The other day a family member mentioned that someone that they knew had just had a baby, who they just found out had Down Syndrome. My first reaction was,”YAY! How exciting!”. A few minutes later I couldn’t help but laugh at how different my reaction had been two years before when I found out that my own unborn child had an extra chromosome.
Before two years ago my only interaction with anyone who had Down Syndrome, or any other disability for that matter, had been from afar. To be honest, those interactions would always end with me feeling so thankful for my own health or my children’s health. So when I received the phone call from my OB-GYN in my breakroom at work and heard the words “Down Syndrome”, it felt like the world has just stopped. I got into my car and just screamed while I drove around, not knowing where to go. I didn’t want to go home and have my two-year-old twins see me so upset, but I also didn’t want to talk to anyone. I will never forget the feelings that I felt that day – they were too intense, too raw. The 16 weeks of pregnancy that followed that day were filled with a lot of anxiety and apprehension, as well as an intense love for the baby that I was scared to death to meet. I prayed every day that I would love the baby growing inside as much as I loved my other two “normal” children, that I wouldn’t resent her, or feel any differently about her.
I’m so happy to tell you that when my sweet Charlotte was born, I immediately saw her features consistent with Down Syndrome (her almond-shaped eyes, small round face, little button nose) and knew that there was no chance that the results had been wrong …and felt nothing but intense love and joy. From that moment on, I have never wished that my daughter was different and in fact, I have felt incredibly blessed to be her mother. Finding out that your child has any diagnosis is hard and there is a grieving process. You may not have lost a child, but you have lost the child and life that you thought you were going to have. BUT let me assure you that while the life that I have now is different than the one I imagined, it is far better and richer than the one I had before I had Charlotte.
I am not an expert on becoming a parent of a child with special needs. I’m still figuring this life out myself, but I can tell you what helped me during the darkest, scariest hours of my life.
During my pregnancy and Charlotte’s NICU days, I spent so much time in prayer. I felt that no one else could possibly understand how I was feeling and I often didn’t want to divulge my feelings to anyone. Praying and just spending that time reflecting really assured me that I was meant to be Charlotte’s mom just like I was meant to be Noah and Liam’s mom and it became my safe haven during the chaos.
Reaching out to other parents
The day that I received the news the genetic specialist asked if I wanted someone from the local Down Syndrome Association to reach out to me. Saying yes was the BEST decision I could have made at that moment. I was plugged in within a matter of days and meeting other parents and other people with Down Syndrome really showed me that life would still be normal, better than normal even. I know it can be scary, but you have GOT to have a tribe of people that understand what you are feeling.
Accept your feelings
It is natural and normal to feel shock, fear, and even dread. You have just found out some seriously life-altering information. I remember trying to put on a brave face and act like I was okay when I wasn’t. Don’t do that. Your feelings will catch up with you. However, don’t let yourself stay in that dark place- you have a lot to celebrate, even if you don’t know it yet.
Seek help if you need it
If you have given yourself time to take in the new information and/or you just feel such despair and loneliness that you cannot see a way out of it. PLEASE SEEK HELP. I consistently went to a therapist for about a year after my daughter was born and I am so happy that I did so. There is no shame in getting help. In order to take care of your new amazing child, you have to be the best you…and if you need to take a step back and focus on yourself in order to do so, do it.
If you have just had an ultrasound and are awaiting some lab results or you have just delivered a baby that you have been told has some common features of Down Syndrome, I wish I could be there to hug you, listen to you cry, and walk around Target/read gossip magazines with you (am I the only one who uses Target as therapy??). However, I can tell you that there is so much joy here, so much love….you are now one of the lucky few and it is the absolute best club that you never thought you wanted to be in, but will come to be so very thankful for.