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Thread: A very personal and very sad blog post

  1. #1
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    Default A very personal and very sad blog post

    http://www.donnathomson.com/2012/11/...-you-fall.html
    I know that some of my friends here will recognize themselves.
    xoxo
    Donna, Mum to Natalie (22), ablebodied, kind and beautiful and Nicholas(26), severe CP, non-verbal, tube fed, multiple surgeries, chronic pain, happy kid except when the Liverpool football club or the Ottawa Senators Hockey Team are losing!
    Check out my blog: http://www.donnathomson.com


  2. #2
    Distinguished Community Member Earth Mother 2 Angels's Avatar
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    ((((((Donna))))))

    I'm so sorry that you had to endure that horrible nightmare.

    What are we supposed to do, when doctors throw up their hands and say the situation is too complex for them? Are we supposed to just give up? When we see that a drug, or a treatment is causing our child adverse effects, are we supposed to ignore them and follow doctor's orders or our own instincts?

    I could write pages and pages about this, but fortunately for everyone, I'm tired right now.

    But, really, how much are we expected to handle in this life? The heartache we bear, the challenges we face, the battles we wage in the name of love. We need support, not judgment. We need help and compassion, not sloughing off because our child's needs are too complicated.

    My heart goes out to you, my friend, and I understand.

    Love & Light,

    Rose
    Mom to Jon, 48, (seizure disorder; Gtube; trache; colostomy; osteoporosis; hypothyroid; enlarged prostate; lymphedema, assorted mysteries) and Michael, 32, (intractable seizures; Gtube), who were born with an undiagnosed progressive neuromuscular disease and courageous spirits. Our Angel Michael received his wings in 2003 and now resides in Heaven. Our Angel Jon lives at home with me and Jim, the world's most wonderful dad.

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    Thank you Rose. I know you understand. But tomorrow, my next post will be full of hope because I found a doctor who inspires me - one from Harvard who is still alive and cares about understanding between medical professionals and families - he has made it his life work. Arthur Kleinman. Stay tuned, there is hope (not for help maybe, but at least understanding).
    Donna, Mum to Natalie (22), ablebodied, kind and beautiful and Nicholas(26), severe CP, non-verbal, tube fed, multiple surgeries, chronic pain, happy kid except when the Liverpool football club or the Ottawa Senators Hockey Team are losing!
    Check out my blog: http://www.donnathomson.com


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    Distinguished Community Member andromeda31's Avatar
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    Hi!

    I can remember when I read about that in your book...shocking! We never had any formal things but I do fear it...seeing so many online friends who have had it happen to them scares me! I can remember the evil looks I was getting after Caitlin's femur broke in 2010 after surgery....they kept asking if I dropped her! I was like, no she was at school and she just had surgery on that leg a week ago...it was amazing the difference how I got treated once the xray showed it broke exactly where the hardware came out. Then they were all super nice to me (they were nice to C the whole time so I can't say any bad about that). It was quite frosty before that though. And I'm sure they do see actual abusive parents in the ER so I can understand. I just hate that the finger always points to me first off. Same with her shunt eating thru her skin the one time....the surgeon said to me "How did this happen???" (in an accusatory tone) I was like "you tell me!"...geez! And that time I wasn't aware of it then, but we were put into a VEEG room so we were probably being filmed. At the time she had never had one before so I didn't know about all the cameras in there. I have a ton of these kinds of stories over the years. I hate feeling like I have to prove myself all the time. So glad that many of our relationships with providers have been so long term that they know us well. Most of the bad interactions are with staff new to us....residents or down in Milwaukee where it's always changing doctors....

    Lisa O.
    Lisa O: mom to Caitlin (14-CP, VA shunt, seizures), Brandon (12), Tyler (10), Logan (7)...my babies are all getting so old!!

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    Hi Lisa, Oh I remember you telling me about the break in Caitlin's leg and what happened with the attitudes about it before and after the xrays. Sheesh, we parents cannot catch a break and what burns me up is the assumption that because of the disability, we would automatically be more likely to want to abuse. Well, I'm working on a new idea for our community of families. Stay tuned! Sending a HUGE hug to you and your family! xD
    Donna, Mum to Natalie (22), ablebodied, kind and beautiful and Nicholas(26), severe CP, non-verbal, tube fed, multiple surgeries, chronic pain, happy kid except when the Liverpool football club or the Ottawa Senators Hockey Team are losing!
    Check out my blog: http://www.donnathomson.com


  6. #6
    Distinguished Community Member Earth Mother 2 Angels's Avatar
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    ((((((Lisa))))))

    If one of your boys sustained a broken bone, while playing for example, do you think that a doctor would immediately suspect that you abused him resulting in that broken bone?

    I'm going to guess that the answer is "no, a doctor wouldn't do that, as the doctor is used to seeing boys with broken bones from playing."

    So, why did the doctor assume that you'd dropped Caitlin, when her femur broke?

    It's discrimination against Caitlin and you.

