We had our first child, Allison, in August 1998. Through prenatal tests, the doctors thought she might have Down syndrome, so we underwent an amniocentesis to find out for sure. The results came back normal, and we were elated. I thought to myself, that God knew I could not handle that. Three years later, we had our second girl, Leah. I kept thinking I wanted three kids, but in the months after our Leah was born, I began to question that plan and decided two kids were enough for me. Afterall, I was also 39 years old and figured I should not push it. Being a pediatric nurse, I knew the statistics and knew that Down syndrome was more common in mothers my age. But when Leah was just 13 months old, I was shocked to find out that we were expected our third child.
I had had amnios with the other two pregnancies, so it was just standard order of procedure to do it with the third child. I did not think a thing about the ultrasound results when the dotor stated that one of Rachel's kidneys was slightly dialated. He said it could indicate Down syndrome, but Allison had had three or four markers for Down syndrome on ultrasounds and was fine, and Rachel only had one marker. No worries.....right? With the other amnios, the results came back in exactly two weeks, just like they said they would, but in less than two weeks, I recieved the call from the geneticist.
It was 6:00pm. I knew then, that it was not going to be good. The geneticist told me that we had some "unexpected results." I honestly thought that she was going to tell me that we had a boy. The usltrasound had shown a girl, so that was the only surprise I could imagine! Then she said, "We have an extra chromosome." I thought about the trisomies that we had tested for.....trisomy 13, trisomy 18, and trisomy 21. I knew 13 and 18 are fatal and that 21 is Down syndrome. My first thought was, "I don't know which one I would rather her have!" The geneticist told me it was indeed Down syndrome and asked me if I had any questions. I told her that the questions I had she could not answer. I knew a lot of the medical issues associated with Down syndrome, so my biggest question was what will she be like? What will she be capable of doing? What medical issues will we have to deal with? What will this do to my to older kids, especially if we have to spend a lot of time in the hospital?
The news was devestating. I went through the rest of the pregnancy in a daze. The grief that I had at first, lessened with each passing day, but the anxiety of what lay ahead grew. As the day of Rachel's birth approached, I became more and more concerned about what the future would hold, and I was not looking forward to it. On October 10, 2003. Rachel entered this world. I figured my "normal" life was over. I was certain that I would never love Rachel like I loved my two older girls, and I felt that I would look at Rachel and morn the loss of a "perfect" child.
Little did I know what was in store for me. Holding that little bundle in my arms, I quickly realized that I had not lost a child. I had just spent the last several months grieving the loss of this "perfect" child, only to find that, in Rachel, was my perfect child. She was beautiful! I sometimes wonder if it would have been better to get the prenatal diagnosis or to get the diagnosis at birth. Having a diagnosis and no baby, causes one to focus solely on the diagnosis. I was so surprised to realize that, once Rachel was here, the Down syndrome was not the end all be all. Rachel was still a baby, and she still brought joy to our hearts. Yes, joy. Just months prior to her birth I would have never believed it, but the Down syndrome just didn't seem to matter.
We were blessed with a really healthy little girl. She required two surgeries at birth that were pretty simple. Well, I guess that is easy for me to say, but Rachel came through like a champ. We were so fortunate that she did not require heart surgery. My fears of spending lots time in the hospital with Rachel were unfounded. That is not the case with all children with Down syndrome, but I am certain that even if Rachel had had some complications and spent extended time in the hospital, I would have still felt that she was perfect.
I was amazed at how ordinary it was having Rachel in our life. As she has gotten older, it has not been so ordinary. Rachel was in Early Intervention from birth to three. We had a PT, OT, ST and teacher coming to our house each week. The PT came twice a week, so our schedule was pretty full. At three, Rachel went into the school system. It was difficult letting her go at the tender age of three and still crawling, but the teachers were wonderful, and Rachel learned to walk shortly after starting school.
Rachel is now six years old and in kindergarten. She loves going to school and she loves her teacher and friends. She learned to walk after she turned three, she learned to use the potty when she was four, she continues to learn how to dress herself. She struggles to communicate, using single words that are often not intelligible. She wears glassess. She wears orthotics in her shoes. She struggles to use her utensils, she cannot write. She cannot do a lot of things most six year olds can do, but she is the sweetest child I have ever met, she gives ths best hugs, she amazes me everyday with something she does. She surprises me with something she remembers from weeks or months ago. She struggles to do things, but she is not disabled. She is able and with time I believe she will do most things her sisters do. Rachel has taught me that disability does not mean inability. She teaches her sisters to accept others that are different. I think we are going to be a better family for having Rachel in our lives. Yes, raising a child with Down syndrome can be difficult, but little did I know when I first started this journey that it can be a wonderful experience too. Anyone out there with a prenatal diagnosis of Down syndrome should talk to parents of children with Ds so that they can realize that this is not the tragedy the medical community would have you believe. Life with Down syndrome will be different, but it will be good!!!
