After undergoing fertility treatments for our first two children, my husband and I had decided that our next child we would hope for but also chose to be content with the two beautiful children we had. Eleven months after our second daughter was born I became pregnant with our third child.
As soon as I found out I was pregnant something felt different that time around. We went in for our 20 week ultrasound hoping to find out the sex of our baby. I had enough experience through friendships to know that this ultrasound is not just about finding out the gender. Our little peanut kept crossing her legs to make it difficult to determine that she was a girl! We were excited to find this out and the ultrasound tech gave no indication of things being different.
A week later I went in to follow up with my doctor and it was then that she told me that our baby’s nuchal fold, which is the skin on the back of her neck, was thicker than most babies. This can be an indication of Down syndrome. At the time there was a blood test that could screen for your chances of having a child with Down syndrome. I had always declined these tests but my doctor threw out the term stillborn enough that I freaked out and took the blood test. I called my husband on the way home from the appointment in shock. He assured me that it doesn’t matter what this baby was like that we would love her.
Awhile later, my doctor called to let me know that my baby had a 1 in 10 chance of having Down syndrome and that she would like me to see a specialist to monitor the baby. She delivered the news very calculated and even apologized as if she had told me my baby was going to die. I remember calling a friend whose daughter had Down syndrome. We had been connected previously because her daughter with DS wore hearing aids and our second daughter does as well. She assured me that all was good and even coached me on how to best share this news with friends and family. It was a great phone call!
I honestly can’t say I was surprised that we were having a daughter with Down syndrome. I can look back on my life and point to moments where I had a gut feeling. After my second daughter was born deaf I remember a friend telling a story of a woman who had a mentally handicap son. She also had another son who was an Olympic athlete. This son’s brain was injured during an accident and he became like his brother. The mom said she was so grateful for her first son who was mentally handicap because it then helped her know how to care and love her second son who became injured later in life. That story really hit me because of the experience we had learning how to parent a child with a hearing loss. When our baby girl, Ada, was born I knew we were prepared.
Ada was born into this world quickly. I remember looking at her and knowing she had Down syndrome. Not because of her eyes or anything obvious. I just noticed she was floppier and felt different than my other two. The nurses and the doctor knew Ada may have Down syndrome but no one said anything and they treated her like any other baby. Our pediatrician was not able to come until the following day. In the mean time, Ada was not eating well. She was very sleepy and weak. When I asked the nurse caring for us if she thought the baby had Down syndrome she said it’s a strong possibility. Ada had very low muscle tone and there was a crease in her hand that can be an indication.
Friends and family came and went and no one had any suspicions. On the second day our pediatrician walked in and said “Congratulations on your baby girl!” I finally had to ask if she had Down syndrome. He said that all signs pointed to the fact that she did but that they would do a blood test to confirm.
Upon arriving home I wrote a letter to all our friends and family delivering the news with excitement and hope. This really set the tone for most people on how to interact with our family. There have been times of grief for my husband and I as we realize things that are different than we had hoped in our minds. That first year my husband grieved more than I did. After he acknowledged his sadness he was able to move on and quickly Ada became a light to him.
I, on the other hand, go through stages of grief at various times. There are things in my head I had no idea I expected until I realize that Ada does not fit that mold. This really happens when Ada is moving on developmentally. For example, I didn’t realize that I had hoped that Ada would speak sooner than most. For example, maybe my baby with Down syndrome would be a super talker! And, then when it takes longer than I had hoped I then realize I had an unspoken expectation even unspoken to me. This journey has taught me to acknowledge this, forgive myself, and keep on loving Ada and me.
Ada is almost 6 years old now. She has taught us who our community is, what is important and ultimately how to love with no bias. When Ada was born the word we chose for her is JOY! She has taught us how to live our lives more joyfully and how to love unconditionally. These are great gifts that may have taken us longer to receive without her.
Ann resides in the Mitten State with her husband of 15 years. They have three daughters who are all very special with their youngest sporting an extra chromosome. She writes a blog called Counter Culture, which focuses on her counter cultural life where she spends her most of her time, at the counter. You can follow her on Instagram @charmaluca or on Facebook