In The Burroughs

Parents never know where their child will lead them. Or what their child will teach them.  

I certainly had no idea. 

My daughter Teresa was born three months early. She weighed less than 2 pounds.

Nothing in my life had prepared me for not knowing if the child I brought into the world was going to survive.  

In the middle of all that, we found out Teresa had sickle cell disease. 

I’ll be honest, learning about Teresa’s diagnosis wasn’t as scary as you might think. For the 66 days Teresa was in the hospital, we focused only on her survival. Is she getting enough oxygen? Is she getting the support she needs in the NICU? Would she be healthy once she got out of the hospital? 

After a little more than two months, Teresa’s mother and I were finally able to bring our baby home.

That’s when we started to learn more about sickle cell disease and what it meant for Teresa.  

When someone has sickle cell disease, it means some of their red blood cells are shaped like a sickle, or crescent moon, instead of being round.

Those misshapen cells don’t travel easily through blood vessels and can get stuck, which causes pain, fatigue, and other serious symptoms.  

There’s no cure for sickle cell disease so Teresa has had to learn to live with it.

Teresa is 10 now and loves to play tennis and swim, but she has to be careful that the water’s not too hot or too cold. That could cause what’s called “an extreme pain crisis” and a trip to the ER.

She also must moderate her tennis play so she doesn’t get too hot, which could also cause an extreme pain crisis. 

Teresa’s can-do attitude also has her ice skating and learning the sport of hockey. 

She is a true warrior. 

Teresa knows that her condition sometimes causes her aches and pains that other kids don’t have. She’s learned that being hydrated is important, as well as addressing her pain before it gets extreme. 

But Teresa’s not afraid of doing or trying anything. She’s taught me that I can do anything as well. 

She’s taught me how to be a better caregiver; to listen to her and make sure I’m addressing what she needs. She’s taught me to be more resilient. She shows me that if she can live with sickle cell disease and still smile, laugh and have a good time, I can face my life challenges the same way. I’ve also learned the importance of having parents who support her on a daily basis. Even though Teresa’s mother and I aren’t together anymore, Teresa knows how much we love and care for her.  

Without Teresa, I don’t think I would have ended up working at Children’s Minnesota. When I left my post in Governor Dayton’s office, I was planning to become a consultant on diversity, equity and inclusion issues. Then Children’s Minnesota called. Teresa has been coming to Children’s Minnesota for treatment for so many years that she calls it “my hospital.”  

When I told Teresa Children’s Minnesota had approached me about a job, she was excited about the possibility of her daddy working at “her hospital.” She’s still figuring out what a diversity and inclusion guy does, but she was excited just the same. 

Here’s another reason I decided to work at Children’s Minnesota: I realized that if I could do this job well, we could end some of the health disparities sickle cell patients face compared to patients of other diseases. I could work toward making sure Teresa, and other kids, are treated equitably. She would see that and possibly get interested in being part of the solution as well. 

Teresa is already learning how to advocate for herself, to articulate, “I have this pain, this is where it is and this is what I need in order to address it,” whether her parents are there or not.

She’s realizing, too, that she has her own voice to advocate in a broader way, like encouraging more people to donate blood for sickle cell patients. Especially in September, Sickle Cell Awareness Month. 

Teresa has changed my life, and my career, in ways I never would have imagined.

When she came into the world a decade ago, a tiny 1 pound 12-ounce baby, I had no idea where she would take me. I still don’t know exactly what lies ahead. 

But where she leads, I will always follow.