The National Advocate for People with Down Syndrome Since 1979

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Vanessa Lee
Just Skating Around
Just Skating Around
Vanessa Lee

It was the Saturday morning after Vanessa was brought home from the NICU when I got a phone call that would change my life. The doctor called to say the results came back positive for Down syndrome. To say I had a feeling of disbelief was an understatement; how could this happen to "me"? I was not even 28 years old, still trying to get used to the fact that I was going to have to raise my child alone, because my husband went home to God when I was only two months pregnant. What did I do that was so horrible that all of my dreams seemed to be taken from me every time I opened a door to a different chapter in my life? That day and into the night, while still somewhat in a daze from the doctor's news, Vanessa's personality shined. On this night, while sitting in my living room with my Mom and Dad, Vanessa amazed us all at only three weeks of age. This little girl who looked just like my husband, the man she will never meet on Earth, rolled over on the floor. Now, mind you, the nurse at the hospital told me that I had a fighter on my hands. Not really knowing what she meant, she proceeded to tell me that my baby, who was six weeks early, kept rolling herself over after the nurse would reposition her in the incubator. As an educator in early childhood and even as a new mother I dismissed what the nurse said partly because it was all but impossible...until I saw it for myself. She rolled over on the floor the same day the doctor told me my princess had an extra chromosome! It was at that moment that my mind-set changed. I can do this! We can do this! Lying next to me was my five pound peanut, who gave me the courage to accept the doorway of what had been opened for me. I knew that I would never turn around and walk out this door. Prior to delivering Vanessa, like most mothers, I read many of the best selling books, regarding babies and what transpires during the first year of their innocent lives. Now, in a shorter amount of time then one of my six week accelerated university classes, I had to read about Down syndrome and take all the needed steps to make sure I covered every area of her potential health problems and make sure she was in overall good health. Looking back, I must say I was somewhat ignorant before I had Vanessa; all I knew about Down syndrome was that they had different faces and Corky had Down syndrome on that TV show. After all my readings and taking Vanessa to specialist after specialist, I was experiencing something that I did not expect. Besides the love that grew deeper and stronger everyday while my child grew inside me; the strength, unconditional love and courage that had been given back to me from Vanessa is indescribable. The idea of taking classes to obtain my bachelors degree while raising a differently abled child all by myself was quite scary. However, I knew I had to try despite my own learning issues, which caused me to drop out of high school ten years prior. So after Vanessa and I had a schedule in place, I chose to go back to school. It did not take long before I felt overwhelmed, scared, and regretted the fact that I thought I was strong enough to handle everything on my plate. Dropping out of school yet again was becoming a viable option. Then my child, the one who is supposed to count on me for support, opened my eyes and made me realize I just had to try even harder if graduating was something I really wanted. Vanessa was playing on the floor and was having trouble putting her "little people" into the yellow bus in which they came. At this point of development, she was able to place them in the opening in the roof, but she wanted them to be realistic and go in the door. This little girl with a ponytail on top of her head that only had about an inch of platinum blond hair gave me the courage to stick with school. It was not that she looked so darn adorable while playing but the fact that she sat for 50 minutes trying to maneuver her hands to have one open the door and keep it open and the other hand holding the person having it ready to place in the open door. Vanessa did not get the people in the bus the way she wanted that night, but I knew in my heart just as she did, that one day in the near future she would reach her goal. This little girl who was starting to look more like me each day made me see that even if you try and fail, if you kept trying you will eventually be able to open any door that you set your heart on. Over the past three and a half years, having watched my peanut grow and develop into a preschooler has been so fulfilling. However, I must admit that as her parent I wanted to make sure she had her own friends when she started school. She had friends from all of our mommy and me classes and my friends' children, but I longed for her to be able to make friends on her own. The transition from early intervention at our house to preschool was not the smoothest door we opened together but it has paid off. Besides the fact that my little girl now has long hair all the way down her back, she also truly has her own friends. This has given me the courage to reestablish a local Down syndrome support group. The reason that lead me to this is because even though I was grateful enough to have great family and friends, it would have been nice to have the option to talk to other parents who are blessed enough to be given a child with an extra chromosome. I am hopeful with this group in place, others now have that option. Talking about Vanessa is easy. This is not because she is so cute you could eat her up, or the fact that she reminds me so much of her father, and it definitely is not because she has an extra chromosome. It is because she is herself, Vanessa, the girl who will try anything that involves sports or physical activity, but also the girl who will play dress up for hours. It is the fact that she can make you laugh when you least expect it and make friends wherever she goes. It is the fact that she inspires me to be the best I can be, even if it means I have to do my own soul searching, and work three times as hard as someone else. She is the light of my life and without her I do not think I would be only eight classes away from my degree and reestablishing our Down syndrome support group. But most of all it is because Vanessa has given me a different perspective on life and reminded me that we all have a purpose.




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