April 24, 2008

***Today my baby turns one. I am in awe of how much my life has changed and how much he means to me. This is an essay I wrote when Benjamin was about four months old. I am just now sharing it. Thank you to all of you who have been with us through the laughter and the tears.***

April 24, 2008.

That was the most important day of my life. In many ways, it was also the worst day of my life. But it has helped to define me. What I learned on that day has shaped who I am. It has tested my faith, and my faith has been proven.

In late 2007, I was about four months pregnant with my second child. My husband Matthew and I had a wonderful life. An adorable son Andrew who was almost two, a beautiful new house, and the life we always wanted. The life that we wanted was going according to plan. Our plan.

I had an abnormal triple screen blood test that showed a higher risk for Down syndrome, but when we went to have the level-two ultrasound, the high-risk doctor said everything looked normal, he saw no markers for DS, and even said that the baby’s heart looked great. So we opted not to have an amniocentesis. We even cancelled our follow-up appointment because it was so expensive to see the high-risk doctor. We knew we would never abort anyway, and we truly thought it would never happen to us. It wasn’t in our plan. And after we cancelled that appointment, I can truthfully say that it never crossed my mind again. That was in December.

On the morning of April 24, 2008, Benjamin Matthew Amick was born. A healthy 8 pounds, 6 ounces, 20 ½ inches long. We were so full of excitement and just couldn't believe how well everything was going. We didn't find out the gender of either of our babies until they were born, so the excitement of finding out that we had another son was tremendous. About an hour after Benjamin was born, my OB came into the recovery room. My mom and husband were talking a few feet away. I'm pretty sure I was holding Benjamin, but I can't remember. It is kind of all a blur. He approached my bed solemnly and I could just tell that something was horribly wrong. The look on his face said it all. But even then I thought that something was wrong with me. Like something had happened during the C-section and I was going to be unable to have another child; they found a suspicious lump--something. Anything other than what it was. Nothing could have prepared me for his next words. He put his left hand on my right arm, took a deep breath, and said, "I'm 99% sure that Benjamin has Down syndrome." All the clichés you hear are true. ‘It was like the wind had been knocked out of me.’ ‘I was like a deer in the headlights.’ ‘I can divide my life into two sections--before I heard those words and after I heard those words.’ My first thought was, "No. This can't be. This isn't true. This is a bad dream." I vividly remember staring at a specific spot in the upper right-hand corner of the ceiling. Like if I stared at that ceiling tile long enough and hard enough, that my doctor would tell me he was wrong. That the whole scene would play in reverse and he would back up and leave. And I could get back to my normal baby. The one I wanted. The one I planned on having. But he kept talking. I could tell it pained him to have to break this life-altering news to me. I felt bad for him. I had so many questions that I was afraid to ask. It was all so new. I remember thinking, "That's it. We're finished having children. We wanted four, but we're done now. He'll always live with us. He'll be such a burden on us. We'll love him, but he will be dependent on us his whole life." Then I felt trapped. Like I couldn't breathe. I heard my doctor. I nodded my head. But I was silent. Because the things I was thinking you don’t say aloud. You don't say what’s in your heart, deep down. That you don't really want this kind of life. That you love your son but no, thank you, I didn't sign up for this.

My mother and husband could tell that something was wrong, so they came over to the bed. My husband told me later that his first thought was also one of entrapment. I honestly still feel that way sometimes. The doctor went on and pretty much said that there's no way to know how advanced Benjamin will be until later; there's nothing they can test to see how delayed he'll be. My lactation consultant came in after that and helped me to nurse him. She said that a lot of DS babies have trouble nursing because of low muscle tone in their mouths. But Benjamin seemed to do really well, and still does to this day. It's what I prayed for the most when I was pregnant. That he would be a good breastfeeder. My first son was a horrible breastfeeder. It was months of struggle and spit-up; I’ve often said that nursing Andrew was akin to wrestling an alligator. I so desperately wanted it to go well this time. Little did I know that God answered that specific prayer because He knew I needed it.

The next day was the hardest I think. It started to sink in more. By this time, we knew about his heart defects and knew that he'd need surgery. We were able to do a little research on the Internet and were just still in shock. There were a lot of visitors. I was exhausted and confused. In front of everyone, I tried to keep a brave face on, but with my mom and husband, I just broke down. A lot. It was hard. It still is. The things that meant the most to me were the tears of other people. I specifically recall my friends Ginny and Juliet. They came separately, but they each just cried with me. It meant so much. They say that you're not supposed to say ‘I'm sorry,’ but those words meant the most. I was sorry. I am sorry. Maybe one day when he’s older I’ll be more accepting of it. I doubt that I’ll ever be glad that my son has Down syndrome. If I could take it away from him I would. But I can't. And he has it for a reason. And I have him for a reason. I have grown so much as a person through all this and can only imagine that I will continue to.

It was very hard to leave the hospital. We had been there for four days and had been in our little bubble. As we left, the reality of what our life now meant hit me. We looked back at the hospital, and my husband and I both cried. We remembered how greatly we anticipated this event. We got to the hospital at 5 a.m. for my scheduled C-section four days earlier and could not have been more excited. We had a specific outcome in mind. A boy or a girl. A Benjamin or a Katherine. But a healthy one. One without Down syndrome. But that's not what we got. It just seemed so unfair. And the pain was real. It was very heart-wrenching. I think that's the saddest I've ever been in my life. I still cry when I remember it.

People who have heard our story have said that they are impressed with the faith and grace with which we have handled things. I can only say that it must be God because I do not feel strong on my own, and I don't feel like I have things together. I feel lost and sad sometimes. But most of the time now, as I've had about four months to deal with this, I feel okay with it. I know that it is what God wanted for me, and I have a strong faith in Him, so I trust in His infinite wisdom.

It still is hard at times. And it will continue to be, I'm sure. I am more accustomed to the health things by now. Constant doctor's visits (but none out of urgency yet, just necessity) are just a part of life, as are physical therapy sessions. Benjamin will be having open-heart surgery to repair two heart defects at the beginning of October. Just the thought of that would scare most people. But I’m okay with it. God will get us through it.

I’ll be honest. Sometimes it just smacks me in the face and I have to take an evening to be sad and just cry and mourn. Mourn the life I wanted. Mourn the baby I wanted. But then I hold Benjamin and he smiles and coos at me. He needs me. And whether I always realize it or not, I need him.