MyBopsBlog: World Down Syndrome Day 2019

Wednesday, March 20, 2019

World Down Syndrome Day 2019

Tomorrow is World Down Syndrome Day! 22 years ago, God gave us our amazing son, James! We have learned so much from our journey with him and he continues to bring such joy to our lives. Several years ago, we started this blog in an effort to encourage other families who had just received a diagnosis. We have not posted lately, but it contains our stories...stories of how God has blessed us through our son. James has made our family better and we are so thankful for him. He is so much fun... he is witty... hard working...loving...and the best dancer! He is now 23 years old, and has graduated from High School. He works out at the gym, goes to classes with an amazing organization called "Art Inspired Academy" here in Springfield, Mo. He volunteers through our church in packing bags of food for "Power Packs" (food we send home on the weekends for kids) and he serves once a month with Ozarks Food Harvest. He has gotten to go the "Night to Shine" Special Needs Prom for the past three years and absolutely loved every minute of it! He enjoys every day and we are so blessed to see him continue to thrive in so many ways! We join in this celebration because we believe that every child is a gift from God and we are so grateful for James!

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First Entry

When our fifth child was born, Cindy and I embarked on a new journey that was not something we would have chosen.

We were expecting our fifth child and we knew it was a boy. When you are expecting a baby there are so many hopes and dreams for that child. We had chosen the name James for our baby. I love the name James. There is something very classic and dignified about it. There are more American presidents with this name than any other name. In the NT James wrote one of my favorite books and was the half brother of Jesus. Naming a child carries many hopes and expectations for his future. Fathers dream of their sons growing up and doing something of great significance. With these thoughts in mind, we had our name ready.

On July 1 James was born. They brought the baby out and I unwrapped him to count toes and fingers and make sure all was ok. Several hours later the anesthesia from the c-section was wearing off and Cindy asked to see our little guy. The nurse brought him in and handed him to me. I held him up for Cindy to see. She stroked his forehead and then asked, "Eddie, is he ok?". I assured her that he was fine. I had counted toes and fingers and they were all there. Then she said, "He just doesn't look like the other children." I felt this dagger go through my heart. She saw something that I had not. Even as I tried to assure her that her fears were unfounded, I knew that a mother's intuition is something that is not to be ignored. They took James back to the nursery.

Later that day we had the moment with our doctor all parents pray will never come. The door opened, our pediatrician walked in. The spirit in the room changed. The gate of her step, the tone of her voice and her demeanor alerted me that something was wrong. I asked if everything was ok. She responded that the baby was doing well, and then the pause. It was a pause that lasted forever, one that you felt in the depths of your soul. "The baby is doing well...but, there is something we need to talk about." And then the news we all pray we will never hear. "I think your baby has Down Syndrome."

Our lives changed forever that day. Having a special needs child is not a problem that gets resolved and then goes away. It is a heaviness, a burden, a challenge, a set of life time limitations, a fog of uncertainty that is never going to go away.

There is so much more to say about those first few days. That will be for another post. What we did not know, that we know now, is that with special challenges also come special joys. Within this world of imperfection and struggle are some very fun times. The truth is that God has and continues to teach me so many things through my special James.

I have learned that an infinite God does not just love the smart and perfect.
I have learned that love for a child is not more because one is smarter than the other.
I have also learned that you can be both retarded (it took me a long time to accept that word in reference to my son) and smart at the same time.
I have learned that there is a special charm that goes with special characteristics of a special kid.

I have called this "MyBopsBlog" because up until James was 11 years old, he referred to himself as "Bops". He learned to write his name in school. J-A-M-E-S, written on his paper and we would ask, what does that say? He would answer with great confidence "Bops". He would introduce himself "Hi, I Bops." Somehow, I always found it so charming. This year, "Bops" has given way to "James". Even though our little guy is growing up and can now say the name we chose for him, "Bops" will always have a special place in my heart.

He is always coming up with cute and fun statements. I hope to share some of those on this blog.

MyBopsBlog

Wednesday, March 20, 2019

World Down Syndrome Day 2019

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