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How I Answered a Question About the Future With My Medically Complex Son

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“We enjoy today and hope for a lot of tomorrows.”

That’s how I answered a question I was asked yesterday on one of my Facebook pages. The person was asking how to live knowing that there will likely be a “future loss.”

You might think it is a cruel question for parents with medically complex children but trust me, it’s a question that we all have struggled with.

The pain of knowing that you will likely outlive your child and the fear that you won’t — who, other than you, can you trust to care for your child? You worry about a simple cold leading to a fever and then a seizure. You worry about what you might find when you open your child’s door in the morning. You try to plan for a future, but limit the future to a few years, not decades…worried that being too greedy might somehow jinx things.

Everyone worries about their children. My daughter has no underlying conditions, but we worry about her making poor college choices that could put her in danger. We worry about her traveling alone, working too hard, falling asleep with a candle still lit. Just last night I woke up at 3:00 am and spent two hours worried that we had somehow pressured her into following a career path towards medicine (I called her in the morning and asked if she felt pressured,  “You’re nuts, but I love you.” Was her answer).

You worry about all your children, but the worry about your child with complicated medical conditions is more profound, because it is more real.

Despite all the worry, your medically complex children eventually teach you not to waste time with too much worry. You need to enjoy today because tomorrow is not assured. You need to slow down and enjoy the sunsets, the song playing on the radio, the newest episode of Impractical Jokers (my son’s favorite TV show).

I’m not saying that I never have moments where fear, despair, dread and depression take over. I bargain with the universe. I yell and cry. But, then I remember my role in all this is to help provide my son the best life possible. I get up and wash my face and move forward and enjoy today.

The parent who asked the question yesterday was new to this life. It will take some time, but I know they will find their footing and it will be their child that will lead the way.

The fact is, folks, life is fragile. We are all going to die. None of us are assured unlimited days.

Our family tries to enjoy and appreciate as many moments as possible. I encourage you all to do the same.

Photo credit: plprod/Getty Images

Originally published: February 5, 2020
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