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 at Winnie Palmer that we finally broke down. I cried on the bathroom floor for what
felt like hours, the baby we imagined 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 the nights building things and keeping
her mind 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, we were 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.