Did you hear the story about a man who was filthy rich, but when he died his family didn’t even attend his funeral? I’m sure you’ve heard of it.
In keeping with the theme of this article, I would like to preface my backstory by relating it to another backstory Thomas Wayne’s. You know him, Batman’s dad.
Well, why am I comparing myself to Batman’s dad anyway? Am I a gifted physician and philanthropist? No, I’m broke. Then, why am I comparing myself to Bruce’s dad? Because much like Batman’s dad, I took a bullet for my family. When confronted with a loaded gun, he didn’t hesitate to face his attacker. His heroic deed may seem trivial because his wife, Martha, was shot, too, leaving poor Bruce with no parents.
Let’s not get too technical about Thomas’ backstory, whether he was a caring, loving father or distant, stern, bestowing more kindness on his patients than his son. Um, this is my backstory, remember? Just like Thomas & Martha Wayne, we confronted a loaded gun, too. I took most of the ammunition, and my wife suffered as well. But, the only difference is we didn’t die. We survived it. But, it left me paralyzed for a long period.
The deadly ammunition wasn’t literal; it was Autism & Intellectual Disability.
You may think it’s not that big of a deal. But, please don’t judge yet, hear me out. “Marriage is hard. Even in the best of circumstances, with a couple who is head over heels in love with each other, there will be difficult times. I think we have all heard the much-touted statistic that states that 50% of all marriages end in divorce. This percentage jumps to between 80% and 90% for couples who have a child with special needs.” (Excerpt from Jen Thorpe’s article)
I faced a metaphorical loaded weapon, and my choice was: be broke or broken. I chose to be broke. I don’t want a broken family.
My wife and I are fortunate enough to have been raised by both parents. We don’t want to break this cycle. Our parents may have faced hard times but powered through it. Our situation may be different from theirs, so, why couldn’t we do the same? Whatever happens, happens. Just tough it out.
Every situation is different. My wife didn’t have any pregnancy complications with our firstborn son; however, she had pregnancy complications with the second and third child. My firstborn son nearly died after childbirth, but our middle child and youngest delivered with no problem. I’m sure you’re sensing a pattern here. My firstborn is a tough kid.
He survived death, yet, still faces an uphill battle with Autism & Intellectual Disability. We are merely supporting characters in his heroic journey. “Your son is handsome. Um…he looks okay.” I cringed every time I hear this from an individual who probably utters their sentiment out of pure ignorance, with a hint of heavy judgment. Again, as I said earlier, “Every situation is different.”
Let me explain to you how different my firstborn son is from other special needs child. First, he received a diagnosis of Autism, then Intellectual Disability. Not one diagnosis, but two. Ever since the diagnosis, he’s seen and continues to see a lot of “ist”: Psychologist, Pediatric Specialist, Neurologist, Geneticist, Orthopedist, Audiologist, Optometrist, Dentist, Dermatologist, Gastroenterologist, Speech Therapist, Occupational Therapist, Behaviorist, Physical Therapist. I may have forgotten one or two.
Nevertheless, I’m sure you get the gist. He is nonverbal. At times, mostly when he was younger, he would place different objects in his mouth with no regard for his safety. He missed school often because he gets sick. It means that someone has to care for him 24/7, but that’s not all. When he was younger, he refused to eat. And, we do our best to feed him, yet, he would vomit voluntarily. It was hard for him to gain weight, and was often sickly. It was an everyday occurrence, for several years.
He needs assistance with: feeding, bathing, brushing his teeth, toileting, putting his clothes, taking off his clothes & shoes, basically everything. He still eats pureed food, which means we would blend milk, fruit, baby cereal (multigrain oatmeal) and he eats it three times a day. Going to different places becomes a challenge because, first, he refuses to eat, second, all of the equipment and ingredients have to pack.
Thank God, now he sometimes eats pizza, mac and cheese, and snack on pretzels, Cheeze-it crackers. He only drinks milk and at times will drink water. He’s gained weight now. He still doesn’t know how to feed himself; the important thing, however, is that he rarely refuses to eat. On occasion, he would vomit, but that only happens if he’s getting sick.
That is why I chose to be his caregiver because I know that it would be impossible for my wife to handle him while she nurtures, cares for growing kids. Because of my decision, I have been mocked, ridiculed by the ones who should be supporting me in the first place. But, it’s okay. I’m okay with it. I’m not even mad at them.
I may be broke, but at least I’m not broken. I know that I’m not filthy rich, but when I die, I can assure you that my family will be at the funeral. But, then again, how would I know that? I’m already dead. Don’t feel bad for me; I’m not sharing my story to elicit pity. I want to be understood.
END OF BACKSTORY