people putting down paras, paras putting down quads or developmental disabled, you get the picture. What are the antidotes to equalizing power in society and what's wrong with listening and being friendly? Is the barrier fear? It's definitely something to do with the 'other' and I remember reading a study somehwere that said even people with severe disfigurement have these prejudices. Anyway, I'd love to see a film on that! (isn't that what the old film 'Freaks' tried to do maybe?) x Donna
    You're welcome. Thanks so much for the suggestion! To me personally it has to do with valuing every single person equally. Everybody is aways going to have prejudices and some people are always going to be quote on quote "better" looking or have more physical abilities,nothing is going to change that, but if you value humanity equally there is mutual respect. When somebody looks different or has a different opinion people put less value on them,and I find it very sad. I'm working on developing a larger film project after this current one that does deal with some of this as part of the plot.
  8. Earth Mother 2 Angels's Avatar
    Donna ~ As always, full of insight and food for thought. I felt like I was in the room with you at the hospital, when the doctor began explaining Nick's test results. What a journey to now, 25 years later, as Nick thrives and lives his life to the fullest. Defying all of the odds.

    Like you, I've been on both ends of the generational spectrum with care giving and family members developing disabling conditions. Because of the challenges my boys faced, I feel that I was more understanding and patient with my elders. My parents were around the age I am now, when they passed. I felt then that they were too young, and even more so now, since I consider myself relatively "young" in senior years. In dog years, I'm Methuselah.

    When Jon was diagnosed with a developmental delay of unknown origin at 9 months, I felt much as you did with Nick. "Ok, now we know what's going on, we can attack it! We can give him everything he needs, and he will be just fine!"

    When Michael was diagnosed at 6 months, I was completely, utterly lost. And, because I asked the pediatrician, "How is this possible?" he speculated, "Possibly a double recessive gene." Thus, it became MY FAULT. Or, it became "OUR FAULT," because both the bio donor (nicest term) and I carried the same stinking recessive gene.

    So all of that "we'll do everything for him, and it will all be fine" stuff went out the window and became, "What are we going to do now?!" Fear. Panic. Guilt. A complete lack of knowledge about anything even remotely related to what we were going to face in the next 40+ years.

    Life ~ the ultimate learning experience!

    My heart goes out to you, as you endeavor to split yourself into clones to tend to the needs of your mom and Nick, and all of your loved ones, including yourself.
  9. Donna Thomson's Avatar
    Thank you, dear Rose! I simply cannot imagine how devastating it must have been to receive your sweet Michael's diagnosis. I remember thinking when I was pregnant with Natalie that if she was born with a disability, I wouldn't know what to do. I was already struggling so much to keep Nick alive - I knew I would never be able to look after another high needs child. And then, when she was born, I remember crying (hormones, I am sure!) that I was so scared - I didn't know how to look after a NORMAL baby! Of course, that was only for an hour a few hours post birth. Boy, normal neuro babies are very efficient at teaching you what they need and they are also very effective (like all babies) at seducing you into falling in love with them immediately! Anyway, thank you for sharing your thoughts and wisdom of experience, Rose! Sending you love as always, xo Donna


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