I doubt you remember me from two and-a-half years ago. I sat opposite of you in your tiny corner office overlooking the bustling city. Your desk was filled with papers, everywhere. My husband gripped my hand as he took a seat next me while we waited to hear your thoughts on our unborn baby’s Down syndrome diagnosis, not that I particularly wanted to hear your thoughts.
You were cold as you pulled up my chart on your computer, your back to me. Dried up tears stained my cheeks. I tried as best as I could to hold back all of my emotions during the appointment.
You finally turned to us and acknowledged us with a short greeting before getting right into why we were meeting with you. Pity in your voice, you explained Down syndrome in a negative tone as if I had absolutely no idea about any of it. You listed all the health concerns associated with Down syndrome and the likelihood of our baby having every single one of them.
The way you referred to my unborn baby felt dehumanizing and my blood boiled. She was just another statistic, another tale of “chance”, and according to you, defined only by her diagnosis.
She already had a name. Bernadette Hope. My baby girl, whom I loved deeply already. She was being formed inside of my womb, perfectly, as I went to each and every appointment, enduring the hard news delivered, going to sleep at night worried for her future and her health.
And you played into that fear. You looked at me, once again with pity written all over your face and began to tell me how this baby would likely not survive to 40 weeks. You explained the risk of stillbirth with babies with Down syndrome without a glimmer of hope in your voice.
I tuned out the rest of the appointment. I know there were plans made and more appointments scheduled and supposedly important information about a 39 week induction, but none of that stuck with me. What I left with that day was the fear that my baby would not be born alive at the end of all of this.
Your words haunted me throughout the remainder of the pregnancy. I lost sleep over the thought of not having a baby to bring home after delivery, if we even made it that far. Tears poured out of my eyes. I filled pages in my journal with worry about how the situation would unfold.
I am here today to tell you this. She did make it. She came out fighting. Completely blue and screaming for her life, but she did it. She survived the pregnancy. And not only that, but here we are two whole years later and she is thriving. She rocked heart surgeries and everything in between.
No, it is not easy, but we are doing it. One day at a time. That’s life anyway. We have plenty of days that are beautiful and delightful and completely magical. Other days I stop and wonder what in the world God was thinking when He gave this weak woman the task of raising Bernadette. Like any other human being, I grow tired of the demanding schedule filled with therapies and appointments and prioritizing my time with my other two daughters who need just as much as attention.
Would I change it? Not for anything in the world. The perspective I have gained in these short two years is something I would not have gained had I not walked the very road I have trudged down.
Dear doctor, I wish I could share with you all of the wonderful things I have learned since that day. If I were sitting across from you, I would look you in the eyes and gently share with you that my daughter is more than her diagnosis. She is an extremely important part of our family I could not imagine being without.
I would encourage you to get to know people with Down syndrome or other families with a child with Down syndrome. Spend time with them. Observe for yourself how incredibly wonderful these human beings are. How they have all been uniquely created for a purpose that only they themselves can fulfill.
You are in a unique position. Meeting with families who are facing hard circumstances with their unborn babies. Families that are perhaps grieving the expectations they had for their family. You are seeing raw and unfiltered emotions. In those moments, you have an opportunity to help change the narrative from the very beginning.
Had you would have smiled at me when I first walked in, offered a warm and friendly hello, and even asked me how I was doing with the new diagnosis, that could have changed the essence of our entire conversation.
Starting with the positives and still referring to my daughter as Bernadette and not the “Downs baby” would have made a tremendous difference.
Sure, I understand part of being in the medical profession is giving people the facts, but insisting that my daughter did not have much of a chance making it to birth robbed me of time in the pregnancy I will never get back. The days spent mourning what I thought was going to result in loss were days that marked the entire pregnancy, days filled with emotions that dominated those remaining weeks.
Not everyone’s story ends the same as mine. I’m not that naive anymore. The reality is, there is no way to predict what will happen even with a healthy and typically developing pregnancy. I can’t see the future, neither can you. I rest assured in the One who does. The One who knows the number of hairs on my head, every single breath I will take, and my very last day here on earth. I trust Him with my life and the lives of my babies.
Bernadette Hope is one of my three greatest blessings in life. She is a world changer.
With all sincerity,
The mama of Bernadette