Eight years of Down syndrome

We recently celebrated the eighth birthday of our son second son, Cooper. Cooper arrived in our lives eight years ago and we entered a world that we knew nothing about nor did we want to be part of it. See, our son Cooper has Down syndrome so eight years ago, we became parents of a child with special needs. I wish I could say that I handled this graciously, but, the truth is I really did not. This was not what I wanted, it was not what I had prayed for and I remember months of walking through life thinking, "I'm going to wake up and this nightmare will be over." Eventually, the nightmare did end, not because Cooper changed but because I began to accept that Down syndrome was in our lives and that it was never going away. I accepted that we were on a new journey and though it was different than the one we thought we wanted, it has been surprisingly one of the best journeys we could have. So, in honor of my sweet Coop, here are eight things I've learned in eight years of parenting a child who has Down syndrome.

1. His smile and his sweet little face make my heart burst with joy. A family friend who also has a son with Down syndrome visited me in the hospital right after Cooper was born. I will never forget her telling me this is not a bad thing and that he really will be more like other children than he will be different. She was so right! I don't view him nor is he less than because he has Down syndrome. The kid is smart too, just tonight, as we had the kids clean up the playroom, Cooper went and grabbed a bucket and began to act like he was about to throw up. Just as the other kids finished cleaning and began to play, however, Cooper had a mysteriously miraculous healing! He has learned to try to get what he wants just like any other child.

2. My love for that boy is as deep and intense as my love for each of my other children. The fact that Cooper has Down syndrome and parenting him is sometimes different than parenting my other boys has no bearing on my love for him. I still hold him and thank God daily that I get to be his mom. In full disclosure, however, it did take me a while to get to that point because I felt that to thank God for Cooper meant that I was thanking him for Down syndrome and that was not how I felt. While I would still prefer Down syndrome to not be part of our lives, I am still thankful for Cooper and who he is.

3. Some days are really disappointing and hard, some days are really, really hard. There are days when it feels like we take two steps forward and three steps back with Cooper. There are days that are extremely frustrating and we wonder if he will ever get past a particular stage, will he ever learn a particular concept. The truth is Cooper will move through the different stages in life, he will learn life skills but there are some things that he may not ever be able to do without help and guidance. We have to fight for him and advocate for him harder and louder than we do our other children. We have to figure out how we are going to handle when others are not kind to him or to us. We have to teach his siblings how to react when others are not kind. We are responsible for showing the world around him what he is capable of and to not put limits on what he can learn and achieve. We have to remind ourselves to not give in or give up when we have difficult days or difficult seasons.

4. I am not defined by the fact that I have a child with Down syndrome. I am a child of God, I am a wife, a mother, a daughter, a sister, a friend, and a host of other things. Down syndrome is part of our lives but it is not the defining factor in who I am as a person. Yes, it is a big part of our lives but at the same time, it is only a sliver of everything else that defines who I am, and for that matter who he is.

5. I am not a special parent. Allow me to step on my soap box for just a moment. If you have ever said, "God only gives special children to special parents," please stop whatever you are doing and go, and by go I mean run and apologize to whomever you've said that. Here's the truth, the snarky part of me wants to reply with a response like this, "oh yeah, then let's trade places and you can be special." I am not any more special than you or anybody else because I have a child with special needs. Nor am I doing something that you could never do. God desires that in all areas of our lives we rely on Him, having a child with special needs tends to heighten that sense of reliance on God. He does not give us a life full of things we can handle, He gives a life where we are allowed to draw near to Him and to depend on Him. What a privilege it is to know that we cannot get through this life by ourselves but to know that we have a God who will help us in our need and supply us with what we need. Cooper was not given to us because we can handle it or because we are more special than anybody else, rather, Cooper was given to us so that God can show off and so that God can show this world how special He is.

6. My other children are positively impacted because they have Cooper as their brother. As is true of any family, my boys all have very different personalities. But in each of them, I see a sensitivity toward their brother Cooper and toward others. I see them willingly embrace and befriend other children who have special needs. Because of Cooper, they have a love and acceptance of people who are different from them and for that I thank God that we have the privilege of having Cooper in our family.

7. Cooper's life matters and he has been used to draw people to the Lord. I could give many examples of this, however, I think this story speaks for itself. Click the link and check out our friend John's story and how Cooper impacted his life. I believe as Cooper gets older, there will be countless stories of how his life spoke of God's great love and redemption for our hurting world.

8. The world still needs to be educated about individuals with Down syndrome. According to the National Down syndrome Congress, approximately 6,000 babies are born with Down syndrome each year in the US. Considering, the number of children born each year, this is not a large number meaning many people have not spent much time around anyone who has Down syndrome. As a result, most people do not understand how to interact, engage, and even befriend individuals with Down syndrome. We try to use whatever opportunities are available to us to help people learn about the talents and abilities of people who have Down syndrome. The stares, the questions, the comments are all opportunities for us to help others understand what Down syndrome is and how it affects people. More than anything, it gives us the opportunity to highlight what individuals with Down syndrome and other special needs can achieve.

If you would like to learn more about Down syndrome check out the the National Down Syndrome Congress at www.ndsccenter.org. If you are looking for ways to get involved locally please check out www.dsamemphis.org.

Posted by Amanda Savage at 3:17 AM