Down Syndrome And Our Family

When you are pregnant, you hope for a healthy baby. Your biggest fear is that something will be wrong with the beautiful new life that has been given to you. Usually, all is well. Sometimes, however, things don't quite happen as you hoped for.

Back in 1991, my husband and I were expecting our second baby. We knew we were going to have a boy and had named the baby Garrett. When I went into labor on October 5th, I never imagined that one of our worst fears was about to come true. Within an hour of Garrett's birth, we were told that there was a problem with his heart, and that they were transfering him to a bigger hospital. My husband went with Garrett, while I stayed behind and waited for the call. That call came at 10:05pm. My husband, through tears, told me our son had Down Syndrome and major heart defects, which would require open heart surgery within his first year.

I cannot begin to put into words how devastated I felt. I had "lost" the perfect, healthy baby I had been expecting, and now had to deal with something completely unknown to me. I was frightened, grieving, and angry. I was angry at the doctor's. I was angry at the other parents who were holding their "perfect" children. I was angry at God. I didn't understand why He had allowed this to happen to our family.

The next day, I was released from the hopital and was able to go and see my son in Neonatal Intensive Care. At the moment I saw him, I began my journey. He was beautiful. I knew a long road lay ahead, but my husband and I would get through together.

Garrett had open heart surgery when he was three months old and another surgery on his right eye when he was six months old (he also was born with paralysis of both eyelids, but only the right was severe enough to require surgery).

I would be lying to say that the journey has been an easy one, but it would also be untrue to say it has been terribly difficult. There are wonderful days and there are not so wonderful days. There are times when he cracks me up laughing and there are times when he makes me cry. I have learned a lot about myself since Garrett has been born. I have learned patience. I have learned to see the joy in simple things. I have learned that gifts come in many packages. I have learned that what I thought, at first, to be an unanswered prayer, was in fact, a precious gift from God. I have also learned that by asking God for certain things, we are trying to bend God's will for our lives. When we don't get what we want from Him, we blame Him rather than accepting it as His will for us. This is a very hard lesson to learn and some people will never learn it. My children have learned as well. They have learned acceptance and unconditional love. They have learned to look on the inside to see the true person.

I know that we have many mountains ahead of us. I also know that with the support from our family and the love of God, we can scale those mountains. And when we get to the top of one mountain, we will stand together as a family and cheer and give thanks. Then we will begin the trek towards the next mountain.....together.