Meeting Cooper: Part 5

It was only our second day in the hospital, but with all we had gone through in the last 24 hours it felt like it had been at least a week. My husband woke and pulled out his phone to do a morning social media scroll. The very first image to appear was a boy in the woods wearing hunter orange with his rifle at his side, kneeling next to a big buck he had shot. The boy had Down syndrome. Hunting is a large part of the person James is, and the thought of his son not being able to hunt with him left him devastated. This picture gave him hope. James quickly came over to show me. He had tears in his eyes. Sign #1 that this is the journey we were meant to embark on.

Shortly after that, we learned through conversation that our pediatrician had a brother with Down syndrome. This was news to us, and we felt it could not be coincidence that this was the same pediatrician that we’d taken our daughter to for years and had no idea of his having a brother with Down syndrome. Sign #2.

We remembered that our neighbor, Shawn, recently got transferred to a school called the Summit Center for people with disabilities. We are very close with these neighbors, the same people we took Andi to the morning of Cooper’s birthday. They have treated Andi like their own ever since we moved next door to them. James had been on a hunting trip with Shawn a few weeks before Cooper was born, and they talked a lot about the school and the incredible people that Shawn got to work with, some of which have Down syndrome. James told me later that the thought of our son having Down syndrome had crossed his mind while talking with Shawn on that trip. Sign #3.

Signs like these kept stacking up, and yet, we still hoped the blood test would come back negative. We asked the nurses constantly if the results were back. After some time, we got the courage to tell some family and close friends that Cooper might have Down syndrome. Any time the words left our mouths, we cried. I’m sure walking into our hospital room felt like walking into a funeral home. No wonder the nurses seemed on edge and in a hurry to leave when they came to do their work.

I decided to tell my sister, Layna, to bring Andi since we would be staying another night. I briefly told Layna the situation through gritted teeth and labored breathing. When Andi arrived, we did our best to make it a happy moment. We didn’t tell her at this point what was going on, but she’s a pretty intuitive little soul, and when she came into the room I believe she sensed the heaviness. She was visibly uncomfortable and not acting like herself. We had to bribe her just to have a picture taken with all of us. I found myself crying more because she had little interest in holding her brother or having much to do with him at all. It wasn’t the magical moment I thought it would be, and the heavy weight fell back onto my chest as I wondered how Cooper’s diagnosis would affect her and her life. I grabbed my pillow case and tried to hide the heavy sobs from my daughter. Her stay was brief. She couldn’t wait to get back to her aunt’s house and play barbies, and I was so glad she had a happy place to return to.

The day wore on as we waited to hear if Cooper’s heart was strong enough to be able to go home. Finally the news came, and the results were good. Cooper’s heart looked very typical of a newborn baby. They would recheck it in a few weeks but for now we could go home. We were told to treat him as a “typical” baby until we got the results of the blood test back.

Packing up our things to go home was harder than I expected. I didn’t want to leave. This room held so many feelings and saw all of our grief and tears. It was safe from the outside world where we would have to face the reality of what had transpired there, and the possibility of an unknown and unfamiliar future.

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As hard as that first night was, the next week would prove to be even more brutal. The ups and downs of still wondering, still hoping that our son would be “normal” seemed never ending. We compared pictures of Andi’s first moments with Cooper’s. They looked so alike. There’s no way he has an extra chromosome.

But, there was that nagging feeling I had that he was different, those signs we had encountered, and his unmistakable toe gap which I had started to call the “Grand Canyon.” We were told to report to the pediatrician that very next day for a newborn follow up and to have his bilirubin levels checked because they had been elevated when we left the hospital. I felt uncomfortable being at the doctor’s office with two kids now instead of just one, and I found myself looking around at all the typical children and comparing their traits with Cooper’s. I looked for crooked pinky fingers everywhere. I looked for Down syndrome everywhere. For the next several months, if I had to get Cooper out if his carseat, I would wonder if people would notice him and think he looked different.

A nurse called us back and took us to an exam room. I was still beside myself at the possibility of our son having Down syndrome, so that anytime someone asked me how I was doing I couldn’t talk without choking up. Today we were seeing Dr. N. He had a quiet, soft temperament. He came in and asked how we were doing, and I immediately started to cry.

“Can you check for results?” I was trying really hard not to cry. I’m not at all a crier. This episode was very unlike me. “I just really need to know if he has it or not.”

Dr. N looked at me with gentleness and did his best to reassure me. I don’t even remember what he said. I’m not sure how many crying mothers he has experienced, but I certainly never thought I’d be one of them. He did check for results and when they weren’t there, he told us it could be another week. Because it was Thanksgiving that week, the results would take longer than usual. Of course, I thought. They took his blood to check the bilirubin levels and we headed home where we would continue to wonder for four more long days.

The next four days were filled with so much love, more love than I have ever experienced. Each day someone new brought dinner. Unexpected people that we really weren’t all that close to. I look back and believe that God was whispering in people’s ears that we needed a little extra love and I’m so grateful that people listened and took action. We were fed by our friends for that entire first month. People also brought activities for Andi to do. But mostly, people listened. And they loved Cooper! We didn’t tell a whole lot of people in the beginning, but the ones that we did talk to felt like angels. They heard our story and gave us so much love. Each time we told it, it became a little less daunting. We slowly started to feel less afraid. If he did have Down syndrome, we could handle it.

