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Today is Rare Disease Day.
My two youngest sons have a rare disease in the class of Fatty Acid Oxidation Disorders but even so I don't understand what having a rare disease day really means. It definitely isn't a celebration as fun as Valentine's Day or Mother's Day.
Because everyday is rare disease day at our house. Everyday I give medicine out 5 + times a day. Everyday I carefully monitor diet and energy levels. Everyday my boys deal with bodies that don't run at full efficiency.
But everyday also has the potential to be a great day.
Yesterday included.
My 6 yo just started Mixed Martial Arts. The MMA school knows all about his illness and are happy to have him. I don't know that I can adequately explain how that one fact makes me want to cry with happiness. I also can't adequately express how happy it makes me to see him in uniform, on a mat, smiling, after seeing him weak, sick and exhausted in a hospital bed twice already this year.
So the only use I can think of for Rare Disease Day is to remind ourselves that: if you have a healthy body- use it, and if you have a body with rare disease- use your body anyway, in whatever way possible.
Today is Rare Disease Day.
My two youngest sons have a rare disease in the class of Fatty Acid Oxidation Disorders but even so I don't understand what having a rare disease day really means. It definitely isn't a celebration as fun as Valentine's Day or Mother's Day.
Because everyday is rare disease day at our house. Everyday I give medicine out 5 + times a day. Everyday I carefully monitor diet and energy levels. Everyday my boys deal with bodies that don't run at full efficiency.
But everyday also has the potential to be a great day.
Yesterday included.
My 6 yo just started Mixed Martial Arts. The MMA school knows all about his illness and are happy to have him. I don't know that I can adequately explain how that one fact makes me want to cry with happiness. I also can't adequately express how happy it makes me to see him in uniform, on a mat, smiling, after seeing him weak, sick and exhausted in a hospital bed twice already this year.
So the only use I can think of for Rare Disease Day is to remind ourselves that: if you have a healthy body- use it, and if you have a body with rare disease- use your body anyway, in whatever way possible.
And, if you are thinking of studying medicine: above is a precious face of one rare disease- please, please consider the field of genetic inborn errors of metabolism.
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3 comments:
This is beautiful. It's so tender and strong, all at once.
Excellent post. As a judo player who was diagnosed with autoimmune hepatitis in 2011, give your son a high five from me.
Love this! You captured (yet again) so many things I would love to say. Thankful for your gift of writing, but even more for the gift you and your children are to each other.
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