Editor’s Note: Patient Worthy is honored to present this story, shared with us by our friends at the Courageous Parents Network. Originally written by Dr. Adebimpe Adewusi, the article can be found in its original format here.
I’m the baby of the family, and I take that to heart. I’m also my father’s favorite. I try to tell my older sister and brother that, but they don’t believe me.
I can also confidently say I have one of the best big sisters in the world. She would drop everything to make sure her kid sister is okay. I always knew that about her, but it became especially clear after my daughter was born.
For a while, my calls to her must have felt like an unpredictable emergency alarm. I feel bad because I think the fact that I called my sister so often, at all hours of the day and night, caused her to have anxiety when my number buzzed her phone. She always answered with a sense of urgency, assuming something was terribly wrong.I would call her just crying, without much to say, maybe just to talk through another difficult day in the NICU, another hospitalization, another surgery that was needed, and everything in between. It’s only over the last couple of years that her tone has softened when I call, and she seems calmer.
Those first two years of my daughter’s life were probably the roughest not only for me and my husband, but for my sister as well. Sometimes I just needed the sound of her voice to calm my panic around the decision to do a tracheostomy for my daughter, despite knowing a secure airway was the only way she was going to leave the NICU. There were decisions that I understood intellectually but could not yet bear emotionally. Sometimes I didn’t need another medical opinion. I just needed my sister.
She would join me at church, where I often just wept as I listened to the pastor’s sermon. My sister would put her arm around me and simply be present. She didn’t ask questions. She just wanted me to know she was by my side and that I was not carrying this alone.
When I wasn’t able to explain, for the hundredth time, what was happening with my daughter or what procedure she was about to have, my sister (also a physician) offered to be my mouthpiece, realizing that every time I had to explain our circumstances, it was incredibly hard and emotionally exhausting for me.
That may have been one of the greatest gifts she gave me. She understood that sometimes advocacy begins with simply not having to tell the story again. She could explain the medical details when I couldn’t find the words, but she also knew when the details didn’t matter—when what I needed most was for someone to sit beside me and let me fall apart.
Most people seek the comfort of family when times get tough. Yet not all family members know what to do or say. My sister didn’t always know what to say, and she didn’t always need to. She still picked up the phone. She knew how to listen. She was willing to speak for me and was able to sit quietly beside me. She knew when I needed medical expertise and when I needed none of it.
Families of medically complex children need people like that. People who aren’t afraid of the hard phone calls. People who will sit with you in the silence. People who will help carry the story when you are too exhausted to tell it one more time.
Dr. Adebimpe Adewusi is a Nigerian-born, Texas-raised pediatrician based in Portland, Oregon. In 2014, while completing her child abuse fellowship, she became a special needs mother. Since then, life has been a whirlwind of balancing her career, marriage, and raising a medically complex child.
Outside of medicine, Dr. Adewusi enjoys improvisation and running her social media TV and movie review page. Through sharing her story on CPN, she hopes to offer a unique perspective on parenting from someone who was both trained to guide families clinically, but now finds herself navigating the uncertainty firsthand as a parent.
