I have often said that I am glad that I did not know while I was pregnant that my Cedar was going to have Down Syndrome. I am glad I did not know because I know me and I would have worried incessantly and been miserable. Turns out I am not the only one that feels that way, that is the amazing thing about the internet, you can find so many other people and learn that you are not alone in how you feel. Meet Laurie, her daughter Harper has a magical extra chromosome just like Cedar and turns out, she feels the same way. All the way to her first thought, just like mine, I thought that being a special needs parent is something that happens to “other people” Here is Laurie’s story:
You never think it’s going to be you.
After three years of marriage my husband, Luke and I were excited to grow our family. We got pregnant fairly quickly and journeyed through an uneventful pregnancy with excited anticipation for our firstborn. We didn’t get any genetic testing because we wanted to keep our baby no matter what. This was pretty easy to say in the moment, but we didn’t know this statement would be put to the test.
I went into labor on my own and except for being a little early everything looked good. We headed to the hospital where I got checked in and continued to progress. What I thought was a routine check from the doctor turned into an emergency c-section minutes later. Harper was born and I got to see her for a minute before they whisked her away to the NICU. I didn’t get to hold her. I still feel the sting of missing this moment with her. After this whirlwind birth, I was left in my hospital room without my baby, in shock of what had just happened.
As I waited for the anesthesia to wear off, my nurses cared for me so well by bringing me pictures of Harper and assuring me she was in excellent hands. In the wee hours of the morning I was cleared to go see her and I was so excited. Weighing over 9lbs, Harper looked like a giant in the plastic NICU box and it was hard to see her attached to so many monitors with oxygen and a feeding tube.
Then the unknowns poured in. What was really going on? How long was she going to stay? We were so exhausted, we didn’t know what questions to ask.
Luke and I actually spent a lot of time apart during the hospital stay. He was taking back family one-by-one to see Harper and I was recovering in the room. We were both getting pieces of information from doctors and trying our best to remember and relay it back to each other.
I remember Luke telling me that the doctors asked him if we had any genetic testing done during the pregnancy and if anything had been off. He said no and they kind of beat around the bush to tell him that he thought Harper might have Down syndrome. The doctors were split in their opinions, so they went ahead and ordered the test.
Honestly, I was so exhausted that I had no energy to even really worry. I chose to not look up anything. Besides being able to spot the physical attributes of Down syndrome, I really knew nothing about it. I didn’t want anything to give me either false hope or certainty. I wanted to just wait for the results.
We were sitting in our room on the day we were to be discharged from the hospital and already knew at that point we would be leaving without Harper. There was a knock at the door and the NICU doctor, along with a nurse was with him. They shared that the results came in and Harper has Down syndrome. Tears started to flow immediately, Luke squeezed my hand.
They stated the diagnosis, asked if we had questions and if we wanted to be connected with local resources. They didn’t tell us all these scary things that we might face, which was a huge blessing when the diagnosis alone was life changing. The next few hours were spent sitting next to Luke in an oversized armchair, holding hands tightly as my doctor, other nurses and staff came to visit us to see how we were doing. They were so gracious in their responses. I know this is not everyone’s experience and I pray that when people get the diagnosis it is more like this. We were told people with Down syndrome live full lives and you just have to take it one day at a time.
The news was so heavy and I didn’t have the energy to process. I wanted to feel like a normal mom and pretend like this didn’t happen. I focused more of my energy on getting my baby home and caring for her. I felt like once we told people it was real. We knew we needed to tell our families and close friends, but I couldn’t formulate words. My husband took on these hard conversations and I’m so grateful.
After the doctors confirmed the diagnosis, she was screened for all the extra health issues that can accompany Down syndrome. Luckily, Harper was very healthy and it was a huge relief. Nine days after she was born, we got to bring her home and it felt so good.
Looking back over my experience, I’m grateful for a few things. For me, I’m glad I didn’t have a prenatal diagnosis. Since this was my first pregnancy, I got to enjoy it carefree with an innocence that I will never have again. I’m also thankful that our diagnosis was delivered with care and kindness. Our lives were undeniably changed with Harper’s diagnosis. Shock, disbelief and sadness entered in, but with each day we are experiencing more joy and hope as we get to know our little girl.
Laurie lives in Richmond, VA with her husband Luke and their daughter Harper. After an uneventful pregnancy, Harper’s arrival brought the unexpected – an emergency C-Section, a NICU stay, and a Down syndrome diagnosis. She blogs about her experiences with motherhood and Down syndrome at https://hiphipharperrae.com. Follow along on Instagram @hip.hip.harper.rae