I have sat down numerous times to write this post. I have started and stopped, walked away, tried again and again, lost a draft, deleted another. I just cannot seem to find the words adequate enough to convey my inner most thoughts. I have thought that maybe this was because it was not meant to be. I am now realizing that the opposition I feel is the very reason why I need to put my thoughts out there.
I am sure by now you have read or heard at least one thing or another in regards to the segment that aired on cbs news a few days ago on how Iceland is eradicating people with Down Syndrome. As horrifying as the segment was to watch, I already had heard about this shocking news previously. A podcast I listened to months ago was talking about this very issue. It doesn’t lessen the pain and sadness I feel in regards to it, only now, it has been brought to light for millions to ponder.
I watched the segment with Bernadette cradled in my lap, feeding her the second bottle of the day. A task that is seemingly routine for babies, but for us it is quite the chore. As my screen played the video and talked about the prenatal testing that is available to women, the counseling they offer and the room where moms go to terminate the pregnancy, I couldn’t help but think back to my own story, to that very day we were told there may be a genetic disorder and were offered genetic testing to confirm. The day my world began to change.
In my own story I had declined all genetic testing from the beginning. No findings would change my mind about how we would continue with the pregnancy. This baby had a purpose for being here and I knew the Lord was knitting her in my womb perfectly in control of the entire situation.
The genetic counselor discussed our options at the first appointment with the perinatologist already knowing where I stood with prenatal screening because of a previous conversation we had. Nonetheless, she still had to go over the options at this appointment, never pressuring me to do anything but only to inform me.
I will never forget that conversation. She briefly explained the risk involved with the amniocentesis and then went into all the reasons why it would be a good idea. She had said that it would be helpful to have those findings so that during the birth if there was an emergency situation they would know if the baby was worth saving or not.
So many emotions raged inside of me as I thought about the words she was saying. It hurt inside to think that there would be even a consideration of not saving her based on her having Down Syndrome. This baby is worth fighting for and this was just the beginning of my journey in shouting her worth.
Looking back, everything I heard from doctors was all doom and gloom. Never once did anyone tell me of the joys that would come from having a baby with Down Syndrome. It was always the potential for this or that and even one perinatologist had me scared out of my mind that I was going to deliver a stillborn. There was so much negativity surrounding her prenatal diagnosis in the world of doctors and medicine. There was no other counseling offered.
My oldest daughter came in the room while I was watching the segment. Tears in my eyes, she looked endearingly at me and asked me what was wrong. I looked at her and cried. One day, I will have to explain to her why people think that Bernadette is less than as we fight to shout her worth to the world. I can’t remember what I told her, but I started to tell her that people don’t understand what Down syndrome means. With every bit of innocence pouring from her soul she looked straight into my eyes and said “I wish I had Down syndrome. They are much more fun.” I nodded my head with all the feels surging throughout me knowing that she even at her young age she could see what others cannot. She is experiencing the fullness of life that others will not.
In her immediate world, she will always know DS as an important part of our family. I know that she will have to stand up for her sister in the years to come and she will experience the misguidance and ignorance first hand.
As far as heart surgeries goes… Yes, they are scary and yes they are hard. But CHD (congenital heart disease) affects 1 out of 100 children. Those babies that are born with CHD are not all babies with DS. Of the babies that do have DS, half have some sort of heart defect. Not all of them, only half. Some require immediate intervention as was the case with Bernadette but some do not. But who is to say that because my child has DS and CHD that her life is less than a typical child born with CHD? They are ALL worth it.
So much of what has been said is out of fear. It is letting the fear of the unknown rule. There is scary in the unknown. I know that first hand. We faced the fear head on. Once we started doing life with Bernadette after heart surgeries, the fear quickly faded. The things that seemed so scary about DS weren’t as scary anymore. Light was shed and if I could let you into my heart for I moment, I can remember the day I grieved over my pregnant heart. The thoughts that went through my head of the unknown, all based out of fear and how it was going to change our family. I cried as I talked with a friend expecting a baby with DS as my heart was bursting out of chest wanting to grab her and hold her and tell her of all the ways I mourned and grieved during the pregnancy only to find out that everything I was feeling had been replaced by the most beautiful baby I have ever laid eyes on.
Friends, this is a heavy topic. But please if there is one thing I can encourage you to do is support your friends, the new mom with a DS diagnosis. Bring them gifts of love. Be empathetic to all the feels, let them process. But congratulate them. Give them hugs filled with love and grace. If you don’t have someone with DS in your life, do some research and see all the amazing things. And when that baby comes, be prepared to have your life changed. Completely. Love them as you would your own. Stand with your friend and their family and shout that baby’s worth. Stand up for them and spread awareness. There are some great opportunities in your own community. Coming up shortly are the various Buddy Walks and Step up For Down Syndrome walks happing everywhere. Find one and join in. That will mean the world to those families, to know they have your love and support but to also see you in action, spreading the awareness.
May the world see their worth. May the world welcome them with open arms into this society that has pushed them out, a society where advocates have fought hard for them to be included in school, included in the work place, included in the community. So many others have gone before us paving the way and shouting loudly. May we continue to do the same, spreading awareness and standing up for our babies, our loved ones, our friends.
My life is richer with Bernadette in it. I could not even begin to imagine life without her or her without Down syndrome. It is part of who she is, how she was CREATED. My life is better with her.
As far as Iceland goes… Iceland… you are missing out on some of the greatest people.