Recently Benny’s extra chromosome won us an all expenses paid seven-night stay at the beautiful Children’s Hospital of Michigan located in Downtown Detroit. He had to have his tonsils and adenoids removed, as well as tubes put in his ears. While this is normally an outpatient procedure for most kiddos, babies like Benny who have Down syndrome have higher risks and a greater incidence for complications with surgery. My sweet boy was in a great deal of pain, and wouldn’t drink or eat, so we couldn’t go home until he did. This resulted in a heart wrenching seven days of force-feeding him medicine, IV pokes, and constant vital checks. Needless to say, this Mama didn’t get much sleep.
Whenever Benny slept, I couldn’t sleep. When you can’t sleep, you start to observe things.
The mother next to us, on our first two nights there, was with her three month old who had undergone his first of many, many surgeries to repair a cleft palate. I watched her look at him, and I saw her cry. She told me it was a heartbreaking feeling because she no longer recognized him, and she hated it. He cried and cried in pain, and she was struggling with the guilt only a mother can know of whether or not she made the right decision. After all, she thought he was perfect exactly the way he was…and she meant it.
I watched as every night we were there, right around bedtime at 9pm, the Daddy of the little girl across the hall from us came out into the hallway to walk. He would walk up and down that hallway for hours every single night holding his four year old princess. He pushed her IV cart, and he held her little body close to him, and walked and walked and walked … because that is the only way his sweet girl would sleep.
I watched all the parents during the day, smiling and laughing with their kids in the playrooms and in their beds. I listened to them sing, and read, and laugh… and then I would see them in the bathrooms and cafeteria in tears. I would watch as they walked away from their babies to have their meltdowns on their own. I watched them cry, and pray, and curse, and then I would watch them pull it back together and put on their strong loving faces to help comfort their babies the best they could.
I watched these parents until my boy would wake, screaming in pain, and I would jump into action. I would use every trick up my sleeve to get him to swallow his medicine. I would smile, and laugh, and sing, and clap. I would play Taylor Swift videos and have 3am dance parties just to make him crack a smile. Then, as I would finally get him to drift off again, I would have my moments. I would shed my tears.
Now that we are home, and Benny is better, I often think about the parents I watched at the hospital. You, my friends, are my heroes. You are strong, and fierce, and a force to be reckoned with. Your love is unyielding and the things you do to keep your babies happy are never ending. I want you all to know that I see you, I respect you, I honor you, and that you are doing an amazing job.