I remember that first night in the hospital after we knew something could be wrong. No Dr’s came in to talk to me. No one explained what would happen to my baby. But that night I lay in my hospital bed and held my sweet boy. I remember looking at him and thinking about what I knew about down syndrome.
I had never known anyone with down’s. I didn’t watch Life Goes On and I don’t even remember seeing anyone with down’s. I thought people with down syndrome lived in their own world. I thought they were unaware of anything outside of themselves. I thought all kids with down syndrome died by the time they were 12. That’s what I remembered from high school A&P, that’s what the teacher said. It was wrong but I didn’t know that and it stuck with me. My baby was going to die.
As I lay there, holding him and thinking all those thoughts. I wondered if his life would be horrible. I wondered if I should love him enough to just end it now. If I should put a pillow over his face, and save him. That thought is my biggest shame. It’s hard to get past. I can say that it didn’t last long and I quickly decided that was a horrible idea. But I still thought it. It’s something that all these years later still breaks my heart and I feel guilty and shameful for thinking it. But even through all of that I knew one thing. I loved him. And when I looked at my Avery I could not reconcile all the things I thought I knew about down syndrome to the baby I held.
He looked at me. He knew me. He was comforted by my voice and my touch. He nursed from me. He made my heart beat. I was terrified but I looked and him and saw how perfect he was.
The next day we came home from the hospital. Still no one had told us anything. We had an appointment the next day with the pediatrician, he had jaundice so we had to go by the hospital first for blood work. Not much was said at the appointment, just that he seemed fine.
The fist week passed and we decided to take him to another Dr. We made the appointment and only said we were looking for a Dr. and our baby was a week old. He came in and looked at him. He looked at the back of his neck and the palms of his hands. Then he said he had to get another Dr. I knew, I knew he thought it too. So when he came back I let him off the hook. I told him they thought our baby might have down syndrome. He was relieved, he said yes our baby was probably a mongoloid.
Yep, he said that word! We were still numb. He did tell us that Avery would be ok. That he would do all the things other kids did. This was really the first thing we’d heard. So we left and cried all the way home.
We had been told it would take two weeks to get the chromosome test back. On Tuesday of the second week of the wait I got a phone call. We were nine days into the fourteen day wait. I answered the phone in my bedroom. The voice on the other end said there was a problem with the blood. That the blood got to California and all the labels fell off. That they couldn’t use it. I didn’t understand what I was hearing. WHAT? I kept saying, “you can’t make it fourteen days again. We only had five left. I couldn’t do fourteen, I could only make it another five.” She had no clue what I was talking about, did I want to come in and have the test or not?
We were hanging on by a thread. We weren’t eating or sleeping. The cradle was on Mike’s side of the bed and all night long he would sit up and shine a flashlight into Avery’s face. “Is he breathing?” I was ask. Mike would check, say yes. The light would turn off and we would sleep for a few more hours. Every night I went to bed I thought my baby would die. I kept saying to the Dr., “weren’t all kids with down’s sick?” So she offered an apnea monitor and made an appointment with a cardiologist. What I wanted was for her to tell me he was ok, that he wasn’t going to die.
We were still seeing the first Dr. every day. On Wednesday after the second blood draw she asked if we had the results yet. She didn’t know about the labels. She called the lab and found out we could have the chromosome count in 24 hours! We could have known in 24 hours if our baby had down syndrome. So she told me to call the next day and as soon as the results were in we could come to the office and get them.
We had spent that first two weeks going from crying to telling each other it wasn’t true. Mike and his dad had gone to the library and came home will all kinds of books about down syndrome. We sat on the floor and compared all the pictures to Avery and to ourselves. What we determined was that Mike had downs.
I would ask him mom to come and sit with Avery so I could take a shower. I would stand in the shower and cry my heart out. I didn’t want to cry in front of him. I didn’t want him to think or feel that we thought there was something wrong with him. I didn’t want him to feel that I was sad about him. I didn’t want this horror to touch him. I bargained with God. I promised how I would help people with down syndrome and be an advocate for them if only my child didn’t have it. I started to tell people what the Dr’s thought. I would explain about the low set ears and the line on the palm of his hand that he didn’t have.
So Thursday came and I called to ask if they had the results. No, not yet. About 4 pm the Dr called and told me, there was a problem with the blood. There were getting a specialist in to look and it would be the next day before we knew.
So on Friday morning, on Avery’s two week birthday, I got a call from the office. Of course I didn’t answer it in time, and had to do *69 to call back. We went in to the office. On the drive there we went back and forth with he has it, he doesn’t have it. But come on, if the test is ok they do just tell you over the phone.
So we went into the office and waited for the Dr. She came in and said, “I’m sorry the test was positive.” Of course I started to cry, holding my sweet boy. My heart breaking into a thousand pieces. All the hope I’d held out was gone. Mike looked over at me. I don’t think he was crying, oh he’d cried plenty over the past two weeks. He looked at me and said, “is this the baby you have loved from the minute he was born?” Of course he was, I’d loved him from the moment he was created. “Then stop crying,” he said. Avery hadn’t changed just because of a blood test, he was still the same. He still knew my voice, looked at me, was comforted by me, made my heart beat.
So we walked out of the office that day different people. Mike told me he didn’t want anyone to tell us they were sorry. He wasn’t sorry our son was born.
I won’t pretend that it was easy after that. That all of a sudden we were these happy people who were so blessed and happy their child had a disability. But what we decided and what we have lived is our son is just as he is supposed to be. We treat him like our son, like a person, the person he would be no matter how many chromosomes he has. And today all these years later he still makes my heart beat.