I have been a parent of a child with special needs for about 17 months now. It has been a journey that started off as shocking. When our 4th child was born, we found out she was born with Down Syndrome (DS). Through our belief that every human life is made from God, in the image of God, and knit together in the womb by God, we knew a blessing had been given to us—but it was still a shock. When our tears dried and the dust settled on our new normal, we started to get to know our new little gift, our Joy. While Joy’s health has been good, there are many challenges she faces that typical children do not face. There is the constant worry that we are not doing everything we can to help her development. These are worries and fears we face with all of our children, but they are amplified with Joy. My greatest worry is for her heart. Not her physical heart (thank God it is doing great), but for her soul, her emotions.
To say Joy has been a delight to our lives would be a dramatic understatement. She is a little sunshine to everyone she comes in contact with. Her siblings cannot wait to wake up every morning and hug her. They constantly fight over who gets to play with Joy. God did not make a mistake…He never does. He always takes what is difficult and, given enough time, He turns it into something very beautiful. It is never in our time, but always in His.
Now, on to what I need your help with.
I do not need money to help with Joy (although therapies and doctors visits are very pricey.). I do not need you to take care of her (although, if you want to watch her and the other three I am never opposed to date night with my wife). I need you to love her. No, I mean really love her like a person.
One thing my wife and I have learned through this journey is that people are people no matter their physical limitation or intellectual capacity. What has been heartbreaking is the colossal ignorance of society in general. As I look at the speck in society’s eye let me first say that this has been a log in my own eye that Joy is helping remove. While I have always tried to love people, my comfort level with those with special needs has been limited. Most people are uncomfortable when they are around someone with special needs. They do not know how to act; they do not know what to say. The great irony in this is that while typical people can be very judgmental, those with special needs are mostly loving and accepting. There is no reason to feel weird other than the fear of the unknown.
2 things I need help with:
It seems the answer to the “problem” of children with DS is making sure that you get tested while you are pregnant and have time to get an abortion. This is harsh but it is just the reality. Depending on the studies you look at, between 80-90% of children with DS are killed in the womb. My soul trembles at the joy and hope that is being stolen from our dark world. What a horrible thing that families would exterminate their children because they are different. I need your help. If you are tested and the test comes back that it is probable that your child has DS please allow that child to have life. If you cannot handle the stress, then allow your child to be put up for adoption. I have been told that there is a waiting list of families who specifically want to adopt children with DS. Choose life.
The second way I need your help is simple–this: please love Joy like a real person! I know this may sound odd but it is something that bothers my wife and I. People with DS are just people! They may move a little slower. They may not be able to do higher levels of math and some of them may talk funny (For some people, this has to do with their hearing and the size of their tongue.) THEY ARE JUST PEOPLE! They love, they laugh, they hurt, they cry, they have dreams, they have ambitions and they have feelings. I see so many posts and articles on the internet by well meaning people (many times I am tagged in these or they are shared on my facebook wall) that frustrate me. Let me give you an example of what I am talking about. I have seen a number of young girls with DS that may be asked out to the prom by a popular boy in school. The boy makes a big deal about it and it goes viral and makes everyone feel good that the typical popular boy takes out the sweet little girl with DS. It is heartwarming and makes that boy feel like he is really making a difference. But I don’t think of it that way. I am that little girl’s daddy! That little girl is not a puppy or a party favor. That girl has real feelings and emotions that, to me, are way more important than someone having a “photo opportunity.” I come home to that little girl who may be crying on her pillow because the boy who took her to the prom never called her again. She doesn’t understand why he won’t take her out again. He had a great night and everyone applauded him, but my little girl is left with the feelings of inadequacy and hurt because she knows she is different. She knows she has DS and a typical boy would never care for her in that way. I used to struggle with how much my daughter would know. Would she be high functioning? Now I struggle with a different battle. I am afraid she will know too much. I am afraid she will be too ‘typical’ and still have DS. I am afraid that she will feel the sting of being a young teenage girl that stops getting asked to hang out with the girls who were her friends when they were little. I am afraid that she will not understand why she might not be able to get her drivers license when her brother and sisters did. I am afraid these and a hundred other little things that most parents don’t have to think about. I will do my best to help her through it. I know she is strong. I know she will bring light everywhere she goes. But I wrote this just to bring a little perspective to those of you who may not have a child with DS.
I need your help. I need you to treat Joy and other people like her, like a person. Take time to remember that she has the same feelings and desires that you do. Treat her as a fellow image bearer of God! Just like every person that is typical is an original, so each person with DS is not like the next. Be careful to not make the assumption that all people with DS are the same. Thank you for your help.