MyBopsBlog: March 2023

Wednesday, March 22, 2023

WORLD DOWN SYNDROME DAY 2023

Tomorrow is WORLD DOWN SYNDROME DAY and we celebrate it … because we have been blessed with our son, James! He has the best personality, is witty, fun and just loves life and his family! God has taught us so much through him . He brings more joy to our family than we could ever imagine!

We did not know 26 years ago, what life would be like with James. 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 smiles 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. 

I thought about my prayer  this morning… remembering that moment when I was holding him…not sure of what the future would be like for him…when I asked God to help me to make him happy. I believe He answered my 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 and 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 I am in awe of what God has done.

James enjoys life!  He brings more joy to our home than we could ever have imagined. He loves his family, enjoys his friends, experiences, church, volunteering, art classes, musical theatre classes, working out, playing basketball, WWE, helping at home, dancing and singing, digging in the dirt, and the daily trip to the Dollar Store to get his diet coke and chips more than anyone I know.

God has been so faithful to us to help us on this journey. We are better because of James. We have learned to slow down and celebrate. We have leaned how to be happy over small things. We have learned how to be better cheerleaders for each other. We have leaned how to be generous with our words of affirmation for each other. James has taught us that. 

*Several years ago, James asked Jesus to come into his heart and several years later he got baptized. It was such a sweet thing to see him respond to the Lord. 

Now, James wants everyone to know the Lord. He volunteers at church and puts all our invite cards together in little bundles and he saves some so he can personally invite people to come to church everywhere he goes. There have been several people that actually go to our church now  because he invited them! 

He also loves to pray. Many times, I hear him praying in his room for his family, for his friends and for concerns. I’ve heard him say in his prayer (while listening at the door)  “God, It’s me.. James”…He has simple faith and it is so sweet to watch him just talk to God.

We could never have imagined what this journey with James could have brought us…but it is good and we are grateful. It has been a journey of faith…learning to trust God… that He would give us what we needed to raise our sweet son. It has also given us a more eternal perspective. James will not always have Down Syndrome… He will live many more years in Heaven with a perfect mind and body….but we have seen on this earth God’s display of His glory and this is just the beginning. May God give you a glimpse of joy and purpose on your journey today.

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 22, 2023

James Lyons

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Eddie Lyons

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