Living with Uncertainty
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I wonder if I project my own feelings on to him.
The mom of a 12-year old with SMA Type 1 and a trach talks about the communication challenges and how she sometimes feels guilty about leaving him.
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I wonder if I project my own feelings on to him.

I had to learn to live in the moment and not look at the future.

The unknown is the hardest part, not the day-to-day

Focus on the Here and Now

There is no planning. You’re just there, life on hold. (Or Everything is put on hold until his life ends.)

Just because your child is seriously ill, doesn’t mean you stop parenting and teaching them.

It’s hard to do but we do it.

We didn’t let ourselves think about the After, before.

The benefit and blessing of going day-to-day

When I feel myself spiral downward, I have to do something else.

You get to the point where this just Is What It Is.

I can only think out a few years.

We don’t know the end of the story but her story will live on forever.

Something always comes up. You do it again and again and again.

I’m going to keep moving forward.

It’s a suffocating feeling.

You have to have a sense of humor.
