Days

Thursday by Rieshy
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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.

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:

JoAnn Hallum said...

This is beautiful. It's so tender and strong, all at once.

The Classical Circus said...

Excellent post. As a judo player who was diagnosed with autoimmune hepatitis in 2011, give your son a high five from me.

Cristy Slawson said...

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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