When your sick child isn’t a child: my adult daughter gets the diagnosis of Crohn’s disease

My daughter was diagnosed with Crohn’s disease last week.

This is a tough diagnosis to get. Crohn’s is a type of inflammatory bowel disease. There are lots of good treatments and reasons to be optimistic, but it is a disease that can bring pain and risk—and it is forever. There is no cure.

Michaela’s had stomach problems for years that have never been fully clear, despite various appointments and tests. Things had seemed better, although she still had vague complaints that came and went. At the end of her winter college break, she told me about some new symptoms. I thought about calling her pediatrician and the pediatric gastroenterologist she’d seen, but Michaela is 20 years old. It was time, I decided, to officially move her out of pediatric care and into adult care. With the help of writing colleague and All-Around Great Person Dr. Lori Tishler, she quickly got appointments with an internist and gastroenterologist at Brigham and Women’s Hospital, right near her college campus.

Do I go myself?, she texted me. You can do it, I told her. I will be there if you want, but you can get there yourself and do this, you are old enough.

I’ll do it myself.

I took her to the colonoscopy, but they took her in without me—it was so strange to be left behind in a waiting room, to be The Ride, not the one to hold her hand and hear everything before her, instead of her.

She went to the follow-up appointment herself—the colonoscopy had gone well, they saw something but we hoped it wasn’t anything. I was seeing patients when she sent me a text:

I have Crohns disease

I called her. It’s going to be okay, I told her. This is going to make your life more complicated, but there are lots of good treatments. She was starting to cry. Do you want to come home this weekend?, I asked, fighting back tears myself (we mothers are not allowed to cry in these situations). No, she said, I have plans.

“If she were younger, I would know how to be. I would take charge. But she’s an adult, so I can’t do these things.”

If she were younger, I would know how to be. I would take charge. I would talk with everyone involved, set up her appointments, be there for every single one, tell her what to do. But she’s an adult, so I can’t do these things. Nor should I; this is her disease, which she will be dealing with for the rest of her life. The sooner she learns to manage her health and her health care by herself, the better.

But she is my child. She will always be my child.

This is new territory for me, but it’s old territory for so many parents of children with chronic disease. I’ve been thinking about the patients I’ve transitioned to adult care, and understanding more than ever before how their parents felt. At some point, one has to let go and let them do it themselves—but this is different than handing them the keys to the car. This is about their health, their life. There is so much at stake.

Maybe it’s lucky, in a way, that Michaela got this diagnosis after moving out of pediatric care. There is less to hand off, less disentangling, no need to make new therapeutic relationships. There is less to navigate—although we still have navigating to do.

We talked on the phone; she hadn’t looked at the websites I’d sent her yet. She promised she would, and that she would get her medication from the pharmacy. We talked a little about Crohn’s; she sounded sad, but calm. Of all my children, Michaela is the one most capable of dealing with something like this. She is incredibly responsible, but more than that, she has always been the best at rolling with the punches, the best at finding joy and fun in small things. Over the years, I have learned so much from her.

I asked about her next follow-up appointment. I’d like to be there, I said.

I’d like you to be there, she said, and my eyes filled with tears.

I can’t say: I’m in charge. Do as I say.

I can say: I’ve got your back. Forever.