Twenty-one years ago today I learned what being a mother truly meant. After three hours of trying to push a 9 pound three ounce baby out the way most babies travel, I begged for a C-Section and was granted one.
Minutes after the doctor carefully made the incision into my wounb I heard the cry of my baby boy, who I had waited nine long months to hold.
I’ve always been a very visual person. I have a great imagination and I can look into the future and imagine how things will play out. In work, in fun activities–things don’t always happen as I imagine them, but I could always ‘see’ something. But every time I looked into that empty crib that has been sitting for six months waiting for Sean’s arrival, I could not see a baby. At the time it didn’t bother me. But when Sean was whisked away to the Neonatal Intensive Care Unit I panicked.
In my mind I immediately realized why I had not been able to see a baby in the crib. In my mind I knew it was because there would be no baby in the crib. My baby wasn’t going to make it home.
Because of my C-Section I was unable to sit up without immediate nausea. The nurses kept telling me to stay still, I wanted to go with my baby. I was in prison in my beautifully furnished hospital room.
The Pediatrician came to report his findings. “Sean has low blood sugar and we are giving him an IV to bring that up. We have detected an infection, it appears he has ingested Meconium with his long stay in the birth canal and has pneumonia….”
At this moment I knew he was going to die. Jim Henson, the creator of the Muppets had died a few days earlier of pneumonia. That was it! That was why I couldn’t see my baby in the crib.
The crib with Rainbow Zebra bedding, that cost a fortune, but it was so bight and colorful. The book that went with the bedding had resonated with me. “Unique and different.” Even though the Rainbow Zebra was different he was still special. All my life I had been the different one. Adopted. Trying to fit in. Like the Rainbow Zebra I had left a place where I didn’t feel like I belonged and moved to California where I fit in. I made friends who didn’t care how weird I was. Different was accepted, encouraged, embraced.
I met my wonderful husband who didn’t judge me when I had outlandish ideas, and supported me when I decided to change careers. When I would go on a mission to change something in this world. And loved me anyway when the careers and missions didn’t work out.
And then the doctor said the words, “Sean also has some facial characteristics that suggest he has Down syndrome.” He looked at my parents standing there and said, “They used to call it Mongolism.”
My blood boiled. I had heard that term before, and it had not used been in a nice way. My Mama Bear was ignited, nobody was going to degrade my baby. I looked at that doctor and said, “Never use that word again. Isn’t Down syndrome what that actor Corky on ‘Life Goes On’ has?”
I sent Rick to the NICU. He stayed with Sean and talked to the nurses, I was alone with my imagination. Every 15 minutes pushing the bed controls… raising the head of my bed to try to sit up, until the wave of nausea hit and send me back to the flat position. Rick came back with a Polaroid picture, Then he walked to the mall across the street and found a bookstore and bought a book. Yes, Sean looked like the kids in the book. While his labs wouldn’t come back for three days, I knew he had Down syndrome.
Fourteen days later Sean and I attended our first Infant Stimulation session. It was a group of about 15 mothers and their babies, and we were learning how to perform physical, oral motor and occupational therapy techniques in a Mommy and Me type setting. Afterwards there was a parent discussion session led by a psychologist. I was so thrilled that I had a baby in that crib, looking at the Rainbow Zebra. I didn’t care that he had Down syndrome. He was my baby, he was my flesh and blood. The first blood relative I ever had. And one of the mothers shocked me in that setting. She said the day her son was born with Down syndrome all she could think was, “Maybe he will die and I won’t have to do this.”
The idea was so appalling to me. But later I realized that once again I was the weird one. That most parents are shocked at the diagnosis and most parents don’t initially accept their babies. Most parents have been able to see a baby in their crib. I was spared that disappointment by not being able to see into a future that was different than any I could have imagined.
So another mission was born, and I wanted to support parents to let them know that having a baby with Down syndrome was not the end of the world. God game me Sean, God gave me this mission.
I didn’t know it when Sean was born, on October 6, 1993, but October is Down Syndrome Awareness Month. Well, I definitely became aware of Down syndrome that month, and here I am twenty-one years later, thankful for that awareness. Thankful for the support of National Down Syndrome organizations and doubly thankful for our local Down Syndrome Association of Orange County. Thankful that I learned that a mother is a mother no matter how her child is born.
Tonight Sean will have his first beer with Dad at Monday night football. O’Douls is the beer we told him was the best to order! On Saturday we have rented a limo to take him and his friends dancing at a night club. Watch for those photos, certainly to be a fun night, just a continuation of the fun ride of being Sean’s mother for the past 21 years. Not one moment would I trade for anything anyone else considers ‘normal.’ Because being a mother truly means acceptance, embracing and supporting whatever child we have.