Super Dadvocate: Hogan Hilling Making a Difference!
Our Super Dadvocate Hogan Hilling! An Awakening Moment With My Disabled Child, Wesley
When people discover that one of my three boys, Wesley, is a child with a disability, the usual reply I receive is, “I’m sorry.” I always reply, “Please don’t be sorry, he is my son and a blessing just like his two brothers.”
For many parents of children with disabilities, it isn’t easy to accept and embrace their child for various reasons, which are too complicated to explain. However, I feel fortunate that I fully embraced Wesley. You see, I don’t see the disability…I just see Wesley. Wesley is diagnosed with Angelman Syndrome. It is a result of damage to the 15th chromosome during conception. He cannot talk, walk and needs 24/7 care.
After I received the news of Wesley’s diagnosis, like most parents, I was devastated. I experienced a brief period of mourning, in which dreams like playing catch with him, watching him play sports, graduate from high school and college; and maybe marry and become a parent were no longer possible. I also experienced guilt, anxiety, depression, fear and anger. All these emotions left me wondering…“Why Wesley and why me Lord?”
A year later, however, my attitude about life with Wesley changed for the better after I watched the 1990 movie Awakenings. The movie is about Dr. Malcolm Sayer, played by Robin Williams, a dedicated and caring physician who works with patients that survived the 1917-1928 encephalitis lethargica epidemic.
After Sayer attended a lecture about the drug L-Dopa and its success with Parkinson patients, he believes the drug may offer a breakthrough with his group of patients. Sayer is given permission to conduct a trial run with one of his patients, Leonard Lowe, played by Robert DeNiro. The L-Dopa yields astounding results as Lowe completely “awakens” from his catatonic state, which inspires Sayer to seek funding for all his patients. But, while Sayer and the hospital administrators continue to delight in the success of L-Dopa, they discover it is a temporary triumph and instruct Sayer to no longer administer L-Dopa to Lowe or any of his patients. Sayer attempts to plead his case to continue and justify his reason to do so with this explanation. Although the ‘awakening’ did not last, another such awakening of learning to appreciate and live life took place.
Despite Sayer’s efforts, the hospital administrators did not change their mind.
I didn’t realize the impact of Sayer’s comment until I arrived home and experienced my own “Awakening” about Wesley.
I grabbed paper and pen and wrote this poem.
From that day on I lived my life with Wesley by those words. Along the way, I learned some valuable life lessons from him; some of which I’d like to share with you now.
What happened to me, Dad, was an act of nature not God. God is not punishing you for some of the bad choices you made in the past. Nor did God purposely cause the deletion in the chromosome as a way to test your resilience. It isn’t fair for you to direct your disappointment or anger at God. Instead you should find strength through God to embrace me as your son and do everything in your power to provide me with a full life.
It’s not fair for you to question God. But if you’d like to ask him a question, ask the right one. I’m the one with the damaged chromosome. Instead of asking “Why me?” a better question to ask is “Why not me?” You’re my dad and you should strive to live up to my expectations of you as my dad.
If it walks, looks and sounds like a duck, it’s a duck. The reality is that I am disabled and that I can’t hide it. Instead of refusing to accept my diagnosis, embrace it, and don’t allow ignorant comments you receive from people to detour you from speaking on my behalf and using that moment to educate and enlighten them about the value of my life on earth.
I’m not broken, Dad. Everyone in this world, including you, has a disability. Mine is more profound than most people, but that doesn’t mean I’m broken or less of a person. Instead of focusing on my disability, treat me like a human being as you do my brothers and other people.
Please don’t try to fix me. The truth is I don’t need fixing. I’ll never be able to talk; wrestle and play catch with you; play sports; marry or become a parent; or experience father-child moments like other “normal” dads with their “normal” children. Instead let’s show the world how it is possible (despite my disability) to create meaningful memories and dreams together that is special to you and me.
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