For me, there has always been this “feeling” or “passion” inside me to work with challenged children. I would like to share a bit of personal information with you, in hopes that you will believe that I don’t feel this way “just because I am the mother of a child with Down syndrome.” But instead, understand that this is a deep seeded passion that has been with me for as long as I can remember.
I had told myself that after the age of 35 if I had not had another child, I was done. Well, I thought I was done, I had one beautiful son (Ethan) and I was well over 35. Don’t misunderstand; I wanted another child – another boy – just ask my friends and they will tell you how badly I wanted another child. I had finally convinced myself that it wasn’t meant to be and I should move on and realize that it wasn’t going to happen. Little did I know what was in store!
At one point in time, I went through and completed the foster care program for the Lena Pope home as a single mother. For those that don’t know, this was not an easy program to go through, but I did it because I felt it was a step in the right direction. I was trying to figure out exactly what I should do.
Now this next paragraph is probably a little too personal, but I want you to have a clear understanding of how events unfolded.
At the time William was conceived, his father and I were not married, I was taking birth control pills and his father’s two daughters from a previous marriage were conceived with assistance. There is truly no “medical” reason for me to have conceived William. I was almost 40 and I told myself there was no way this could be happening. I was angry – seriously angry. All those years I wanted a baby and it never worked out. I spent years finally accepting the fact that I wouldn’t have another child and then at almost 40, look what happened. I had long talks with myself to try and come to terms with it and I kept coming back to one thing, divine intervention and God wanted William to be here. So by my fourth month, I was starting to let go of the anger and started embracing my pregnancy.
When William was born my labor was hard and fast; zero to 10 in 4 hours. This should have told me of things yet to come. When Willliam was born he wasn’t breathing. The doctors quickly stabilized him and I got to hold him for all of 10 seconds, then he was scooped up and run off for further care. It was my labor that put William into pulmonary hypertension. He entered this world at 3-weeks to-the-day early at a whopping 7 pounds, 9 ounces and 20.5 inches long. Unbeknownst to me, this would be my FIRST blessing of having a child with Down syndrome.
When the doctor came in to tell us that they needed to transport him to Cook Children’s Medical Center due to low oxygen saturation levels, he said, “We need to send William to Cook Children’s for assistance. He is requiring the need of too much oxygen for us to treat him here.” Then he said, “William has pulmonary hypertension and I think he may have Down syndrome.” I said, “OK, what’s pulmonary hypertension?” He said, “Did you hear what I said?” I said (sarcastically), “Yes, I did, is he going to know I’m his mother?” He said, “Of course” and I said, “Well Ok then; I don’t care about the DS, what about the pulmonary hypertension? That I don’t know about.”
The diagnosis didn’t faze me then, and never has. If you don’t believe me ask my friend of over 20 years, Susan Fayette. Susan had a 5-year old son named Carson at the time.
When Carson was born 2-1/2 years before William, I was not very kind to Susan when she was in the hospital. I was pretty rough on her because I didn’t think she needed to be upset about Carson’s diagnosis of Down syndrome. I thought, really what’s her problem? I told her I would love him and care for him and I meant it. Now don’t get me wrong, Susan never said she didn’t want him. She just had the same feelings and fears that most people have; but with my way of thinking, I just didn’t understand. I knew she would come around and then she would spend twice as much time beating herself up for having those feelings in the first place. As a friend, I was trying to help her, but I didn’t do a very good job. Thankfully for me, she forgave me. How lucky are we that we were friends for over 20 years at the time and we both have children with Down syndrome.
What prompted me to write this was my older son Ethan and I were having a conversation one day about William. He was asking questions, etc. He said, “Mom, if you could make William NOT have Down syndrome, would you do it?” I said without hesitation, “No, I would not change him.” He said, “But mom, things would be easier on him.” My response was this: “I don’t see how that could be possible. You see, William doesn’t know the difference. You think it would be easier because you are comparing him to a typically developing child. But to William, life is good. As he becomes older, sure he will see some differences, but that doesn’t mean it will be easier for him, you can’t predict the future and you are not him. I think what you mean is that it would be easier for you, me – anyone in his life. It would make things normal or typical for everyone else – And besides, have you seen normal lately – how scary can that be?”
You know Christmas would have been canceled one year, if it wasn’t for Rudolph and his shiny nose. And if you have a hard time with “fairy-tales” – then let’s take the leaning Tower of Pisa. I wonder if it would be the magnificent architectural phenomenon it is today if it stood straight up; if it didn’t lean, if it was normal or perfect. Would hundreds and thousands of people go each year to Pisa, Italy to see this abnormal, not perfect, needs more maintenance than most buildings that could collapse at any given time? I don’t think so. If you made it straight, you would lose a piece of architecture that for over 177 years was considered AWE inspiring, beautiful and romantic. If you made it straight, you just made it like every other old building in Italy. Italy wouldn’t have benefited from its presence – and you can just wonder what else would have been different. How many other lives would be different if this never happened; if this building just didn’t lean a little bit?
William has changed people’s lives. He has made a difference in the 5 short years that he has been here. I’ve watched him soften people’s hearts, who before knowing him would have never embraced a mentally challenged child. I’ve watched him change people’s perceptions of children with disabilities. I had a helper for one semester, picking up William from school at Kinderfrogs, taking him to child care, and then staying with him. In one short semester, Susan changed her entire college plan. She was going to go the University of Texas for journalism, but now she attends UT and has changed her major to special education with a minor in deaf education. She had learned sign language with William and wanted to pursue working with special needs children and sign language.
I’ve watched William teach his brother and sister compassion, patience, and various life lessons that most parents only dream of ever helping their children experience or learn. He has made his siblings better teenagers, and given them the forethought to be better adults. They in turn impact those around them and change other’s perceptions. I challenge you to find a day that William didn’t positively impact someone, somewhere. He changes the world, one day at a time, one person at a time. If William didn’t have DS, then he wouldn’t be William and I want my William; the good, the defiant, the hard-headed, jovial, the loving twerp that I have embraced since day one. To change him, would require undoing ALL the good he has done. To change that single chromosome would alter his identity. Who am I to decide to undo all the incredible things he has done and will do? I’ll take the hard work, I’ll take the nay-sayers, and I’ll take the medical risks. It’s all worth it to me. I was blessed to be given the opportunity to be William’s mom and my personal thought – God doesn’t make mistakes – even when we do.
So, to answer the question asked by my oldest son and by others, would I take away that one extra chromosome? Absolutely, positively not! William is perfect the way he is – He is William and I love him.
My name is Barbi Beard-Wolfe and I am incredibly proud to be William’s mom! And I love his extra chromosome!