Translation:
Hyperinsulinism
When I was born I had a seizure. My eyes were going back and forth, I was eating my Cheerios, I couldn’t find them. I couldn’t see my mum either. I was brought to the hospital, the doctors said I was having a seizure.
As I grew up I kept having the seizures and bad temper tantrums. My mum didn’t know why. She called every doctor but they did not find her (answers).
I grew up even more, I got medicine that would make me grow hair everywhere. I have thick hair and little hairs on my arms and legs. I always feel embarrassed when people ask me why, it’s not normal.
I had some problems with my body, I had to go through terrible stuff but my problem has given me a special title that I love.
This had me completely in tears. I’ve only ever known hyperinsulinism from an adult point of view and never truly considered the impact it has on children, as Penelope is only 17months. How amazing are these kids?!
To learn more about HI, please visit: http://congenitalhi.org/congenital-hyperinsulinism/
💙
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December 1, 2015 at 2:16 am
Awe!! My oldest son is 12 and has a rare disorder called Hyper Immunoglobulin E Syndrome (HIES) among other ailments that stem from the same genetic abnormality such as severe food allergies, chronic hives, and asthma. I found he definitely views a lot of things related to his disorders very differently than we do, on several different levels. (we had a similar discussion over a medication with side effects that bothered him) Recently I let him read some of the things I have written about him and our experiences. He cried and hugged me and choked out, “I just want you to know how thankful I am that you’ve taken such great care of me my whole life.” And many of the stories I documented were my despair over what I saw as failure to take proper care of him on my part (we nearly lost him last spring). So from my point of view I’m struggling to keep up with his health, and from his point of view I am the all-saving hero. It did me well to hear his side on that. And of course made me cry like a baby! Children with special medical needs can be the greatest teachers in the world. I adore that letter. #fartglitter
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December 1, 2015 at 9:47 am
Ah thanks for reading! Your son sounds amazing too! These are some of the strongest kids I know! We were told Penelope wouldn’t make it past day one and that wasn’t even related to her hyperinsulinism, she’s taught me a thing or two! They really are an inspiration 💙💗 xxx
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December 1, 2015 at 9:40 am
Wow this is really moving. It’s so amazing how kids take things in their stride and can write so maturely about it. #TwinklyTuesday xx
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December 1, 2015 at 9:45 am
They’re some of the bravest kids I know! Thanks for reading x
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December 1, 2015 at 11:12 am
What a great expression and such resourcefulness and optimism from one so young. #abitofeverything
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December 1, 2015 at 11:20 am
Thank you for reading! This little one is wise beyond her years! I’m so glad she wears her title proud 🙂 xx
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December 3, 2015 at 4:29 am
Wow, I’ve never heard of this problem before. What a heartfelt and touch letter, especially from someone so young.
Thanks for linking up to #fartglitter x
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December 3, 2015 at 1:39 pm
That is so heart-wrenching reading it from their innocent perspective. But I really love that last sentence – “I had some problems with my body, I had to go through terrible stuff but my problem has given me a special title that I love.” Beautiful. Thanks so much for linking up to #coolmumclub lovely xx
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