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I wrote my feelings down and had it published in our local paper a few months ago. I've posted it below.
Down Syndrome - when an unexpected diagnosis turns out to be a blessing.
“Mommy why is that girl dressed that way”. “Mommy why does her hair look like that”.
”Mommy why aren’t they paying attention to her”. These are the questions I used to ask my mother when I saw a person with Down syndrome when I was a little girl. I couldn’t understand why a mother would dress her entire family in style with nice clothes and up to date hair styles, and then leave the child with the disability in stretch pants and a bowl hair cut. I vowed that if I ever had a child with Down syndrome I would NEVER treat that child any differently than the rest of my children. Little did I know that one day I would be able to prove it.
My son, Noah, was born on May 16, 1999. We were elated to be pregnant on our own, after years of infertility and 2 attempts at in vitro to conceive our twin daughters. My pregnancy was completely wonderful and uneventful and Noah was our icing on the cake. He was my perfect little boy. I had that perfect little boy with me for 21 hours until my entire world changed. It took the doctor 2 seconds to utter the words Down syndrome. I felt lost, and sad and I cried like I had never cried before. How on earth would I cope with this news? My entire future was before me. I imagined nothing but doctor’s appointments, surgeries, medications, therapy and STARES. My husband was the strong one at the time. He never shed a tear. He fell in love with Noah the moment he saw him and nothing could change the way he felt about him. Fortunately Noah was born with only a small heart murmur that closed within 4 months. We were lucky, as most children with Down syndrome have to undergo corrective heart surgery and have many other complications. I started reading everything I could. I would tell my husband everything that I read. He still didn’t need the “therapy” that I found in books and on the website and I think his positive attitude towards the whole new life of Down syndrome really helped me. I still cried for the first 2 months, until I realized that you can’t believe everything you read in books. Nothing is written in stone and Noah was doing so many things that the books said he’d NEVER do. I was elated. When the genetic doctor called me to see how Noah was doing, I told him that I was finally happy, that I was smiling again, and that Noah was doing SO many great things and that I knew deep in my heart everything would be okay. His words to me cut like a knife. He said “well that’s all fine and great, but don’t get too excited for when he has a downfall you don’t want to fall too far to the ground. I cried for 2 more months. Was I not supposed to be happy when he achieved his goals? Would I have to keep in mind his entire life that he was going to have downfalls, therefore never be happy for his accomplishments? I realized at that moment that it was my job to be his advocate and that everything in his life would be positive. The genetic doctor was fired. I wasn’t about to treat my child any differently than my other children. In the back of my mind I still vowed that this child would be walking around in designer clothing and have a really cool hair style, and that he would really be no different than my other children. But he was different, in a good way. He was a magnet to everyone. Complete strangers would approach us just to touch his hand. When we were in public, we could tell just by looking into a strangers face that they too, knew the blessing that we shared. We would look at each other and give that familiar smile to each other and keep walking. That’s all we had to do. Noah has the face of an angel and little eyes that look like crescent moons when he smiles. He’s a hand holder and loves to cuddle and sometimes I have to get away from him for fear that I will absolutely smother him with hugs and kisses. I can’t describe the love I feel for this child and I have never found a way to show him just how much I love him. It is a deeper love than I’ve ever experienced in my life. He may be delayed when it comes to walking, talking and learning, but when it comes to unconditional love, compassion and caring, he is far more advanced than any person I have ever known. I’ve been told many times that he is less than perfect, but honestly I feel that he is so much more superior than I am, and sometimes I wonder why I was chosen to be given such a wonderful little person. Sometimes I don’t feel worthy of him. I know that there are people out there that see us in public and feel sorry for us for having a child with a special need, and honestly before I had Noah I used to do the same thing. But WE are the lucky ones. Down syndrome is the best kept secret out there and sometimes I feel sorry for those who will never get to experience having a person with Down syndrome in their lives. I find it sad that some people will never know this kind of love in their lives. I’ve been asked if I would take the Down syndrome away if I could. I honestly don’t think I would. It’s who Noah is, who he was meant to be and I can’t imagine him any other way. I just keep in my mind that this is the only life he will ever have and I cannot change it or make the Down syndrome go away, so as a family we have to be the ones to make his life the best it can be. One of my twin daughters said to me the other day “mom I am SO glad that Noah was born with Down syndrome, can you imagine how boring our lives would be if he were born normal”. Is there anything more precious that a mother could hear from her 12 year old daughter? Noah has changed our entire family for the better. His sisters Peyton and Sophie, 12 year old twins, constantly talk about him and all of their friends know a little more about Down syndrome than they used to. He has changed their lives as well. They wanted to tell one of the teachers that was expecting a baby when they were in second grade that “we hope your baby has Down syndrome like our brother”. I told them that this may not be a good idea, that their hearts were in the right place, but that she wasn’t as familiar with Down syndrome as we were and might not take that so well. Later, after she did have her baby I told her what the girls said and she thought it was the sweetest thing she had ever heard. I know that my children will grow up respecting others who have special needs and won’t be afraid of those who are different. Noah’s sister Halle is 19 months younger, but she is his best teacher and advocate. He learns so much from her and although she isn’t sure what Down syndrome is, she knows that he needs her help. She never questions this and always praises Noah. He has 2 older sisters, Sarah and Becky who have moved away and don’t see him very often, but Becky is in college studying to be a special needs teacher, all because of Noah. Whenever she is out and sees a person with Down syndrome she emails me with her excitement, something she would have never done had it not been for Noah. He has made our entire family see what’s really important in life. Noah is 6 years old now and in kindergarten at Middletown Elementary school and doing very well. We’ve educated the children in his classroom and were pleased that they really “didn’t care” about Down syndrome, that they love Noah just the way he is and like the fact that he likes Spongebob and Batman and think he has “cool hair”. . We have also met so many wonderful people on this journey that we would have never known, had it not been for Noah. He has truly changed all of our lives!
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Vonda, mommy to Peyton, Sophie, Noah(Ds) and Halle
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02-06-2006 02:59 PM
you & your family will be in our thoughts and prayers. Hugs
~~~God grant me the Serenity~~~