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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.

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The best place for a fit of the blues is a bathtub.  Filling it with melted chocolate instead of water would be ideal but then there's the cleanup to consider.  As a mom there is always the cleanup to consider.

Sometimes I wish I could resign.  Days like today when the exhaustion from a week + of family illnesses and hospitalizations finally hits.  Days like today when my prayers seem dusty and weak and I discover that my van's front windshield is inexplicably falling out?!? Days like today when it's gorgeous outside and my astonishing ungratefulness for all my blessings stare me full in the face.

Days like today when I want to resign.

Fortunately/unfortunately there is no one to resign to.  The towel belongs to me, if I throw it in I'll just have to clean it up- because as already mentioned- I'm a mom with the cleanup to consider, so instead I take a long bath.

The best part about blues in the bath is that eventually the water gets too cold for even the most hardy moper to hang out in and when you finally and wrinkly emerge, you are clean, dressed, and ready to go.

Blues in the bathtub, because the cleanup is included.




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The horror movie stats are in my favor. Here's the scenario  9 members in my family:  20 year old son is patient ground 0 with the zombifying virus, in our case the flu- strain A.  He passes it to 16 year old sister who succumbs because she was the red herring-heroine and one day later she passes it to 11 year old brother who, though a plucky crewman, is tragically wearing a red shirt.  With a sympathy gasp from the audience 11 year old passes it onto brothers, aged 5 and 6, probably during a wrestling match.

13 year old gets cocky and brags about her immunity so of course she is zombified next.  Father turns as well because who can shuffle around more grumpily menacing than a 6 foot father?

Mother takes 6 year old to the hospital and is put in isolation with 6 year old zombie.  Where she promptly confuses her toothbrush with 6 year old's tooth brush yet STILL doesn't become a zombie because every zombie movie needs the quirky and scatterbrained heroine who unexpectedly doesn't turn.  And because lets face it- using a sick 6 year old boy's toothbrush is just about as stupid and gross and graphic as any horror movie is allowed to get.

18 year old sister stays home and plays piano and does laundry while the zombies rage throughout the house.  Her virtue alone saves her from the apocalypse.

Phew, I'm just glad the movie is over.  Cheers to being scatterbrained.  Now on to cleaning.  They never show that at the end of the horror movie.



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