Guest Post: Parenting A Child With Disabilities What Adam Has Taught Me

About the Author: Judy Mallette is the mother of three children.  She learned very early on that children, abled or disabled, teach us more than we can ever teach them. The lessons started, and will never really end, on November 16, 1981. Her son, Adam, was a child with severe developmental disabilities compounded by epilepsy, congenital heart disease, and myriad physical limitations. Adam died, after a lifelong battle, on April 4, 2017.

If you have been following Sarah’s blog, you know that she writes, both eloquently and candidly, about life as a young woman with disabilities. Sarah’s Mother’s Day blog shares observations about her mother‘s life and role in her upbringing. I have no argument with Sarah’s observations, but in parenting my first-born, Adam, I can say with certainty that Adam was the teacher, the brave one, and I the faltering student. And while I won’t minimize the care responsibilities that come with this journey, Adam did more for me than I could ever have done for him. I suspect Chris, Sarah’s mom, will concur…

Although I didn’t know, it, in the beginning, Adam, a fearsome fighter, was also a patient and forgiving teacher. In that tiny, frail body, Adam packed a multi-volume text filled with lessons on resilience, joy, love, and living in the mom

Quite miraculously, Adam survived his first two years of life—most of it spent in a hospital. He survived tricky surgeries, devastating infections, and constant seizures. And while he missed all of the milestones that come in a child’s first two years, he smiled. Adam smiled big — right from the beginning. Looking back, that was my clue into Adam’s resilience and the journey upon which we were to embark.

We live in a small neighborhood and when Adam was small, he had some freedom to roam. If he were out and about with his sisters, he would sometimes wander off. To find him, we simply listened for the sound of a lawnmower or snow blower. That’s where I would head, and that’s where he would be—happy as a clam. At Christmas or birthdays, there was always a bottle of Coca-Cola—right up to his last Christmas. And every time Adam opened this gift, he received it with pure joy.

Adam loved. He loved hard. Adam loved babies, fast cars, family, friends and caregivers, Coca-Cola, Tom Petty, Blue Rodeo and, most of all, his sisters. Make no mistake. Adam could push the sibling buttons at the drop of a hat. However, in times of trouble, he could be counted on to bring a tissue or a blanket when needed. Adam missed his girls sorely when they left home.

Adam rarely cried—as a child or in his adult years. During many bad spells, he just hunkered down and waited it out. He didn’t fall to fear or anticipation. He just knew that when he felt better it was time to start living again, and that is exactly what he did. There was no looking back and no looking forward.  Adam simply grabbed on to whatever joy there was to be had in that fleeting moment of wellness and lived, cheered by the sound of a snowmobile, a bag of Ranch Doritos, or a pretty woman.

To tell you now that I have learned Adam’s lessons would be a falsehood. But try as I might, and I do this for you, Adam, and for those who follow. I do my best to live in and embrace each joyful, loving moment knowing that the good times don’t last forever but neither do the bad. This is how you would want us to carry on.

Adam loved music and particularly this tune by Tom Petty and the Heartbreakers.

I listen to it often . . . it sets my eye, and my heart, on Adam’s prescription for life.

Thank you, Judy, for writing this beautiful insightful article! I have knowledge in a lot of areas but this is one thing I could not have written a blog on. I never got to meet Adam but I wish I could have!

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