    I have a theory that the people, who work with our children (teachers, doctors, therapists, etc.) view us as overworked and stressed beyond coping. If we're aggressive and demanding in obtaining what our children need, then we're perceived as pushy or even hysterical. If we present our knowledge about our children and how they respond to certain drugs, or to pain, then we're accused of thinking we're doctors and diagnosticians.

    Then, there is a layer beneath these perceptions, where we are perceived as harboring resentment that our children were born with a disability, and that we have a repressed anger. This is because others see our children as burdens, because in their minds, a child with the same condition would be a burden to them. I call it the "I couldn't do it, if I were in your shoes" Syndrome. Since they believe that they couldn't cope, they can't conceive that we can cope.

    Mix all of those ingredients together, and we get this image of us as emotional, on the edge of breakdown, frustrated, because our children's issues defy medical professionals' knowledge, exhausted, vulnerable, raging women, who might just lose it and take it out on our kids or try to find a clever way to dispose of them permanently.

    So, now we've been stereotyped by people, who generalize and project, and who don't even know us.

    I'll bet that if I ran into some of those educational and medical professionals of our past now, they'd look at me incredulously and say, "You can't possibly still be sane!" Not to my face, of course!

    This is one of the reasons why I tell anyone and everyone our life story, so that they know the absolute joy we've shared, and that my sons are a blessing and never a burden. And I readily admit that I'm tired, stressed, and old. But that doesn't mean that I'm not coping.

    ((((((Donna))))))

    I'm looking forward to reading about your ideas and about Dr. Kleinman.

    I'm not as brave as you and Lisa are in sharing your adventures into this realm. Some of them are painful to recall, some are upsetting and anger me, even though they are long past. We lived in a much different time too.

    My theory of how we might be perceived by others may be off the mark for this century, but I don't really think it is.

    It isn't easy to be us. But at the end of it all, only one judgment of our work here will matter. And it won't be coming from anyone on this planet.

    I know that I've made plenty of mistakes, but my Boss knows my heart.

    Like He knows yours, and all of ours ~

    Love & Light,

    Rose
    Mom to Jon, 48, (seizure disorder; Gtube; trache; colostomy; osteoporosis; hypothyroid; enlarged prostate; lymphedema, assorted mysteries) and Michael, 32, (intractable seizures; Gtube), who were born with an undiagnosed progressive neuromuscular disease and courageous spirits. Our Angel Michael received his wings in 2003 and now resides in Heaven. Our Angel Jon lives at home with me and Jim, the world's most wonderful dad.

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    Rose, you are right! You are right! We are under attack absolutely. But Nick is in a very safe place and there is nothing I can say now that could hurt him - and I would NEVER talk about the present (all my conversations are about the past and about big ideas as they relate to things that happened to us in the past). Just adore you guys here, I know you understand everything - why don't we just give up this typing thing and communicate by thought transference? xD
    Donna, Mum to Natalie (22), ablebodied, kind and beautiful and Nicholas(26), severe CP, non-verbal, tube fed, multiple surgeries, chronic pain, happy kid except when the Liverpool football club or the Ottawa Senators Hockey Team are losing!
    Check out my blog: http://www.donnathomson.com


  8. #8
    Distinguished Community Member andromeda31's Avatar
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    To be fair...I did get the hairy eyeball when I brought Brandon in for a broken bone! He was 18 months old and crawled out of his crib and broke his collarbone! Ugh! It was actually 4 days before we were moving into our house we live in now at which point we were going to put him into a toddler bed as we knew he was close to getting out of the crib. That was hard! I kept saying "I wasn't even in the room!" which I wasn't....I was helping Caitlin get dressed and I heard a big thunk when he hit the floor. I was stuck on the floor in C's room with her in my lap...trying to put her down so I could see if he was ok. By the time I got her down he had walked into her room crying so I was glad he didn't break his neck, but when I checked him over I could hear the collarbone clicking where it was broken (really gross!). He didn't really talk much yet at that age so he couldn't say to them how it happened. And our regular doctor was off that day. So glad the other boys haven't hurt themselves!! (knocking on wood right now...)

    Lisa O.
    Lisa O: mom to Caitlin (14-CP, VA shunt, seizures), Brandon (12), Tyler (10), Logan (7)...my babies are all getting so old!!

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    Oh wow. It's just impossible to keep active children safe when you are looking after one with SN. I remember my daughter Natalie trying to escape out the fifth floor window when she was a climber and Nick was young and very needy. We had to board up her window and remove her bookcase because one night I found her sound asleep on the 6th shelf! It's a good thing she didn't break anything!!!!! xoDonna
    Donna, Mum to Natalie (22), ablebodied, kind and beautiful and Nicholas(26), severe CP, non-verbal, tube fed, multiple surgeries, chronic pain, happy kid except when the Liverpool football club or the Ottawa Senators Hockey Team are losing!
    Check out my blog: http://www.donnathomson.com


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