When My 6-Year-Old Shared What It's Like to Be Medically Complex

I’m not sure if this list would change depending on the day or how he was feeling, but my son Hartley (who has intestinal failure) saw me writing a piece for The Mighty and decided he wanted to write one, too.

I suggested a list of 10 things that describe how he feels being medically complex. He liked that idea. This is what he dictated to me.

What it’s like to be 6 and medically complex:

1. Sometimes I’m sad, bored and lonely.

2. I wish I could go to school all of the time.

3. Sometimes the things that people need to do to keep me safe also make me scared.

4. I’m just like any other kid.

5. I am afraid of germs and getting sick.

6. I love my friends and family.

7. Pretending I am a superhero makes me feel strong.

8. Life at the hospital is both fun and scary.

9. I really love my two brothers.

10. I love my life.

As his mom, I felt mixed emotions hearing him speak those words. Part of me was really sad — sad he has such big, grown-up, scary feelings at such a young age. Part of me was proud — I was so happy to hear how many of the things on that list were positive.

You always hope your children love their lives, feel fulfilled and feel good about themselves. When you have a child with medical issues that prevent them from doing things like any other kid, you worry about their perception of life.

Most of the things Hartley listed were no surprise to me. But number three really got me. My husband and I have to do so many invasive things to keep Hartley thriving and healthy. We hook him up to IV pumps, change ostomy bags and perform weekly sterile procedures. We make food choices for him and have to limit his oral fluid intake — even on blistering hot summer days. All of these things keep him safe, but none of them are fun.

When Hartley is at the hospital, his medical team have to do things to keep him safe that are also invasive and scary. As adults who’ve been doing these things to him for six years, we sometimes forget that it’s sometimes difficult, frightening and painful for Hartley to live through over and over again.

One of my biggest fears has always been that he’ll remember all the terrible things, the painful procedures, and that he’ll forget all the happy moments of his childhood.

And then I hear him list sweet number 10. Four little words that mean so much to me. Four little words that make my heart happy and the tears flow. He loves his life. Despite everything he has to overcome on a daily basis — despite feeling lonely, scared, wishing he could go to school every day and just feel good — he still loves his life.

He makes me grateful for every moment, good and bad. I hope he knows how inspiring he is and how he keeps me going. It is such a privilege to be Mom to him and his brothers.

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