Amelia Renee came into this world fast and furious on Aug 23, 2016. Her birth was so quick that she made her grand entrance in the back of my van!! When I finally got to peek at her sweet little body and those almond shaped eyes, I knew at that moment that she had Down syndrome. I had no confirmation; I could just tell. You do not spend four years as a NICU nurse and not recognize Down syndrome right away. We had prenatal testing and a couple of ultrasounds that did not point us in any direction that something may be different about this little babe. I was so happy to be having another child, her older sister only 18 months old at the time. It took a few years and some fertility to get pregnant with Amelia’s older sister, so imagine our surprise when I got pregnant without any thought when she was nine months old.
Life after Amelia was born, and her diagnosis was confirmed was the hardest time of my life. I spent many months angry, depressed, and generally ungrateful for this life I was ‘given’. I did all the right things, why did I have a child with Down syndrome? This was a question that haunted me for a months and months. The more I tried to tell myself “it could be worse”, the more fragile my emotional state became. It is a very difficult mental state to explain to another person who is not faced with an unexpected diagnosis. You have this tiny human that is here; she needs fed, changed, and loved. Yet you feel so hollow that you count down the minutes until the days are over. I spent hours each day looking at the clock waiting for anyone to come take care of her so I didn’t have to look at this baby with Down syndrome any longer. With the help of far too many self-help books and a village of friends and family, I was able to fully accept Amelia and her diagnosis.
I’m telling my story for anyone facing any unexpected diagnosis; it is ok and completely normal to have these feelings. Your feelings are valid, no matter what situation you are in. I spent far to long trying to pretend that I was fine when I was nowhere near fine. You are now in a club that you may not even knew existed before this. Things may seem insurmountable now, but there is a light at the end of that tunnel. When Amelia was born someone told me that someday I will look back at those days after her birth and I will feel sad that I ever felt that way. That is the truth, Amelia is amazing and I regret those months of just trying to make it through the day. Those dark days helped mold me into the best mother I can be. Empathy and understanding go a long way. It may be a fellow ‘club’ member that throws you a rope into acceptable. The key is this; your journey is your journey. That sounds simple and for some people it is and others it is not. Either way is not the right way.
Amelia is now a sassy, spunky, and hilarious 3 year old. The love I have for her (all 3 of my children really) runs deep into my body. I look back at those early days and I am sad that I ever had those feelings about her or her diagnosis (just like that person told me I would be). Some days are intense and difficult, but I can say that equally about all my children. Amelia is a joy and she is extremely intelligent. The sky is her limit and I fully intend on helping her reach whatever goal she wants to achieve.
So, to the new Momma that is facing something unexpected, congratulations on your baby! For a Mom that is months into a new diagnosis, keep plugging along- you will get there! To friends and family of these women, be supportive! Mostly though to everyone, love that baby no matter what the diagnosis may be. Love, kindness, and acceptance matter.