When people discover one of my three boys, Wesley, is a child with a disability, the usual reply I receive is “I’m sorry.”
“Please don’t be sorry, I reply. 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.
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.
Hogan and Wesley on Oprah.
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 the1990 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.
Instead of walking with you,
I will crawl with you.
Instead of talking with you,
I will find ways to communicate with you.
Instead of isolating you,
I will create adventures for you.
Instead of focusing on what you cannot do,
I will reward you with love for what you can do.
Instead of feeling sorry for you,
I will respect you.
From that day on I lived my life with Wesley by these 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 a 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.
Don’t use my disability as a crutch for sympathy.
I don’t deserve or want sympathy from you or other people. Instead of pity, please respect and embrace me for who I am. Find ways to include me in daily activities and help me build relationships with other children and strangers. Lead by example and show people how to embrace me as a human being.
I’m a child with a disability, but that doesn’t mean you need to treat me special or different.
Don’t feel as if I need special treatment. Instead, treat me like a “normal” child. All you need to do is love, discipline and guide me the same way you do my brothers.
Life with me will not be as difficult as you might think.
There is no doubt you’ll need to deal with many difficult challenges other parents will never experience or understand. Instead of dwelling on the challenges of caring for me, dad, look at the bright side. There are many benefits to having me as your son. Some include that I will never argue or talk back to you. I won’t ask you for toys, a car, money or other luxury items you can’t afford. I’ll never make bad decisions, commit a crime, take drugs, drive drunk or hurt anyone.
Don’t beat yourself up.
You’re human dad. It will be normal to experience moments in which you feel robbed from having a “normal” father-child relationship and overwhelmed with the responsibilities of caring for m. Instead of dwelling on what will never be with me relish the day when we will both have our special moment together in heaven.
Let me go when the time is right for you.
I don’t expect you to play super parent and feel guilty about placing me in a home with other disabled children. Instead of burdening yourself with full responsibility to be my caregiver 24/7, I give you permission to find loving people who will embrace me the way you do and provide me with the quality of care I deserve. I want you to have peace of mind knowing that you did everything in your power to care for me and be the best dad.
Wesley is now 28-years-old. I have been blessed to find caring and dedicated people, like Henk and Catherine Brady and Susan Santo, who have committed themselves to providing Wesley with the quality of care he and the other children with special needs who live in the home deserve.
Thanks to Henk, Catherine, Susan and their wonderful staff there is comfort and peace in knowing that I have lived up to Wesley’s expectations of me as his dad.
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Photo credit: Hogan Hilling