Thursday, March 24, 2011

The largest eye


Ostriches evidently have the largest eyes of any land animal, and it's a myth, apparently, that they stick their heads in the sand to avoid things.

When I received the email in my inbox yesterday from Medscape, I didn't read anything I didn't already know. I sadly know several children who have died from SUDEP. Either The Husband or I have been sleeping with Sophie all of her life because of that risk.

What struck me about the article was the definitive study that was done, proving that children with uncontrolled seizures are at dramatically greater risk of early death than those whose seizures are controlled. SUDEP has other risk factors as well, and the important point to be made is that the medical community has not been as forthright as they might have been about SUDEP for a very long time. The reasons for this are many, as I said in the other post. In fact, it was in England that a group of parents who had lost children to SUDEP formed a group to explore why they had no idea that death was a risk in their children with epilepsy. It has only been a decade or so since this issue has received the attention it so deserves. A fascinating history of the disorder and the appalling lack of research surrounding it, including the story of Queen Elizabeth's uncle, Prince John, who died of the disorder, can be read HERE.

What does it mean for people like me? Other than the shock value, the ominous foreboding, the fear and anxiety that the article provokes in me personally, it actually forces me to pull my head out of the proverbial sand, talk about this issue, educate others about this issue and work harder to increase understanding and awareness around any issues having to do with epilepsy. We need to know more about this disorder. We need more money to study this disorder -- for prevention -- for management -- we need to end seizures.

So, scratch the ostrich in the sand concept. Who am I kidding? I'm the person who ran to Barnes and Noble and looked up "seizures" when the New Neurologist diagnosed Sophie and told me don't read anything about infantile spasms because it's all depressing.  I read EVERYTHING, always have and always will.

I'm going to use my HUGE eyes, read these articles and hold my head up. I know I can't control whether this fate might befall my child, but I can sure as hell learn about it and work to end it.

(but I will put my head in the sand rather than read about the increasing violence in Libya, including our country's actions, the continued grotesquery of Newt Gingrich and the hypocrisy of the Repubs in general)

25 comments:

  1. Jennifer at Yes or No just posted that the coroner listed SUDEP as the cause of son Owen's death.

    I'm proud of your big eyes! xo

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  2. I would always rather know than not know, even when the knowing is hard.

    As a side note this ostrich pic popping up in my feed reader made me snort, which was sorely needed this morning.

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  3. When Cooper was tiny we (meaning me) had to give him IV infusions of a really strong antibiotic, every four hours around the clock. It was scary - no bubbles in the syringe, or in the little IV tube, or he could die. I'm with you on this -- we do what we have to do for our children; we learn everything we have to know -- and sometimes blocking out the world (particularly the part of the world that includes Newt Gingrich) that we can't affect is how we do it. You and the hubs are incredibly brave and strong parents.

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  4. Knowledge, although painful sometimes, also makes your more powerful.

    This is a very good and heartfelt post.

    By the way, you're right, ostriches don't bury their heads in the sand. It's all a myth.

    Greetings from London.

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  5. Yes! Here's to strong-gazed women (and ostriches) everywhere. And I agree about the last, wee part- we have to choose our battles in this life.

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  6. Something about this photo is absolutely charming. That bird is so funny-looking that it is cute. It's wonderful - very cheering.

    I knew that you would do something in character, which is one of the reasons I always love reading what you have to say - you are truthful, you are true to yourself and you are a fiercely loving and resilient advocate. I hope that if I ever get really ill, someone will love and advocate for me the way you love & advocate for your family. You are the real deal, Elizabeth, and your words and actions light the way for others. Thank you.

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  7. BLOOM - Yes. I saw that right after I wrote this post. Jennifer is an amazing writer and mother.

    Allison - I know. I adore the ostrich picture, too.

    Lisa Lilienthal - Not what we originally signed up for as parents, right? Thank you for the words of support -- you are a brave woman as well --

    Cuban - Thanks for stopping by!

    Sarah - The last part is infuriating but in the grossest way!

    Karen - Thank you.

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  8. I knew you'd read it--and that you'd know what to do with it. You are a wonderful advocate, Elizabeth--for Sophie and others. And I love that you and The Husband sleep next to her. With babies, when I was sleeping with mine way back when, it was said that co-sleeping helped reduce the possibility of SIDS. There were many issues with my daughter C.--developmental, breath holding, passing out, etc. and one of the alternative practitioners (I don't quite remember which one) told me that she could be at risk for SIDS. It was the permission I needed to keep her next to me. I slept next to the subsequent kid, too. Love you. Sweet dreams to all of you.

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  9. I would have done just like you...if a Dr. told me not to read up I would have been reading and googling and asking. What pray tell do they think a parent will/would do with knowledge? Really Dr.'s need to give parents support and encouragement. How else can we protect and parent our children?

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  10. I love that you listened to your own instincts after asking the question. Something tells me you're unstoppable.

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  11. My friend Kathleen says she carries her own bucket of sand around with her. But, like you, she only sticks her head in it for things she really doesn't need to hear about.
    I admire you so much.

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  12. I did not know about this risk, so you are educating me. I have a friend, a mother of 2, who is a college professor. She began having seizures about 4 years ago, in her mid-thirties. She can no longer drive a car. I have learned a bit about what it is like to live with seizures - but there is mystery and taboo as well. Taking heads out of the sand is a good idea in this case - but I'll stick mine back in when it comes to the conservative talking heads.

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  13. You, my dear, are the true Wonder Woman.

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  14. and ostriches are fierce defenders of their young too ... they can outrun almost anything and their kick is deadly ... pity the predator that messes with them.

    And Newt is very newt-like

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  15. I always liked the part in The Swiss Family Robinson about the kids saddling and riding the ostriches.

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  16. And you have big beautiful,wise eyes and the way you view life and tackle all that you do,inspires me.

    I feel like a newbie sometimes on this journey.Although there has been more packed into 4 years than I could ever,ever have imagined I,learn from others that have been at it longer,everyday.Medically,emotionally and on personally levels.It has been a blessing and yes sometimes a curse,as sometimes I learn things and hear things that I wish my head had been stuck in the proverbial sand.But in the end, not really my personality.Tell me what we are dealing with,what needs to be done and lets do it.Take what you need and leave the rest is what I have learned.

    Thanks for coming to this space daily and showing me the way.Wishing you didn't have to on somedays,but blessed and lucky you do.

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  17. Elizabeth I closed my eyes reading this and imagined living with that. Imagined the terror I felt with Ever's struggles to breathe never ending. It's impossible to encompass of course, but gives me a glimpse into your life, your heart, what moves you and drives you, and the kind of strength, integrity and spirit you contain. Your daughter contåins. Thank you for being you and for sharing this journey. I'm reading and learning.

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  19. Elizabeth, I send my prayers, as always, to keep Sophie safe.

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  20. Always keep Sophie and your family in my prayers.

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  21. It does take a kind of un-namable courage to look into the eye of storm, information, research, reality, and (trumpets, etc), The Truth. You inspire me. Your fierce love and mother-parent inspire many.

    And your "small print" made me snort!

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  22. Love the photo! Too cute.

    Knowledge is power, man.

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  23. I would definitely do the same, even though sometimes I wish I wouldn't. But it's my nature to read EVERYTHING I can get, to research, to ask (because as you say the medical community is sometimes not forthcoming and/or sometimes they just don't know...) Wishing you peace as you read. xoxo

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