January 29, 1983, the day my oldest son Joshua was born. It is 12:05 AM and I am exhausted and excited. As a brand-new father, I was young and had dreams of how I was going to teach my son to play baseball, football, basketball, and golf. He was going to be a superstar!!! I just knew it! One day I would be sitting in the stands watching him play, cheering him on, and after he scored his one-millionth touchdown in a game, I would say, “Yep, that’s MY boy! Taught him everything he knows!” Of course, he would turn to the camera’s and say, “Hi Mom!” but, I was okay with that. Even though my son hadn’t done anything yet, I was proud of him and all the things he would grow up to do.
I was surprised and quite frankly caught off guard by the depth and the amount of love I had for this little guy I was holding in my arms for the first time. I remember thinking, “I’m his father, and I’m responsible for him. Oh, how I love him. He is my son!”
To be honest, I didn’t know you could love someone you just met so profoundly, so quickly. That was the way it was with him. I knew the day he was born that he was special, and he was going to change my life. I just didn’t know then how accurate of a statement that would prove to be.
Joshua and I did everything together. When it was time for him to take a nap, he slept on my chest. I didn’t have a problem changing his diapers, feeding him or playing with him. I loved being a father, especially being his father. We would laugh together, play together. He quickly became my world, and he was so much fun to have around. I found out that he was pretty flexible too. I could bend him in half and tickle him, and he would just giggle, begging me with his laugh for more.
When Joshua was five months old, we suspected something was wrong with him. Physically he looked perfectly healthy; he just wasn't doing some of the things you'd expect a five-month-old baby to do, like sit up, roll over, or start to crawl.
At eight months, Joshua was diagnosed with “mixed cerebral palsy.” Bottom line: he would be a quadriplegic for the rest of his life. He would never crawl, never walk, never run, and never talk, ever! Never learn how to play sports, never learn how to drive a car, never fall in love, never get married, never have children of his own, never say “Hey Dad I love you.”
I was devastated, my initial response was, “Well, God must know what He's doing. He must think we can handle this challenge.” I’m not sure if I believed that or whether I felt that was the thing to say at a time like this.
The doctors told us that they do not normally see cerebral palsy as a birth defect. Typically it is caused by head trauma or a traumatic brain injury like the lack of oxygen during birth, a car accident, falling off a bike, or being thrown from a horse. They also said that CP, as it’s called, as a birth-defect was extremely rare, something like nine million to one odds. They said we could have more children and they would be perfectly healthy, so we were hopeful. Sure, I was sad for my son Joshua, but my dreams for a superstar were still alive, or so I thought.
After Joshua had been diagnosed, nothing changed. He was still my son, I was hopelessly in love with him and how beautiful and precious he was. He was everything to me, and he was still exceptional. To be honest, at the time, I didn’t know I needed him so much. He was still a baby, so the impact of caring for a child with special needs would not take full effect for another year or so.
If you have never had a child with special needs, then it’s hard for you to comprehend the burden. It’s having to care for someone else 24/7. They never learn to care for themselves. You must change their diapers. You must feed them. You must dress them. You must lift them and carry them everywhere you go. When they are hurt or sick, you can try to comfort them, but you never really know whether you are getting through or not. You never really know if they understand what you are saying. And this burden magnifies every year. They continue to grow, get taller, get heavier, and you don’t ever seem to get a break. No one understands your burden, your heartache, your disappointment, your pain or your crushed dreams. No one seems to be able to comfort you and help you feel that it is going to be ok. You feel desperately alone, forsaken!
Somehow, I’m not sure how you move forward, you cope. As time goes on, the burden becomes more and more challenging, but somehow you get stronger, you get used to the burden, you manage, you find a way to survive. You avoid things that are too difficult, and you do things that are a bit easier. You find short-cuts. The heartache, disappointment, and pain lessen; however, they never go away. You want answers, and there are none to be found. You ask God why, but He just ignores you as if He doesn’t care.
About 11 months after we found out how “special” Joshua was, my second son Matthew arrived. Like his brother, he looked perfectly normal, no problems with the birth, perfectly healthy.
Right away Matthew “seemed” different than his brother Joshua. He “felt” healthy and not disabled. I’m not sure how much of that was wishful thinking and how much of that was true. However, when Matthew was five months old, we knew, beyond a shadow of a doubt that he, like his brother, had been born with mixed-cerebral-palsy and he would also be a quadriplegic for the rest of his life as well.
Two sons, brothers, both born with mixed cerebral palsy. I'd like to say my response to this second challenge was as noble as the first. However, that would be a lie.
Now I was mad. Mad at God. Shaking my fist at Him saying, “Who do you think you are? What are you trying to do to me? What have I ever done to deserve this from you? Why are YOU picking on me?” Even, “How dare you rob me of all of my dreams!” (Of course I said this in the snottiest, nastiest tone I could muster.)
I know I was harsh, angry, pretty much a jerk. I wanted answers from God. Unfortunately, I did not get any answers; I only got silence!
If you know anything about God, He rarely feels the need to explain Himself and what He does. Consequently, and at times, talking to Him was like talking to a brick wall, and everything was bouncing off. I showed Him though. If He was not going to talk to me and give me the answers I demanded, then I wasn’t going to speak to Him either.
Stubbornly, I stayed mad at God for 12-years. Oh sure, I believed in Him. After all, I became a disciple of Jesus Christ when I was 15 years old. Nevertheless, God wasn’t doing a good job of cooperating with me and my plans, so I figured I had a right to be mad at Him. Then again, I was more than mad; I was furious at how He had ruined my life. How He had given me not one, but two boys with special needs. How am I ever going to deal with this burden?
Understand, I’ve never held the fact that my two boys had special needs against them. In His infinite wisdom, God took the brunt of my wrath for this fact. In short, God protected them by allowing me to vent my anger and frustration on Him. My boys have always been so very precious and special to me. Oh sure, I’ve gotten upset at them when they are all dressed, in their wheelchairs and ready for school, and the school bus comes to pick them up, and one of them throws up all over himself. And now I must take him out of his wheelchair, clean him and the wheelchair up, get him dressed again, put him back into his wheelchair and drive him to school and try not to be late for work. One morning it would be one son, the next morning it would be the other. In fact, some mornings it would be both. Honestly, I’m not sure how I survived.
On occasion, I would talk to God if I was in a bind and needed something. If He didn’t respond the way I thought He should, I just chalked that up to Him hating on me some more. I guess He had nothing better to do then to pick on poor little me.
Come to think of it; I was rude and obnoxious to Him. I’m not sure why He didn’t send a bolt of lightning or two my way! I most certainly deserved them.
Now imagine my shame when I finally woke up after being angry at God for 12-years and realized: God was never “picking” on me, He was protecting me, loving me, blessing me. I was just too stubborn to see it.
You see, I have never had to worry about my boys getting bad grades in school, getting into fights, shoplifting, getting drunk then driving a car and possibly killing someone, getting addicted to drugs and living on the street, robbing, stealing, or hurting other people.
No, my boys only know how to do one thing, and that is to Love! Anyone who comes near them, they will love. They will smile, they will laugh, and they will do their best to play with them.
You see, ”Perspective.”
What did I learn? What was God teaching me?
To be continued...next week I will share that part of the story.