**** As a side note I have removed last names from his letter for my post here on the blog***
My name is Darin. I have lived in Indianapolis for almost 2 years now and have enjoyed reading your publication. I appreciated the variety of activities that were presented along with the advertising that related to our family and my 2 young children. I also very much appreciated the article that sought to educate the public about children with Down Syndrome submitted by the Indiana Down Syndrome Foundation's executive director.
By this time I am confident that you have realized what a grave mistake it was to present the issue of prenatal testing in the unfortunate manner that you did. One of the children on that cover belongs to a man I consider to be one of my best friends. I also consider Nash to be my friend. I understand that you have received quite a number of letters by this time.
I would like to help you understand why that is and what it is you can do to turn this awful mistake into something positive.
7 years ago I was truly blessed with a son and his name is CJ. When CJ was born he had some medical complications. We were living in Goshen IN at the time about 3 hours north of Indy. They told us that our newborn would have to have surgery and needed to be sent to Riley in Indianapolis. This was my first born. My wife had to stay in the hospital and I had to follow my son in an ambulance for 3 hours to arrive at a hospital I had never been to before late at night. That was a difficult time. My son was put in NICU and I spent the night on a lazy-boy in a lounge and was woke up twice to sign papers. The next morning a young physician in residence came to me and said "Mr. Y----- I need you to sign some papers before we take your son into surgery". I read over the papers and first thing that was listed as a possible side effect was DEATH. I stood there and I thought...Then I went up to the man and said "if my son doesn't have this surgery is he going to die?" He said "yes". I said "then there really isn't much of a choice now is there?". I signed the paper and walked over to my son's bed...put my forefinger down by his little hand, and he grasped on to it. I had tears running down my face. Seeing this, the resident came over to me and said "Mr. Y----...there are some babies in this room that are going to die. Yours is not one of them. If he was I would tell you."
CJ came out of surgery just fine. While spending time in NICU they told us they had done some blood work to confirm it but he had indications of Down Syndrome.
He was moved over to a regular unit after a few days.
There was a head nurse there who looked over him. She would come up to his bed and say "CJ...you're beauuuuuuutiful...you tell your mommy and daddy, you say daddy, I'm beauuuuuuuuuuuutiful!" I can't tell you how much those words meant. Another woman from Riley named Anne from the Down Syndrome clinic told us something very important. She said "he is a baby first. He is not a Down Syndrome baby...he is a baby with Down Syndrome". She went on to tell us the sky was the limit for him. He could do what other kids do.
3 years went by and we had learned a lot about DS.
The phone rang on a Tuesday morning. It was an adoption agency. They said a little girl was going to be born with DS in about a month and wanted to know if we were interested in adopting her. We said that we were. The phone rang the following Thursday and the agency said "baby came early, mom picked you. When can you get here?" We brought our new bundle of joy home from the hospital the following Tuesday. Her name is Grace.
One time I had a colleague at work say to me "awh come on...you couldn't tell me that if you could have had CJ with out DS you wouldn't have chose it." I thought and then I said "you know, Down Syndrome is part of who CJ is...if he didn't have DS he wouldn't be CJ.
So I can honestly say that I wouldn't have him any other way."
These children have opened area's in my life I didn't even know existed. They have gifts and talents to share with the world. I have gone places, met people, and done things beyond myself because of CJ. We moved to the Indianapolis area so that CJ and Gracie would be able to experience a better education and social life without the prejudice and discrimination that they were experiencing up north. What a disappointment to have a family publication that I appreciated insult my friends and family in this manner.
The group of people affected by this stretches way beyond Indianapolis...and way beyond our Down Syndrome extended family. This was a direct case of bringing pain to the disability community. I myself have Diabetes. I wonder if we live in a time that if people knew their child was going to have diabetes that they would choose to terminate the pregnancy early enough that no one would know. That would be unfortunate because I have lived a tremendous life.
In spite of having a learning disability I am currently attending graduate school to earn a masters in special education which I intend to dedicate to my son and daughter.
So where can we go from here? I think an apology is in order for the Down Syndrome community and especially those children and their families who were on the cover this month. Support for our annual fundraiser to help raise money and awareness would be a good gesture. And to help balance the scales a bit it wouldn't hurt to have a regular issue dedicated to the children of Indianapolis who happen to have a disability. My friends and I have a wonderful group of men called Dads Appreciating Down Syndrome. I'd like to invite anyone from Indy's Child to come and join us at one of our meetings and or events. I have a great picture of CJ and I at the annual DADS fishing outing that I'm attaching to this e mail. It's my favorite picture. While I'm at it I'll also attach a pic of Gracie and I at the DADS family camp out last year.
I trust that you as a publication will do the right thing here and celebrate our children with us. Not as something to be thrown away or discarded. But as valuable friends and neighbors that have a considerable contribution to make.
In all Sincerity