When the world sees your child as a burden, as inferior, as one whose life does not have value, you realize it’s time to change the world.
When we received our daughter’s prenatal diagnosis of Down syndrome, we cried. Our minds were clouded by statistics, worry and fear. We didn’t know a damn thing about Down syndrome. What did I know? My baby would be born with delays. That was all I knew. That’s pretty limited knowledge for a teacher. My network consisted of those who had children without disabilities.
I asked my OB to book us to terminate. I couldn’t do it. I couldn’t possibly be a good mom to a child with Down syndrome. I didn’t know how to raise a child with Down syndrome and I wouldn’t know how to support a child with a disability. How could I give this child the best life? How could I possibly take this role on? This was an impossible feat.
Saturday morning, the charge nurse called to talk about a coming ultrasound appointment. I felt pain and despair. I held back tears. I felt embarrassed and my heart sank. Why would I want to end a life? The life that James and I made?
She told me to go to that ultrasound appointment. She encouraged me to get to know this unborn baby.
It was a Wednesday in April, we went to our ultrasound appointment. I didn’t know we would fall madly in love that day with our baby. We found out we were having a girl and we were told she was healthy. The doctor used the word “perfect” to describe our baby.
A weight was lifted that day. We exhaled.
We heard the word “perfect.” This word came out of a doctor’s mouth.
What if he told us it’s so unfortunate?
What if he told us she would amount to nothing?
What if he told us she would live in a group home?
What if he told us she would be a burden on society?
His words that day carried a lot of weight.
My OB cried with us. She showed empathy and compassion, but she didn’t feel sorry for us. She never once talked about termination or that our unborn baby’s life had no value. She allowed us to grieve, but she also encouraged us to get educated and speak with a genetics counselor. To not sit around and wallow in self-pity.
Her words that day carried a lot of weight. I believe that a family needs to go through a process. James and I did.
We cried some more.
We feared the unknown.
Emotion over logic.
But what if this was doable?
What if we could actually do this?
We made her.
We love her.
I think about the day we received the diagnosis and I don’t dwell on how I felt. I don’t get mad at myself for shedding tears. I don’t feel guilty for being scared. Would we have terminated?
We needed to grieve and we needed to go through all the emotions. We tried to convince ourselves that life would be too hard, but realized this is just part of our journey. This is a part of our story.
Recently, a basket was delivered to a family. Three times they were asked if they would like to put their beautiful baby up for adoption.
It’s 2019 and our children are still seen as not capable. They are seen as a diagnosis. They are seen as less worthy.
Let me tell you, doctors, nurses, genetics counselors, social workers, pediatricians — please change how you talk to families. Change how you deliver the diagnosis. Get educated. Change your words. Change your thoughts.
A baby has been born. A beautiful baby has been born. You congratulate the family on the birth of their baby. You shout their worth. You provide support and comfort to a grieving family. You reassure them it will be OK.
If the family receives a prenatal diagnosis, you don’t say “I’m sorry.” You share the diagnosis in a professional and compassionate manner. You connect the family with community resources and supports. You comfort them.You do not encourage termination. You do not tell a family that their unborn baby is not worthy of life.
Your words carry a lot of weight.
Our children do not judge. Our children find happiness in what they enjoy and share that with everybody they encounter. Our children are worthy of life. They are valued. They are loved.
The journey is tough. There is no doubt. It’s a road I thought we would never travel down, but here we are. We look at our child and feel tremendous love. We feel joy when milestones are met. We feel elation when we hear new words. We celebrate. We see beauty. The world became a better place after our child was born.
When the world sees your child as a burden, as inferior, as one whose life does not have value, you realize that it’s time to change the world.
“What makes you different, is what makes you beautiful.”