When Someone Asks My Medically Complex Daughter What She Wants To Be When She Grows Up

It happens when we’re standing in line at the grocery store and the sweet older gentleman behind us wants to make small talk. It happens when we’re raking leaves on a clean, clear fall day and a new neighbor stops by to meet us. It happens when we visit a different church, and when my daughter tries to make a new friend. Each time it happens, my heart sinks with nauseating dread.

“Hey there, sweetie,” they say. “What do you want to be when you grow up?”

This is apparently the universal getting to know you, small talk question for children. There’s nothing wrong with the question. I appreciate that people want to meet my daughter, and want to get to know what she enjoys and her dreams for her future. But the truth is not the cheerful chit-chat they are hoping for.

My daughter stops and quietly looks to me, then back to the questioner, then back to me. What should she say?

Alive. She wants to be alive when she grows up.

Her kidneys are failing, her liver may fail on her as well. She risks life-threatening internal bleeding at any time. She wants to be alive when she grows up.

She would like to have sight, but she knows that is too much to ask. Her retinas are dying slowly, one cell at a time. Her vision is growing fuzzier and closing in from the edges. She’s been learning Braille for two years in preparation. She would like to not be blind when she grows up.

She would like to have friendships, maybe even a boyfriend or husband someday, but relationships are a challenge for her. Her autistic mind often misses social cues. She doesn’t always understand or remember social norms. She sometimes talks too much about her interests and forgets to ask about the other person. It takes her longer than others to answer a question. She knows she might not have children, but she wants to have relationships. She wants to be surrounded by love when she grows up.

She is staring quietly at me now, pleading for help with her eyes. The check-out lane is moving, the new neighbor needs to get going, and the lady at the church wasn’t looking for her full medical history. So I smile and I repeat the line my daughter and I have chosen for this situation.

“Well, she likes to write. She’s thinking about being a writer.”

The inquirer smiles. It’s the nice answer they were looking for. It isn’t a lie, but it’s not really the truth. Not many people are prepared for the truth.

“It’s OK,” I tell my daughter when we are alone again. “They’re really asking what you love. They’re asking what you dream. There are so many things you love. Maybe someday, when you’re ready, you could tell them you’d love to work with horses – that you have a lot of dreams. If they take the time to listen, you could tell them that you will bravely go where life takes you, and that you will find joy there.”

Find this story helpful? Share it with someone you care about.

Related to Bardet-Biedl Syndrome

Macro view of color drink tin cans with cola soda beverage with selective focus effect

Before You Judge the Mom Buying Soda in the Grocery Store

One day my daughter was with me while I was running errands. We made a quick stop at a grocery store and loaded a shopping cart down with packs of soda cans. After grabbing a few more groceries, we struggled to push the heavy cart to the checkout lanes. As we got up our speed [...]
five children smiling and hugging outside

6 Things I Did to Help Find the Diagnosis for My Daughters' Rare Disorder

I used to believe that if you had something wrong with you, you could head to the doctor and he or she would run a few tests and then tell you what was wrong. It wasn’t until I had two daughters born with a rare presentation of a rare genetic condition that I realized even [...]

I Feared Her Childhood Would Be Filled With Pain. She Proved Me Wrong.

When I was 23 years old, I stood in the corner of a little room in the Emergency Department watching nurses and technicians pin down my first child. My tiny, 2-week-old daughter. She screamed for me and I held back tears as they stuck her over and over again, searching for a vein. We were [...]

When a Little Girl Asked My Daughter Why Her Belly Is So Big

The first thing the doctor noticed when my daughter Naomi was born was her club feet. It was two hours later that the nurse, who was giving Naomi her bath, called the doctor back to look at my child’s distended abdomen. Naomi was born with a rare genetic condition that wouldn’t finally be diagnosed until [...]