A mother’s love knows no bounds

By LEONA CROGAN

At 41 years of age, 20 years ago, I gave birth to a beautiful Down syndrome baby boy named Terry Sean. I was told immediately that the necessary blood work would be done on his tiny little body, but my heart knew they were correct.

Those moments still are still so clear in my mind. First I thought someone had punched me in the stomach. Secondly, I wondered what my 13-year-old son would think (how foolish for me to have even had a concern that). And then all I could think of was I had to talk to someone else who had a Down syndrome child. I knew I would need support from not just my husband, but other parents as well. There was nothing short of a small “family reunion” outside the door just waiting to see if it was a boy or a girl. I am sure the thought of a disability never came into their minds.

With his usual calm demeanor and sense of responsibility, my husband went out first to tell the “cheerleaders” we had a beautiful baby boy who was healthy and who also happened to have Down syndrome. It must have been difficult for him, but I know he wanted to protect me from having to face the first reactions of my dear friends and family.

I didn’t want any pity for myself or my baby. Although the task of raising him seemed daunting, I knew we were going to be OK. Drawing on my sense of humor, I told my best friends and family that he would be the best-dressed kid at school and he wasn’t perfect — just like his mother. It turned tears into laughter.

My first thought as I looked at our beautiful little boy in the neo-natal intensive care unit was how awful it was that he was born prematurely and obviously wasn’t ready to come out of his “safe place” — where he was protected from any stigma of labeling, bullying, unkind looks and words. It just didn’t seem fair that in a nano second our lives had changed forever — and at that point I had no idea what the changes would involve and questioned whether my maternal instincts would be enough to raise him to be the nice young man his brother was.

Terry came home from the hospital. I had lots of support from family and friends. My mother took over as his guardian angel and became not only his best advocate but mine too. My husband and son comforted me when the tears would come and I put on a very happy face in public so there would be no pity for my precious baby. I’d prove to all of them that I could raise a child with a disability probably better than they could raise one without. The early years not so difficult. School began. My mother had moved in with us to be closer to her “golden child” all the time. I had lots of support. He started school. We faced the grueling world of “special education.” I read and I talked to as many people as I could in order to learn to advocate for him. I quickly learned my knowledge would give me the power I needed in order to get him the best school program I could.

Freedom to grow up

Raising him was much easier than working with some of the folks in the school system. When Terry started high school, we could no longer stand the ignorance exhibited by some administrators and we were successful in having him placed in a school district where he wasn’t under a microscope and where he had the freedom to grow up and fully reach his potential.

Word travels fast in the world of special education and by Terry’s example, many other parents began to call. We became fast friends and helped each other with our children’s school programs. Support was escalating from other parents of special needs sons and daughters. We now had the support we needed from other families who understood the daunting task that lay ahead of us and would face for the rest of our lives.

Terry is still in high school and we are in the process of transition. Again, more decisions to make. An entirely new vocabulary has surfaced in our home and is often the topic of conversation. With a good respite worker, we can walk away from it sometimes. We got through the first 20 years, and I know we’ll get through whatever is down the road because now we have supports in place. It’s called “other parents.”

My boy just had his 20th birthday. He had a bowling party with his classmates at school. As I looked at them having the time of their lives, holding hands with their girlfriends and happy that their parents weren’t there, I got a flashback of the day Terry was born and all of the doubts and fears I had about his future. To me this party looked not much different than any other teenage party. I guess the parents and families of these young men and women with special needs had all done OK.

I am proud of what I learned in order to help Terry, but mostly I am proud of him. I taught him, but he taught me more. I am a better person because of him. Certainly my life would have been much easier had he not had Down syndrome. But our lives have been enriched 100 fold by this little fellow who is now a wonderful young man and has far surpassed the expectations of 20 years ago.

And as for me — I too have far surpassed the expectations I ever had for myself. I can no longer be superficial and live in a dream world. I live in reality. I know planning his future will be tough — but the years of raising Terry have taught me that we can do it — we have the support and knowledge. He gives unconditional love to all of us and that is the best gift of all.

X Leona Crogan is on the Family Advisory Council of the Ohio Department of Mental Retardation and Developmental Disabilities. She is a past member of the Mahoning County MRDD Board. She and her family are seen in today’s Years Ago photo at right, shortly after Terry’s birth.