There are many ways that this letter could have been written. I could have pointed fingers throughout, I could have used anger as my motivation and have it reflected in the words you are now reading, or I could have calmly and peacefully written about my disappointment in the community without pointing any fingers. I chose the latter, but you should all know that I strongly considered using anger. I think disappointment is a better reflection of my feelings.
I am disguising the name of the town being discussed so that opinions are not swayed either way for the community I love. The community as a whole is wonderful as are the people in it. There were just enough encounters that made me feel that this letter was warranted.
To the people of Riverbank, it has been personally difficult for me over the last 2 years to keep my opinions of our community to myself. What made me decide to acknowledge my feelings now? Honestly there is not one event that swayed me but a combination of idiotic, ignorant and outright mean behavior that prompted me today to write to you about it. I am not going to derive any pleasure from this letter, only grief because of my true love for the community and the people in it.
Over the past couple of years my wife and I have given the community the benefit of the doubt when it came to my daughter Amanda, who in our eyes just happens to have Down Syndrome, but in your eyes has a terrible disease that justifies you to speak with each other and express pity and concern for us. In two little one syllable words STOP IT. I ask you to do this not to scold you but to educate you. From the start we did not keep Amanda’s DS a secret; we didn’t keep her locked up in our home out of shame, she was strolling around with us from day one. After Amanda was born we did what we had done previously with our other two children, we called you up to let you know that we have a new beautiful addition to our family, but yes with Amanda we told you immediately that she was born with down syndrome.
Honestly, the first day or two was difficult for my wife and I because Down Syndrome was foreign to us just like going to a new country (read Welcome to Holland), but having a new baby wasn’t and that soon overshadowed her Downs. The few who came to the hospital were given a true look into my feeling for our new arrival. I think it’s appropriate for the rest of the community to hear it. The following were my purest of feelings put to paper within the first week of our daughter's arrival.
“When ever I saw a child with a disability I always thanked God for blessing my family with healthy typical children. When Amanda was born and we found out that she had down syndrome I went through the classic emotions; anger, denial, and guilt. I went to sleep that night afraid of what tomorrow would bring.
I woke up early the next morning and found that I had a dilemma on my hands, so I thought. If I always thanked God for giving us healthy typical children, what should I do now? God has given us a child who has something called down syndrome, something I knew nothing about. I thought about it for a moment, then stood up in bed, looked towards the heavens and said... thank you.
See, although it has only been five days since Amanda was born, I can already feel the joy that she has brought to our lives. Yes, we have ups and downs, but over all we look forward to our lives with Amanda. I can already feel the strength she has given us. Because of her, I will be a better husband, father, son, brother and friend. I know that I am the one that is supposed to teach her how to live, but she has taught me so much already. My only regret that I have is how I initially felt when she was born. I hope she forgives me.”
The first few days of our lives with Amanda were quite devastating, but not in a way you might think. It wasn’t the down syndrome that had us scratching our heads; it was the overall response from the community. When we were in the hospital, unlike with the birth of our other two, we didn’t receive balloons, stuffed animals, cards and flowers. We received an occasional phone call which usually ended up sounding like a sympathy and condolence call. My daughter was just born and we receive condolence calls? Note to the community; I mentioned that my wife and I had given many of you the benefit of the doubt, not knowing how to react, this was completely understandable however, this wasn’t the first time a child with special needs was born in our community. Let me give you a quick word on how to react if someone in our community should give birth or adopt a child with special needs. Ready for this…….CONGRATULATIONS!.......It’s that easy. Trust me that’s all the parents want to hear.
Let me not forget to mention that a few of our friends did come and visit us at the hospital and did call us and wish us a congrats. You know who you are and just know that I love you and thank you. Your families will always be held close to our hearts.
Also, since Amanda was born we have made new friends and have become closer to others. I find it interesting that our newer friends have accepted Amanda more openly and willingly than some of the friends who we have had longer relationships with which hints to me that maybe my family has changed since Amanda’s arrival. I can truly say that our outlook of life and the things that we used to consider important has certainly been altered. Things that we used to take for granted and some of life's simplicities are more important than some of its complexities, if that makes any sense.
Typically, after a birth in our community, friends get together to provide meals for a week or two to help the family so that mom can rest. We were amazed that the community provided over a months worth of meals which at first on the surface was quite nice, but soon gave us insight into what was approaching. The gesture was nice and we certainly appreciated everyone for pitching in, we never had so many bags of salad in our fridge, but let me ask you, where were you after you dropped off the meal? A day, a week, a month later, we never heard from you again. Your kindness was overwhelming but lost its genuine feel when all became silent. The silence was soon replaced with gossip. I can’t tell you how much hearsay was floating around about us. I’m sure there was more but I could only vouch for what I heard and let me tell you, it was painful.
What hurts even more is my wife and I are expecting again and people for the most part can only role their eyes wondering what the hell we were thinking. People automatically assumed that my wife and I were done having children because of the arrival of Amanda. Why? Just the opposite. The beautiful sole of our daughter had us wanting more kids. Are we a bit concerned of the possibility of our next child being born with Down Syndrome, yes, a little, maybe, but isn’t that natural? The odds are in our favor that we’ll have a typical child, but it really isn’t as significant as it once was. My wife and I have even considered adopting another child with special needs.
For the women out there who say things like “I don’t understand how Robin does it. I could never do what she does”. Let me share a little secret with you. Yes my wife is an incredible and special individual, but you know what, if you should ever be faced with the same circumstances, you would be able to do it too. Honestly think about it, you bend over backwards for your children now, what makes you think you couldn’t do it for your child who needs more attention? If for some reason you should need help smoothing over those little bumps (and that’s really what they are, bumps) look on the positive side, you have us. We’ve been there, done that and still doing it.
My daughter is not sick nor should she be pitied. Down Syndrome is the presence of an additional chromosome in our genetic make-up, we typical beings have twenty chromosomes, she has twenty-one. Down Syndrome is apart of Amanda the same way the color of our skin is apart of us. DS does not define who Amanda is; Amanda defines what Down Syndrome is. Amanda is my loving, beautiful, funny, inspirational daughter, who has a wonderful future ahead of her. If there was ever a button to push or a switch to flick that would make Amanda typical, I WOULDN’T TOUCH IT, EVER. AMANDA IS PERFECT JUST THE WAY SHE IS.
I love my community. Please understand that this letter is to educate and hopefully help you understand that having a child with special needs doesn’t make a family as different to yours as you may think. Please remember this letter the next time a family is blessed with a special baby.
For those of you who are new to “Down Syndrome Life” I started this blog around the time Amanda was born thinking that I would have overwhelming experiences to share with you because of her DS. As you read from my early blogs to the present, the blog becomes more about life in general because as I mentioned above, our family is really no different than yours.
PS. I encourage everyone who took the time to read through this letter to leave a comment, specially my regular readers who have children with special needs.
I have been corrected by Dani, mom to Alyse of the following error in my letter:
My daughter doesn't have 21 chromosomes, she has 47 chromosomes, and triplet copy of the 21st.
Thank you for the heads up call Dani. I guess this was a Newbie mistake:)