I had an opportunity to be in Boston a few days ago – and to visit Children’s Hospital Boston. A fellow Minnesota family is there right now with their 8 month old baby girl, recovering (beautifully) from a heart surgery at the hands of Eve’s surgeon, Dr. del Nido (their cardiologist at the University of Minnesota Amplatz Children’s Hospital is also ours, Dr. Kochilas.) Baby Maddy’s room was two doors down from our old room – 8E, right across from the nurses station. It all came flooding back.
It was 3 years ago this week that my husband and I flew our 3.5 month old baby from Minnesota to Boston to fix her heart. She had just a couple weeks left to live. I don’t remember being anxious or afraid. I remember being confident. We were doing the right thing. She was going to come home with us and grow up to be a happy, healthy girl. Somehow I knew this to be true.
I’ve told people many times since, that it was our mission at that time to never bring fear or pain into Eve’s ecosystem. No matter how tired, discouraged or nervous we were along her difficult newborn journey – we were always positive and upbeat around her hospital bed. Always.
There was always a scarf in her little isolette that smelled like mommy or daddy. We must have recited Brown Bear, Brown Bear a thousand times. We played the Disney Lullabies CD over and over. And that musical seahorse. I still wake up hearing that sometimes…
Even during pokes and painful procedures, we would just tell her how we were sorry, but that she was so very brave and strong. She needed us. That is certain.
Sometime when we took a walk outside her room, it was all we could do to stand. There’s no way to explain this type of sheer exhaustion unless you’ve been there. We needed others – to lean on when we left her room. Our hearts shine from the friendships we have gained because of Eve and her broken heart. For every lost friend (unfortunately there were some), we have gained 10 new ones.
One of the great human tragedies of pediatric disease is the loss of friends, family, support systems. Again, no one can understand unless they have been through it. Nearly every day, I hear a heartbreaking story of how a best friend never came to visit the hospital. How parents, brothers, sisters…and yes, even spouses, just bail. Sick infants are not the things of story books and fairy tales. Tubes, wires, monitors, cuts, stitches, blood. Congenital heart disease is an abomination. No child should have it. Period.
But until the day when children suffer disease no more, reach into your soul to BE THERE for those you know going through a traumatic health experience with their child. BE THERE for those you barely know. And BE THERE for those you don’t know. Suck. It. Up.
Eve is 3 now. She is the happy little girl I promised her she would become. And someday soon, I hope we can share her amazing story with her – and teach her one of the most valuable word in the human vocabulary: compassion.