Forever Child

Earlier this month, while driving to Camp Lo-Mia for girl's camp Evie and me had a friend, Sarah, ride up with us. As we drove we had an opportunity to talk, and we got on the topic of special needs children. Just as we were descending the mountain into Camp Verde, Sarah made a comment that stuck with me. She had mentioned that they too have a "forever child" in their family.

For a second I was caught off guard by the phrase. Then, as I played it again in my mind I was taken aback by the sweet utility of such a phrase.

I've never liked saying "we have a son who is autistic," because it is a lie. We have a son, and he has autism. It is a condition he has, not what he is. Daniel Gottlieb, in his stirring Letters to Sam, wrote about such labeling:
A couple of weeks after my accident, I was lying in my hospital bed and I heard my doctor in the hallway saying, "That quad in 301 - did he get his medication?" Just a couple of weeks earlier I had been Dr. Gottlieb in some circles. In other circles, Dan. In others, Daddy. And now I was "the quad"?
Well, Sam, over the years I have learned that I am not a quadriplegic. I have quadriplegia. You are not autistic. You have autism. Because of our labels, some people will be afraid to approach us. Others will be cautious about talking to us or trusting us. With my spinal cord injury and your autism, we look different and act different. But we can also teach people...that no matter what happens to our bodies or our minds, our souls remain whole.
I am in full agreement with Dr. Gottlieb about potentials, and labels, though I have felt the air rush out of the room when the proverbial elephant enters as the word autism is used. To avoid such uncomfortableness, not for me but for the others in the room, I try to be a little gentler in speaking of our son. I occasionally refer to him as our little rainman, or simply say we have a special needs child. then if they ask for clarification, we drop the autism word and take it from there.

But hearing Sarah's phrase - forever child - I could see the efficacy of such a sweet phrase. It at once captures the essence of Ethan. He is a perpetual 7-year-old in an ever growing adult body. He wears man sized clothes, can grow a simple beard in just a few days if left unshaved, yet he still needs assistance showering, and occasionally wiping. He still loves Elmo, plays with Legos, carries around a ziplock bag of cartoon pictures from the Internet he cut, pasted, printed, and laminated. He still wants to cuddle while watching Muppet Treasure Island, hates the scene in October Sky where Homer Hickam and his dad yell at each other, and cries when Little Foot's mom dies in The Land Before Time; truly he is a forever child.

But all of this talk about forever children is simply a culmination from events which took place this past May when Ethan had his birthday. It is not that shocking that he had a birthday, since he has had them every year in May for the past two decades. But this past birthday Ethan turned 20. He officially exited the teenage years.

But, not so fast - as most things work in this house. Somebody was not too happy about turning twenty. This conversation with me, or other conversations like this, took place whenever he was asked how old he was going to be:

     Ethan, how old are you going to be on your birthday?


     Aren't you already nineteen?


     So how old will you be on your birthday?
     Won't you be twenty?
NO! I don't want to be twenty. I don't want to be a man. I want to be a little boy forever. I don't want to be old like you, or grandpa, and walk like this [begins walking with an imaginary cane and slumped over with a sore back]
     You know sweet boy, I'm certain you're going to get your wish.
But, let's be clear. When I say forever child, I don't actually mean forever. Believe me I KNOW this won't last FOR-EV-ER. You see, when Elder Jeffrey R Holland spoke in General Conference in October 2013, in his talk "Like a Broken Vessel" I didn't hear him speak about depression, or mental illness, as most did, I heard the Spirit speak about autism.
I bear witness of that day when loved ones whom we knew to have disabilities in mortality will stand before us glorified and grand, breathtakingly perfect in body and mind. What a thrilling moment that will be! I do not know whether we will be happier for ourselves that we have witnessed such a miracle or happier for them that they are fully perfect and finally “free at last."
That is a day I look forward to, but for now, here in mortality, and all the todays and tomorrows that will come before "that day" arrives, he is and will be my Forever Child.

Popular Posts