I was 16 weeks pregnant and I went to see the dr for a regular appointment and he suggested we do the triple screen. This was a new dr because I had moved recently. I didn't care for him as much as my old dr, a family doc who specialized in OB. But I figured maybe those were big shoes to fill! I was 42 at the time and this was our second child together (Dave, my husband, had two from his first marriage). Dave and I started debating the test. I was saying that if I did it and something showed up that I would only do further testing to know what we were dealing with and to prepare. My husband felt otherwise and said, “Well, I think we need to be open. We have 3 other children to think about. We both have to work and we need to think about what is best for our family.” I told him that I was not even considering termination and since it was getting heated we decided not to get into a fight over it unless something did show up. It was strange because I did not have any testing with my first son, so I don't know what prompted us to consider it. Maybe deep down we both had this "feeling". Well the test came back and showed a 1 in 6 chance for Trisomy 21.
Dave and I began the debate again. I didn't want to do the amnio. I told him I was not going to abort. He said, “Well there could be so much more than the Down Syndrome”. We argued for the entire day. I agreed to go for an amnio just to confirm the diagnosis so that we could then determine next steps if the diagnosis was confirmed. I posted on a prenatal testing message board and shared my concerns. I heard from several Moms who had children with DS. All had positive stories. I heard from a couple of people who terminated and all of the reasons why. I was so mad at my husband I ended up going for the amnio with my girl friend. I came home and he brought me a bouquet of flowers. It was an ice breaker, but I didn't want to talk about it until we had a confirmation.
One week later I was at work and the phone rang. The Doc confirmed that we had a little boy who would have DS. I numbly wrote down the info about the genetic counselor and hung up the phone. It rang again and I picked it up without thinking! It was my boss who I have a friendship with. He could tell something was wrong. I burst into tears and told him about the call. He very calmly told me to go home and be with my husband. He told me as much as it hurt right now he had faith in me and he thought I could be a good Mom to this baby! Instead of leaving I called my friend into my office, closed the door and told her the news. She hugged me and told me it would all be okay and that what ever I wanted to do that she would support me and be there for me every step of the way.
I went home and told Dave. He told me he wanted me to consider termination. He didn't think he could handle having a child with a disability. He talked about medical needs and their costs. He talked about impacting the time we would have spent with our other children. He talked about the fact that both of us were over 40 and who would take care of this child later in his life. I told him I already knew of several people with DS that were living independent lives and that I had heard only positive stories from Moms of children with DS. He asked me what would make me consider termination. I answered an extreme hardship on the child not myself! I was once very much pro-choice. I even had an abortion when I was younger but at this moment I felt I had an epiphany. There was life in me. A life that I had wanted. I called the life a baby. How could it not be now just because it wasn't perfect? I thought so hard about this I thought my head would burst. I could rationalize it or try to provide a hundred different reasons why termination made sense but I had to be honest and come to terms with the fact that if I did this I would be choosing to end life.
I had the e-mail address of one of the Mom's who answered my post on a message board. She wrote me a beautiful letter about what I controlled and what I didn't, about the hope she had for her child, the intense love and the blessing their daughter turned out to be.
Dave and I went to have a level 3 US. The baby's heart looked good. He looked pretty healthy so far. The dr who came to talk to me about what they saw told me that sometimes they can't see things right away but she said some very positive things about the future and about the children in her practice that had DS. My husband was in denial and kept asking if they were sure about the markers they saw and what were the chances that the amnio was wrong!
We drove home in silence. Me with tears streaming down my face, he with a distraught look, just staring straight ahead! I silently wished I would miscarry so I wouldn't have to consider the whole idea of termination. Then it would have been God's decision not mine! I began reading the book the genetic counselor gave us. The book had stories of people who made each decision. We drove to the OB’s office and consulted with him. He was really pushing for termination, telling me he could set it up for the next Monday. He told us that would be the decision he would make if it were his child. I remember thinking, "Who asked you what you would do?", but I sat there and said nothing!
We got home and I asked Dave to read the book. As he read the stories tears began slipping down his face. I then showed him the part about selecting a termination method. We spoke to family members and friends. Most of them either looked at us in pity and said nothing or supported going for termination. My sister told me that I had to really think about the outcome of either decision or stick with the one I felt was the better of the two. She was not encouraging me to do either. The dr called again to see if I was ready to make the appointment for termination. He told me many of his patients make the decision and then have "normal” babies afterwards! I told him I was still not thinking about terminating and that Dave and I were still discussing the issue and hung up.
The genetic counselor had a couples’ counselor call us to see if we wanted to come and see her to deal with the decision and the aftermath of it. I remember her making comments about all the things that can go along with DS when all of sudden I felt Connor kicking me. It was as if he was saying "I'm here, I'm real" ! Right then I made my decision. I told her I didn't know if we would need that but I would call her back if we did. I walked downstairs and I told Dave that I had made a decision. I told him I knew there was a chance that our marriage may not survive this and, while I did not want this to happen, I knew if I terminated I would never be able to forgive myself. I told him I hoped he understood that and nodded. He told me he would do his best.
