My Life with Katie: Getting the Big News

Katie’s baptism this past Sunday was beautiful. It was the affirmation that I needed to know that everything will be OK. Maybe not fabulous. ... But certainly better. Each day over the last few weeks has had its own special challenges and emotional awakenings. I have learned that I need to keep my heart and mind open at all times—open to receive the love and support that is clearly surrounding me, but I seem to be blind to.

How easy it is to “circle the wagons” around yourself and forget there are actually other people in the world. Other people who are going through exactly what I have been experiencing as they adjust to their child’s disability. Other people who just happen to love you and just want to be there for you and your family. Other people who may actually be experiencing things in their lives that are far worse than anything I can imagine. Other people who may just need a quick and sincere conversation or a smile from someone who understands.

I received a phone call on a Friday at 3:00 in the afternoon in the middle of November. It was my perontologists office calling with the results of my amnio.  My 5-year-old twin girls were playing dress up in their room. My husband was at work. I sat on the couch and listened to the women’s voice. A women I had never met delivered to me the life changing news. Oddly enough my voice was sounding cheerful, but my insides were churning.

She asked if I wished to know the sex of the baby. I said yes, and she told me I was having another girl. That was—I hate to say—the first blow, because I could have sworn I was going to have a boy.

“I have your test results,” she said “And they are not what we hoped. Your daughter has Down Syndrome.” 

No tears came. I was silent. I could hear my girls laughing in the other room. I felt as if I had a pair of those large old-fashioned round headphones from the late '70s over my ears. I felt underwater. She went on to say that Katie had the most common form of Down Syndrome, Trisomy 21. I had done my research, so I knew what this was. Instead of the normal two of the 21st chromosomes that each of us has, Katie had three. She asked me if I had any questions or wished to make an appointment to talk to anyone in the office. Again, my voice was polite and cheerful as I declined and said goodbye to this stranger. 

I know at some point I got up off the couch. I had been sitting there long enough for my leg to fall asleep. I called my husband on his cell phone and asked him to call me. I then began to cry. Yes, I was devastated at the news. But I was also angry that I received a phone call from a stranger regarding, perhaps, the most important news of my life. The doctor's name shall remain nameless, but I think he should have phoned personally and, perhaps, asked us to come in. How thoughtless, insensitive and cruel. 

I was alone and home with my other small children. No one to talk to or share the news with. To any doctor out there who may read this, please do not subject your patients to this. I hope it is not common practice with all perontologists to not practice common decency. I deserved to have a support system around me when I processed this news. My doctor robbed me of this. As I sit here writing at my local Starbucks with every seat in the house filled, the feelings of isolation surrounding that moment are still so real.

I didn’t tell my husband over the phone. I just asked him if he could come home as soon as he could. I couldn’t bear to give him the news in the same was I had received it. I wanted to be able to hug him and reassure him that all would work out fine that we were not having a boy. Just kidding. Seriously, though, I thought he deserved better. Unfortunately, the moment never happened because unbeknownst to me he had other plans and didn’t come home until late that evening. I will spare you the details of the argument that came, but again, I felt isolated and alone.

Now, it is about not feeling isolated. It is not about excluding myself from life. It is not about thinking I am undeserving of happiness. Katie, as well as my other children, deserve a mother who is immersed in life. I am their example on the type of women they should grow up to be. If I am hesitant to take those first steps, so will they. I don't want Katie to grow up seeing herself as less than others, because she was born with a unique challenge. In order for her to know this, I have to know that I am not less, because my life has been challenged in this unique way.