Tuesday, May 1, 2018

Benignity and Trickery



I'm going to tell you about what might happen to siblings of kids with complex medical needs. No matter how conscious you are about giving them equal time, things slip through the cracks, stuff is blown off, "little stuff" is overlooked. Oliver complained about pain in his finger for a year. I acknowledged it, but I also blew it off. I blamed it on diet or inflammation. You need to stop eating junk, I might have said. How bad could it be? Both Oliver and his brother Henry are strong in every way. They are strong and sensitive. They are honest and funny as hell. Like their sister, except they haven't gotten as much attention. It turned out that Oliver has an aneurysmal bone cyst. Benign but tricky. Today he had a second surgery to remove it as the one in December didn't work. The tumor came back, began eating into his bone. Hopefully, today's intervention will last. I sat by the bedside in the recovery room for hours, running my hand through his hair, watching my nearly grown boy sleep off the drugs they gave him. He made jokes in his sleep, smoothed all my rough edges worn thin by time in hospitals those weird hours ticking by. Precious child. Brave children.

I'll be catching shit for the "inflammation" and "too much sugar" talk -- but that's okay. We all need to be humbled and set straight.

Power to the siblings.


14 comments:

  1. As much as we try and as much as it is expected, mothers cannot be perfect all the time. It's such a burden and it never ends.

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  2. I actually have tears reading this. Don't beat yourself up. If we're honest, most mothers can find a time to feel they should have done something differently, Right now you are doing what Oliver needs for sure--your soothing presence by his bedside. Heal well sweet boy and know that you are loved.

    Best,
    Bonnie

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  3. Power to you all. Dear Oliver.

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  4. As parents we catch shit for all kinds of things, deserved or not. Who knows us better than our offspring?
    I've no doubt your children adore you. You are adorable. XXOO

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  5. I absolutely FORBID you to have guilt about this situation. EVERY MOTHER IN THE WORLD has ignored something she should have paid more attention to. Not to mention fathers. Parents of kids with disabilities. Parents of a bunch of kids. Parents of an only child. It happens. It happens. To all of us. My best friend in high school fell when she was a little girl and hurt her arm. Her father, a doctor, looked at it and said it was sprained. After a few days of continual pain, the mother finally took her to get an x-ray. It was broken. And oh- the stories I could tell on myself! The important thing is that you have paid attention and gotten the proper diagnosis and treatment. Now. Oliver's strong body will heal and be fine. You are an amazing mother.

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  6. Looks like this was the right time for healing. Bless you and your children.

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  7. As Ms Moon says, I feel like this kind of thing happens in every family. I certainly hope this surgery does the trick. Power to all of you and to Oliver!

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  8. I hope that this surgery will correct the problem permanently. It is always difficult, when we're caring for a Family, to evenly distribute level of care and keep the balance, I also believe it happens in every Family.

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  9. Power to the siblings. Not enough has been made about them (and that is not our fault). Ilonka and I have been discussing this very topic.

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  10. So adore that Oliver. Respect you greatly for the fact that you home schooled him so that he could thrive. <3

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  11. Sending love to you and Oliver. All a mother can do is all a mother can do. You do what you do well. We are all learners here.

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  12. Like the time my sister had a ruptured appendix and my parents were sure she was crying because she was 'difficult'. She was about 2 years old. She lived. But there were 5 kids and WE ALL make mistakes. No matter what we do.

    I see you running your fingers through your boy's hair. Sweet boy.

    X Beth

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  13. Reminds me of the guilt I felt, and sometimes still feel when I think of it (twenty years later), when my son complained of his hand hurting all day after he got angry and punched the wall during an argument with his sister. The spot where he punched the paneled wall happened to be right over a stud behind the paneling, so he didn't punch a hole in the wall. My words to him still echo in that guilt chamber of my brain, "anyone who punches a wall is going to have a hurting hand afterward". The hand didn't look bruised or swollen to me and he was still using his hand for things other than punching. By the second day, he was still complaining. I still didn't think it looked swollen, until I looked at it from different angles and then I did notice a bit of swelling. We took him to the orthopedist, and yes there was a fracture. It was called "a boxer's fracture". I was a bad mom that time. He was in a cast for six weeks. As far as I know he has never punched another wall.

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  14. You are so right about the other kids getting short-changed despite our concerted efforts to give them equal time.
    Here's a story similar to Oliver's: Years ago one of my daughters, at around 8 years old, told me repeatedly that her ear lobe hurt because there "there was something inside it". I didn't pay attention and since she had pierced ears I presumed it was just swollen from a slight infection. So I kept applying antibiotic ointment.
    This went on for many weeks. Eventually I listened to her and discerned the earring clutch deeply embedded in her earlobe. We rushed to the ear doctor to have it removed.
    I hope Oliver is fully recovered by now.

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