I went to the dr for my regular appointment and he seemed shocked at my decision. He asked me "what my husband had to say about this?" I walked out of there that day and thought I will never go back to that dr again. I told Dave I was going to look for a new dr and surprisingly he agreed and said he had an uneasy feeling with him too. I found a midwife and from our first meeting I knew she would be wonderful!
Meanwhile one of the ladies I met invited me to her
DS support group. I will never forget her kindness! I began meeting some of the regulars. They were so inspiring. There were woman who's children had heart defects and had gone through surgery to correct them. They were so upbeat and the kids were doing awesome! What struck me was how "normal" their lives seemed. Actually, it seemed that this surprise diagnosis had a positive affect on their families. There were some who knew before the birth and some who knew after the birth. I found all of these women to be fascinating as I heard how each of them found their own way to acceptance. But, by God, all of them got there! I always felt happy when I visited the support board
website. And I felt hopeful. Dave however continued to sulk. He did things that were extremely self-centered. He asked about adoption. We had friends that were fighting amongst themselves as each of them took a stance in supporting my decision or supporting what Dave wanted to do!
Over the next few months Dave was mostly withdrawn and made excuses to be away from home. Coaching both kids’ soccer teams and also he played baseball and soccer himself. I had some pre-term labor. I had pre-term labor with Colin too. But with Colin, Dave stayed at my side. This time he dropped me off and made some excuse about needing to pick up his daughter and getting her to her soccer game. At the hospital they gave me a shot to stop my contractions. I was discharged two hours later but Dave never came back. One of the nurses came to talk to me. She was very thoughtful and kind. I just got up and left. I called a cab and went to Dave's Mom's house. She had my other little boy with her. She about ripped Dave’s head off when he finally showed up at her house.
We drove home in silence. I put my son to bed and began talking about separating and I asked Dave if he wanted anything to do with this child? Dave told me I was over-reacting but I told him I was not and that he needed to stop thinking about his own feelings and start thinking about the rest of his family!
My step daughter kept telling me that her Dad would come around and to be patient. My step son was trying to figure out if he should allow himself to care. He asked me one night if the baby was going to live long after he was born.
I kept going to support boards and each day I would get enough emotional support to get me through another day! I remember thinking God does not always give us what we want but we somehow always get what we need. I wanted Dave to support my emotional well-being, what I got was support from other Moms! For that I will always be grateful.
We continued going for level 3 US. His heart looked good! I was relieved! On August 16, 2001 my water broke. Dave and I went to the hospital and began waiting for our little guy to enter the world. 24 hours later they decided to give me pitocin to get my labor going. It came on so fast it sent Connor into distress. We opted for an emergency C-section. When I woke up I looked at the nurse and asked her if my baby was alright. She smiled and waved to someone to come in. I looked up and in came Dave with the biggest smile on his face and blurted out, "Honey, this baby is awesome! Can you ever forgive me for being such a jerk?" I began weeping but this time out of joy as I looked at my beautiful son's face for the first time! He was awesome!
There was no turning back with Dave. That child had his Dad solidly wrapped around his tiny little fingers. At 6 weeks we were devastated to learn Connor had a digestive disorder. He would need a temporary colostomy that could be reversed 6 months later. Dave came up to the hospital the day of the surgery and he had obviously been crying. We hugged and I told him it would all be okay, that I had spoken to the surgeon and he gave me great statistics on the success of this surgery! He was the best surgeon in the hospital one nurse had told me! Dave said, “You don't understand I really like him.” I tried to correct Dave and told him "you mean you love him!" And Dave said, "Oh no, I love all my children . . . but I really like that kid!” We laughed and somehow we knew everything would be fine!
A couple of months after his second successful surgery we went to a wedding. One of our friends who was very pro-termination when we first got the diagnosis stood up at the table with all of our closest friends standing around us and said, "I want to propose a toast to our friends, Dave and Kathy who faced a tough situation, came through it stronger than before and changed all of us! Through your experience you have forever changed the way many of us think! We learned about acceptance and true unconditional love! We admire you and we love you!" We just looked at each other and held up our glass of champagne and said "to Connor".
As I write this today Connor is 2 1/2 years old! He is a complete joy! He's got his oldest brother and Dad wrapped completely! Not that his Mom, big sis and middle bro don't adore him too it's just those two seem to be under the Conman spell! Even when he's being a little stinker, he can get Dad and big bro to do anything his little heart desires! He flashes that dynamic smile and it's all over! We look back at that time and it seems so long ago! As my MIL always says, "he's made us better people". We thought we knew what love was before . . . we really had no idea! It's funny because even the children in the neighborhood and at daycare are just smitten with my little man! I wake up everyday and I thank God for him . . . and the good friends I've made in my support groups! In retrospect, we felt as though we started this journey with such a dire outlook on the future only to find that we were enlightened by the joy, acceptance and love we experienced through the journey! Thus the title of our story!