Being a parent, a Mom, is always something I wanted to be. I wanted to have two kids named Zachary and Jasmine (Jazzy). I wanted to be married to a great husband and I wanted to work in a museum. I have received both the great husband (Jason, I love you) and I worked and volunteered for the Boston Museum of Science, The New York State Museum, The Alice T. Miner Museum, The Institute for Contemporary Art, The ECHO Lake and Aquarium and Science Center and Historic New England at the Otis House.
But when I became a Mom, everything changed. I wanted to be there for my son. I listened to him. I felt his struggle and his pain. His medical, emotional and learning pain. Sam almost died twice. At birth his heart rate went so low that we were rushed to the emergency room for an emergency cesarean section. And the second time we rushed to the ER with a heart rate so high I thought Sam would stroke out and die. I am scared on a regular basis that Sam will die abruptly. There are also daily struggles with so many other medical difficulties.
Sam struggles with eating, has food aversion, and has Hypercalcemia that is in remission. I had never heard of Hypercalcemia. It’s when there is too much calcium in your blood and urine and you get calcium crystal formation in your kidneys. Sam’s was so bad that he had the start of kidney stones when we entered for a ten day hospital stay in 2017. The doctors thought Sam had the flu and had sent us home the month before with the same symptoms. Sam had gastronomy tube surgery in March of 2017 so that we could help feed Sam even when he refused to eat. Symptoms of Hypercalcemia are pretty bad and I totally understood why Sam stopped eating.
Watching your child struggle like that is watching your heart break into a million pieces on the hospital floor. When Sam was 3 months old the pediatrician found a heart murmur and Sam was referred to a pediatric cardiologist. He was diagnosed with Supravalvular or Supraventricular Aortic Stenosis which is just fancy talk for your Aorta is too small and can’t carry blood around your body. This diagnosis sent us to genetics where Sam had a FISH test done from a cotton swab of saliva. Sam was diagnosed with Williams Syndrome two weeks later, December 18, 2014.
After all of this I felt like a failure as a Mom. That I was a horrible person who had brought another person into the world with so much struggle.
What I know now is that the human body is by far from perfect and that everyone struggles with some kind of medical, mental, physical or other kind of health problem at some point in their lives.
I also know now that not a single Mom or parent is perfect. Anyone standing around thinking they are perfect will get older and start having health problems. Or they will get really sick at some point and need medical care and realize that they are not made of armor.
What I know now is that being a Mom is giving your love, time and patience every day no matter what. Be willing to listen and listen in different ways. Being a Mom is being courageous every day. Being a Mom is watching your heart walk around outside of you every day and hope that every day people look at your child / heart with love and kindness.
There are kids out there with the emotional strength of 10 men, their hearts are made of gold and bravery and they are kind, beautiful and funny. Especially my kid, my son Sam, has a heart of gold and is made of pure bravery.
I am very, very proud and happy to be Sam’s Mom, his nonny and I am not a failure.