The Pregnancy

The Emotions

One down, One to go.We were now at the end of multiple appointments for blood work, there was nothing we could do but wait. So, we waited – We convinced ourselves the tests were false,  they had to be; after everything we had done to get here; how could this be happening? Four long, dreadful days went by and the phone rang with the results;  “The blood work results show there is a 99.9 percent chance your child will be born with Down Syndrome.”

After hearing the results, we were left drowning in a pool of emotions. When we got pregnant the first thing we thought was what the gender would be, what the name would be and how excited we were to meet him or her. When we got pregnant we instantly began making plans, what would we involve her in? What sports would she play, if any? Would she be smart like Nikki or stubborn like me? Would she be funny like her grandpa’s or loving like her grandma’s? We had so many expectations for what her life would be and found ourselves grieving this ideal life we had so anxiously planned.

A cycle of negativity quickly began;  “What could I have done to prevent this?”, “What did we do wrong?”, “How am I going to manage this change?” On top of dealing with these questions of, “Why me, why now?” comes shame. Not shame of the child, but shame of the emotions we were feeling.

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 more 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’ve found comfort in sleeping them away while Nikki spends the nights building things and keeping her mind completely busy.
We were shocked, we became devastated. We were angry, we became resentful. We eventually 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.

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