My Son Taught Me What It Truly Means to Be Brave


One of the toughest things I’ll ever do as a rare disease parent is hand my baby over to surgeons right outside the doors leading to the operating room. I’ll never forget seeing his little face looking at me as the nurse carried him down the long hallway.

Then I sat in the surgery waiting room for eight hours, watching as parent by parent got called back to go be with their child who was out of surgery. I’ll never forget that feeling of longing to be reunited with my baby. Hoping the next name called was mine. I was the last person in the waiting room that night, still sitting on the sofa as night fell.

When I finally got to see my baby again, he looked so different. A ventilator was breathing for him and he had so many tubes and wires connected to him. That image is etched into my memory forever. I’ll never forget how he looked. I wanted to switch places with him. I wanted it to be me instead.

When sedation was finally lifted four days later, I’ll never forget seeing my baby’s sweet blue eyes for the first time since they watched me as he was carried away four days before.

Watching nurses hold my baby during bed changes when I still wasn’t allowed to hold him broke my heart every single time. I won’t forget how I wanted to take him and hold him myself. It felt so unfair. I wanted so badly to hold and comfort my baby.

I wish my child never had to remember all the times he has been poked, prodded and held down for procedure after procedure. The heartbreaking look on his face when he looked up at me — I’ll never forget it.

The first few years of surgeries and hospital days were the worst of it all. I tell myself the worst is over and if my son can get through all of that, then he can overcome anything else his rare condition throws at him.

My son has taught me what it truly means to be brave. If there is one thing I hope he does remember, it’s that he is resilient and he made his mommy so proud.


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