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After a very long weekend, we waited by the phone all morning that Monday. It had been a week and we knew they had to have results by now. They hadn’t called by 10am, so we decided to call them. I asked James to talk because I didn’t think I could even make words come out of my mouth without crying. We were standing in the kitchen. The phone was on speaker but James took it off when Andi came into the room. I stood there trying to smile at her like this was a totally normal phone call we were huddled around the phone for.

I can never forget what happened next. James waited on the line for the nurse to check results. When she came on, I watched him say, “Uh huh” and “OK” several times. Then, “Thank you,” and he hung up. The call was only a minute or two. I held my breath waiting for James to tell me. He was looking down, didn’t want to look up at me, and I knew.

“He does have it,” he squeaked out. He looked up at me and the tears flowed. He kneeled down and leaned against the stair railing as heavy sobs came out of him. I stood frozen at the counter, wanting to comfort him but not knowing how. We both cried and cried and cried. Andi stood there watching, clearly confused and concerned. She came over and pulled a rag out of the drawer near me. She handed it to James and he thanked her and hugged her. It was a moment of pure sorrow for us as parents that we had never experienced and had been hoping to avoid.

We walked into Cooper’s room where he was sleeping and stared at him. We didn’t know why this had happened or why we were the ones to get the 1 in 700 odds, but everything we had experienced in the last week now made sense. All the unmistakable signs. All the scary possibilities were now entirely possible, and so we cried even harder wondering how much hard this child would have to go through.

Andi, being the gentle little soul she is, came into the room holding a note she had written. It said, “Mom and Dad, I’m so so sorry. I love you.” This only made us cry harder. I felt terrible for the way this news was being received, but I couldn’t change the fact that I was scared and unsure, and the tears were simply a reflection of that fear. I was never scared of my child; I was scared of the condition he had been diagnosed with and what it meant for his future because I had absolutely no knowledge or idea what life with Down syndrome looked like.

After the first gigantic wave of our tears subsided, I asked James what exactly the nurse had said. I was wondering what do we do now? Is there something special we need to know or do? Some kind of Down syndrome training? It felt like I was free falling from an airplane, and I had actually jumped out of an airplane before when I went skydiving in college. That free fall was exhilarating because I had an instructor with me and a parachute attached to my back. I had good odds of landing safely. This free fall was terrifying. I had no one guiding me and no parachute to catch me, and I was looking around desperately for something to grab on to. James tried to recall his conversation with the nurse but couldn’t. I called the doctor’s office back and asked for the same nurse.

“Hello, you just talked to my husband about our son Cooper.” My voice was shaky and nasally from all of the crying.

“I’m just…, we don’t…, I don’t know. You just told us our son has Down syndrome. I just… What do we do now?” I was crying now.

“Ya, so I can have the doctor give you a call when he’s done with his patients for the day.” She had a gentle voice. I think she was trying to help in the best way she knew how.

“Okay, ya that would be great. Thank you.”

This was one of the moments that I wish was different. I know the staff was trying their best. I know we weren’t the only ones to go through this. I know they see a lot of stuff in a day and maybe a baby diagnosed with Down syndrome that is otherwise healthy isn’t too concerning for them. But for us, our whole world had just shifted. In fact, it was more like we were taken from the world we knew and put into an entirely new and foreign one. And there was little to no support. We were told not to look up Down syndrome online, but what else were we supposed to do?

I felt like my life depended on that call from the doctor. I watched my phone all day and into the evening. Finally around 7pm the phone rang. This is another moment that I feel could have changed our feelings about the future, but instead fell short of helping much at all. Dr. L had a lot of good things to say about growing up with a brother who had Down syndrome and how his parents treated him “just like everyone else.” He also focused heavily on the school system being much more accepting of kids with Down syndrome these days. I could tell he was trying to help, and appreciated that he took the time to chat with us, but I had a two week old baby. I couldn’t care any less about what the school system would do for him. And beside that, I had been homeschooling our daughter for three years and had imagined our son would join us in that. I didn’t need to worry about his education at this time. I just needed to be told that our son and our family have a wonderful life ahead of us.

The phone call continued. It became clear to me that this doctor wasn't going to give me what I was needing. I wanted to connect with other people who had kids with Down syndrome, but I had no idea where to go for this. The exposure would be helpful for both of us and for our daughter. So, I asked Dr. L where I could find other families, thinking that he would maybe he could give us information on local organizations that could help. But instead he said, “Well, with social media these days you can find groups for just about anything so I'm sure you can find something just searching on there.”

The phone call lasted maybe 15 minutes and it did very little to reassure us or help us understand the world we had just entered. I think in some ways that was a good thing; we weren’t immediately overwhelmed with information. But we were desperately searching for answers to our questions and needed more than just hearing about how great his school years would be.

We did, in fact, turn to social media, but not for the group searches like the doctor had suggested. Some of the groups I did find were terrifying with all kinds of photos of little babies struggling for their lives. I couldn’t follow them for long. The pages that were helpful showed individuals who had been through what we were going through and shared their journey and their child publicly. We spent hours online reading their stories and looking through their photos. It was hard to picture that our son would look and sound and act differently from other kids. But these people and their online stories helped us see that it really didn’t matter. He would be Cooper and he would be loved just for that.

Over time I would come to realize just how close-minded I had lived my life, being afraid of what was different and avoiding the uncomfortable. The words were still there: Can you see beauty in things that are different?