Someone asked me once “What is it like raising a special needs child like Declan?”
No one had ever asked me such a direct question about my little boy who was born with a tiny piece of his brain missing. He cannot speak, is physically challenged, intellectually delayed and he will never live independently.
Without hesitation, as though I had been waiting for someone to ask me a question I hadn’t even considered, I said “It’s like having a crush on someone who will never love you the way you love them.”
Declan was five at the time and I had begun to accept that I would never enjoy the affection a mother shares with her son. He avoided eye contact and hated to be hugged. I had to beg him to let me kiss him on the head pleading for a “Mommy Kiss,” but most of the time he would wrestle away from me. I settled in to a life of chasing whatever fleeting moments of tenderness he would allow me. If he let me cuddle with him I held on for as long as he would allow me to. To this day I am late for anything and everything if it means my son wants me to hold him.
Three years ago when Declan was 8 his ABA ( applied behavioral analysis) therapists helped him learn how to point. It sounds so simple, but he had never developed the ability to extend one finger to communicate preference, direction or identification. Suddenly, we were having conversations that had not previously been possible. I would point at his bed to say “It’s bedtime.” He would point at his bedroom door to say “I don’t want to.”
Our worlds changed forever.
Several weeks later I was writing at my desk when Declan tugged on my sleeve and pulled me toward him. I assumed he was thirsty or hungry, but he pulled me down to kneel in front of him. This was new. I felt frozen in time. Something was happening. He looked me in the eyes and started leaning in and suddenly he kissed me! He KISSED ME! In the flash of a second I was awash in happiness. I had resigned myself to a lifetime of begging for “Mommy Kisses.” Now, I had my first “Declan Kiss.”
Of all the moments of my life, this continues to reign as one of the most glorious.
And it has led me to never again lower my expectations or accept that things will never change.
Originally published on July 24, 2018 by SpeakerMatch Speakers Bureau