Monday, April 3, 2017
There is no easy way to enter the process of hearing your baby will be born with Down syndrome and a heart defect – there is no word to explain the grief, shock, anger or feeling of isolation. Soon, we found ourselves booked with appointments; meeting with doctors, specialist and genetic teams to gain a better understanding and view of her heart. The overload of information was overwhelming, in those first few weeks, after hearing statistics, talking to doctors and reading about it everywhere, we thought we knew what it all meant but to be honest, we were completely and utterly devastated.
It wasn’t until the third appointment we finally broke down. I cried on the bathroom floor for what felt like hours, the baby we dreamt to life would be deprived and live a life shorter then what she deserved. The days began to pass and I found comfort in sleeping them away while Nikki spent entire night building things and keeping herself completely busy.
We were shocked, we became devastated. We were angry, we became resentful. We refused to open her bedroom door, we felt guilty. There was a process of grief as we had to let go of the image we created for our daughter and accept what would be. We began to mourn and let go of the expectations we had developed for her.
Weeks went by before we were able to sit and talk about it, then we attended the genetic counseling appointment and decided there would be no more testing, or bloodwork for any further determinations – We would wait until she was born and handle it as it comes. The only concern at this point is her heart defect.
Of course this news has left us overwhelmed. We are still adjusting and find we may still be showing signs of shock, but we have learned from other parents that we will move away from this time of uncertainty to a place of excitement and amazement. We have a lot to learn in the next few months about Down syndrome. We have already started to research and are set up to deliver in one of the best hospitals around. Some of the most important things we've learned are that each person with Down syndrome is a unique individual, and that with recent advances in medicine, education and acceptance, our daughter will live a rich and rewarding life, and will enrich ours as well. While we never expected this to happen it opened our eyes and made us begin to appreciate the health that she does have and the gift of life.
The truth is, we are keeping faith that this will be ok. We spent years waiting for this miracle and will no longer allow a diagnosis to take away the pure joy of our daughter; Mckenzie.