In 2003, my husband Jeff and I longed for a life with a baby boy. So, at age 34, we were off for our first prenatal visit. With two girls at home, we were desperately hoping that this would be the pregnancy that would give us that baby boy.
At 34, I never thought of myself as being old. Actually, I never gave it much thought until my OB suggested that I have an amniocentesis done. Jeff absolutely refused. There was no reasoning with him. I, on the other hand, wanted it done. Being a nurse I knew the responsibility a mother has to commit when a child is born with a disability. I was not sure I wanted to risk having to make that commitment. We argued many nights about the amniocentesis. One night I was furious and done arguing about it. I just finally agreed not to have the amniocentesis but remember mumbling under my breath, “If there is anything wrong with this baby, like Down syndrome, it is going to be all your fault.” (If only I had known).
In November, Jeff and I went for our first ultrasound. The news we received was shocking. Twins! I knew that there was never a chance that I would ever receive more shocking news than that. Twins! We were being blessed with two baby boys. From that point forward the boys became known as Baby A and Baby B. We were so in love with the idea of having two baby boys! Our journey was just beginning.
The journey or pregnancy, was going well until at 29 and 1⁄2 weeks when I went into preterm labor, was hospitalized and placed on bed rest – or as I preferred to call it “house arrest”! The pregnancy seemed normal for twins. I was told that everything was going great. But I always had a feeling that things were not as they seemed.
On April 1, the day before I was to go to the hospital to be induced, I called my friend crying. “One of the twins has Down syndrome”, I said. “You just have those worries that every mom has. Everything is going to be fine.” “You have had four ultrasounds that have all been normal. You are just scared.” “I guess you are right. The boys are going to be fine.” I hung up and cried for hours. I tried to convince myself that the boys were fine but my mother’s intuition told me otherwise.
It was April 2nd, 2004, and our whole family was there anxiously awaiting the arrival of A and B. I remember the excitement and commotion in the room preparing for the twins. The time was here. We were finally going to meet the little guys that we had become so attached to.
The plan was that Baby A would be delivered. And, Baby B, being the baby on the top, would just follow Baby A out into the world. Sometimes things just do not go as planned.
Baby A was delivered and was perfect in every way. Baby B was very comfortable, very stubborn and very determined not to follow the plan. It took seven minutes to deliver baby B as a breech, feet first delivery.
I could see my doctor’s eyes from under the mask. There was a different look. There was silence in the room as the nurse performed her assessment. “Hypotonia,” she said. He shook his head. I did not remember that from nursing school. “I see the simian crease”, she said. I remembered those words and their meaning. And then it was like there was an echo in the room, as if I was an outsider looking in. Then it came – that shocking news that I was never supposed to get. “I am 99% sure that Ryan has Down syndrome.”
As I laid on the table waiting to hold him, I kept hearing those words in my head. Then I saw him. I was 100% sure he had Down syndrome. I had never seen a baby with such strong facial features of Down syndrome. I was worried. How were we going to tell everyone? What would the girls think? What would the world think? What did I do wrong? What did we do to deserve this baby?
I realized in a very short time that it did not matter what the world thought. He was a healthy, beautiful baby boy and we got exactly what we wanted only times two. I learned that friends and family saw what we saw, and that was Ryan as a beautiful baby and not his Down syndrome.
His three year old sister could have cared less that he had Down syndrome. She made it her life mission to tell the world that she had twin brothers and that one had Down syndrome and it would never go away.
His teenage sister was harder to read. She never talked about the Down syndrome much but comforted me whenever I was sad and feeling guilty. She reminded me every day that behind those beautiful, ocean blue eyes was a baby that needed me more than ever. A baby that needed to be loved, Down syndrome or not!
To answer my own questions:
How do we tell everyone that Ryan has Down syndrome? Proudly.
What did I do wrong? Nothing except think that having a child with Down syndrome was the end of the world. It is actually the beginning of a beautiful new journey of life.
What did we do to deserve this baby? This one I cannot answer. I do not know what Jeff and I did to ever deserve someone as special as Ryan.
It has been two wonderful years since the birth of our Baby A and Baby B. Our journey has led us to the neonatal intensive care with Kyle, and open heart surgery, bilateral tear duct probing and an adenoidectomy with Ryan. I do not know where our journey will take us in the future but I do know that it is going to be a journey filled with love, acceptance, laughter and will continue to strengthen our family bond.
As we wait to see what our future journey will bring our family, Jeff and I know one thing for sure. Unplanned journeys sometimes bring the most beautiful things to life!