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Monday, September 07, 2015

Parenting as a Spoonie


You and me both, Lucy.. I am sick and tired of being sick and tired. And I am sure the next most vocal voice in complaining against my illness would be my family, if they ever complained, which really they don't. But they should.. 

My kids miss out on so many things because their mom doesn't always have enough spoons to take them everywhere they want to go. In fact, some days their mom doesn't have enough spoons to even take care of herself. 

Which is why I am so thankful for my daughter. I might have mentioned this before, but I don't know how I would survive without her sometimes. She helps cook on days when I am not able to. She makes sure I don't dehydrate on days when I can't stand the lights in the kitchen long enough to get some tea. She keeps the ship running on those days when I just can't take the wheel. 

But they miss out on a lot. We've missed field trips because I woke up that morning in pain. We almost never go to park days, as the sun is enemy to me and my youngest. There are days I can't drive, so they miss classes and therapies. And there is nothing I can do about any of it. 

I am treating my migraines, I am on daily meds that have their own slew of side effects. We play with dosages and prescriptions to find that perfect balance that will allow me to live a more normal life. I have given up hope that it will ever be completely normal, but there has to be something closer than this out there for me. 

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