A Day In The Life: A Mother’s Guilt

Our middle son is living with us while we try to get his mast cell disease stabilized. He’s 24 now and looks the most like me of all three of our adult kids.

Like me, his life is on hold thanks to MCAS and, like me, he is pretty sick without medications. Even with them, if he gets triggered he is completely disabled by the symptoms until they pass, which can take up to a week or more.

Just like me.

Today he woke up and came into the living room and I could immediately tell he was sick. His skin tone was super pale and his eyes were really dark and sunken. He looked pretty bad. He told me he’d been on the toilet all night and I could tell he’d barely slept.

His hands and feet were ice cold, like mine were last week, too. He took his temperature and it was 96.3.

Whoa. Mine does that, too. I usually feel feverish when it’s that low, and he said the same thing. Poor guy.

Then he pulled the bottom of his pants legs up to show me the rash on his feet and ankles was still there, and had even gotten worse overnight.

So weird, I thought, since I had hives on my feet last week!

His rash is very different though. It’s not hives. It’s nothing I’ve ever seen before so we’re taking him into the dermatologist to see what’s going on if it doesn’t clear up by tomorrow. I’m sure it’s mast cell disease related since he’s also been sick with all the other symptoms but we need to have it checked either way.

It’s really hard watching my adult son go through this but I’m just glad we have one another to go through it with together. Right now he’s curled in his bed in pain and there’s nothing I can do and it kills me. Still, he knows I’m here and he knows I “get it” when no one else does.

We tried to figure out what might have caused this for him and we think it was the tomatoes in the turkey tacos. We both seem to do fine with them if tomatoes are fresh and ripe but if they are over ripe it becomes a real problem. It was the only thing different in our environment so that’s our running theory.

I didn’t have tacos so I didn’t get sick, luckily.

I worry so much about him because I know how hard this disease is to live with day-to-day and I fear for his future and mine because I know now how unpredictable this can be. The future is so uncertain and it’s unsettling.

It’s hard enough being a patient with MCAD. It’s worse being the mother of someone whose suffering you are all too familiar with yourself. You know their pain and as a mom all you want to do is take it away.

 

xo Michelle Dellene

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