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How I Answer 'I Don't Know How You Do It' as the Parent of a Terminally Ill Child

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“I don’t know how you do it. I would just die.”

Someone said this to us, not long ago. At first, I was taken aback for a moment, mostly because I feel ill every time I hear the word “die.” Those three letters, put together, cut me way too deep. I hate them.

This lady had shocked me. Then, I was just really confused. When I moved past the shock, I actually digested what she had said:

“I don’t know how you do it.” 

Stephanie with her husband and Blake.

I know the majority of people who are around (or even know of) Jeff, the girls and I don’t know what to say sometimes. By that, I mean words of comfort or encouragement. How could they know exactly what to say? Most haven’t been in a situation like ours and we’re on an emotional roller coaster. Some days, something could be nice to hear; the next day, the exact same thing could hurt. When words hurt, I usually try to remind myself that (almost always) they aren’t meant to. It’s very challenging, especially in the moment. Other times I get pissed off, shocked or I’ll just leave. I may do all three at once! Those times are rare, however.

I wondered if this was something people actually think. I mean, do you really wonder how we do it? How we care for Blake? How we make it through the day? How we survive?

For days I’ve tried to come up with an answer, not because I owe anyone who randomly blurts out crap or ask questions with only the motive of curiosity, but for myself. It seems so simple but I’ve come up with this:

Stephanie and her family.

We survive on love — for Blake, Kenley and for each other.

That’s really all. This is our life, nonstop, just the four of us. We live on love and it’s much more powerful than I knew it could be.

“I would just die.”

Well, sometimes I feel like that would be easier, because the pain is so great, often too much. As a mother, though, I signed up for whatever was given to me, all the wonderful and the difficult. I never thought this very hard road would be part of our life but I owe all the love I’ve got to both my babies. I also remember I have really special people, no matter where they are, who love me back. The decisions, moments, fears, get really hard. More than hard: truly, the definition of excruciating. Love doesn’t solve these things, but love does support them.

She could’ve chosen her words differently, for sure. Hopefully she meant a nice thing even though what she said wasn’t great.

I guess what I want to say is, we appreciate anyone who says or does something from a place of love: thinking of us, praying for us, donating to Cure SMA or helping families like us, even reading along like you are now. The effort and the sentiment are what matters. Thank you so much.

Follow this journey on Still Finding Sunshine

Originally published: August 9, 2016
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