What Will My Child Be Like?
Our son, James is about to have a big birthday! He is turning 23...He calls it his "Michael Jordan" birthday. Every day for many months, he has been looking forward to this. He counts down the months, weeks and days and every day, he asks "You excited my birthday?Almost here! I me exciting! I me happy!" (his own special and endearing sentence structure) Then he goes on to plan every detail that he wants to happen. This is just a glimpse into the life of James. He is excited over small things and big things. He had a burst of joy last night when he found out we were having hot dogs and hamburgers at church...He does a "happy dance" over so many small things that we take for granted. He enjoys life!
I think back to when he was born. We had no idea what he would be like, and I remember asking the Lord "Can you help him to let me know what he needs and can you help me to make him happy?" Well, God started answering that prayer in the next few months as we got to know our little guy... His sweet little smile and expressions of joy became so precious to us.
Even before he had words, he was able to communicate to us what he needed.
We learned to celebrate every milestone he gained, because he had to work so hard for them. We cheered him on and learned to slow down and enjoy moments with him.
Here we are, 23 years later, and I have to say that James brings more joy to our home than we could have ever imagined. He enjoys life, his family, relationships, experiences, church, volunteering, art classes, musical theatre classes, working out, playing basket ball, WWE, digging in the dirt, the dollar store, chips and a diet coke more than anyone I know. I thought about my prayer this morning...remembering that moment when I was holding him...not sure of what the future would be for him...when I asked God to help me to make him happy. I believe He answered that prayer above and beyond...but I realize now that even though I do all I can to make him happy (and responsible, respectful and kind as well)... it is God who makes him so happy and full of joy. It is a reflection of who God is... God is happy... full of joy...and enjoys the moments. He celebrates every little thing. He actually sings over us with joy! So, I look back over the years... to those moments early on with our little guy. How afraid we were for his future... how we had so many questions.... and how we just wanted him to be happy and I am in awe of what God has done.
God has been so faithful to us to help us in this journey. We are better because of James. We have learned to slow down and celebrate the moments. We have learned how to be happy over small things. We have learned how to be better cheerleaders for each other. We have learned how to be generous with our words of affirmation for each other. James has taught us that.
I never could have imagined what this journey with James could have brought us... but it good and we are grateful. May God give you a glimpse of joy and purpose on your journey today.
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What my Down Syndrome son has taught me
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James Lyons
What my Down Syndrome son has taught me
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.
Eddie Lyons
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