by Cathy Jo Johnston
On March 30, 2019, I spoke to my congregation about World Down Syndrome Day that was celebrated on March 21. This was so dear to my heart as I was also celebrating the memory of my son, Jacob, whose birthday was March 28—he would have been 30 years old. I had flowers on the altar celebrating his life on this earth and celebrating his everlasting life with Jesus. It was quite emotional. Jacob was born at 7:30 p.m. with Down syndrome. I was not made aware of his condition until 10:30 p.m. when a nurse came in to tell me a pediatrician was coming in to talk with us. I knew that this was not good news.
When the pediatrician walked in the room, he said, “I am sorry, but your son was born with Down syndrome—which is a form of mental retardation.” What a shock that was to my husband and me. Forty percent of children born with Down syndrome have a heart problem. So, at midnight they transferred Jacob to Minneapolis Children’s Hospital to check his heart. They stated that if everything was okay he would be brought back to me. At 6:30 a.m. the next morning, I was contacted by a pediatric cardiologist who stated that my son had a severe heart condition and would need open-heart surgery when he got to be about 10 pounds. A couple hours later, I received another call from a doctor who said that they believed Jacob had Hirschsprung’s disease, a congenital condition in which the rectum and part of the colon fail to develop a normal system of nerves and, consequently, feces accumulate in the colon following birth. Jacob would need surgery as soon as possible. I didn’t know when the bad news would stop.
My mother flew in from Illinois, which she was planning to do anyway. We left the hospital and went directly to Minneapolis Children’s Hospital and met my pastor so Jacob could be baptized as we did not know if he would make it through the surgery. When I arrived at the Neonatal Intensive Care Unit (NICU) and told the nurses that I was Jacob’s mother, they all smiled and said they had all been fighting to take care of this precious little boy. It was so hard to see him, knowing what he would endure so early in his life on earth. I was confused as I did not know why God had given me this little boy and was now praying to God to help me take care of him.
I could go on and on and on, but I now know why God gave me Jacob. Even though I only had him for one year and 22 days, he was the most precious gift I could have received. I was so blessed to have been his mother. I learned all the special things that I had to do daily to take care of him. I joined a support group with so many wonderful people. I remember being at the hospital one day and having a nurse come up to me and say, “I am so glad to see that you kept your child.” I was shocked by that statement and responded, “What do you mean? This is my son. I would never ever think of such a thing.” She stated that oftentimes when children have severe medical issues the parents just give up. I was so sad to hear that.
I have so many videos and pictures of Jacob. He was the sweetest little boy, and I think of him every day. On April 19, 1990, Jacob had his second open-heart surgery. The surgery went very well; however, when they took him off the heart/lung machine, his little heart just would not work. That was the saddest day of my life. I had to see him and hold him. They brought Jacob into the chapel, and we all held him for the longest time.
Jacob’s funeral was beautiful and attended by so many people whose lives he had touched. In October of 1991, Shirley Volbrecht, a member of Concordia, approached me. She had become a very dear friend of mine as she had a daughter, Sue, that had Down syndrome also. She asked if I would be interested in becoming a coach for Special Olympics. Well, why not! We started with nine athletes and as of today have over 300. I cannot imagine my life without these special people that have Down syndrome. They truly are the ones that teach us the lessons in life.
I have two daughters, Amanda, 31, and Hannah, 24. When they are out and about and see a person with special needs, they get a big smile and usually go up and introduce themselves and tell them how happy they are to meet them. When people tell me how wonderful it is what I do, I tell them it’s not what I do, it’s what I get back in return.
Sue, who is featured in Lutherans For Life’s brochure Jesus Loves Me and Those with Down Syndrome, was a very special person in my life. I was her Sunday school teacher for many years. I taught the Breakthrough Class, a special Bible class for people with disabilities. Sue would also stay at my house when her parents would go on vacation. One time she was with me for three weeks. She was part of our family, and we all loved her so much, as she did us. Sue passed away but is still in the hearts of so many that were touched by her life.
Again, I could go on and on. If people could only see what love and beauty come out of these special people with Down syndrome, it would change their lives for the better. I can’t imagine life without these special human beings that make us realize how precious life is.
I loved the story about Elly and her love of Jesus and people, too. People with Down syndrome just want to be loved and appreciated for who they are. God does not make mistakes!
I had tears when I was speaking to the congregation, but they were tears of joy from all that God has given me. I know that the message I gave touched many people. As I was handing out the brochures, I was greeted by many hugs and know that my message was well received.