Only A Day Away

My kids are a part of the Veggie Tales generation. Even though we’re not particularly religious anymore, we still appreciate the lessons of love and Monty Python references. My oldest, let’s call him George, still really likes the music, in particular “Bob and Larry Go Country”.

If we’re in the car and it’s his turn to choose the music, the air will be thick with the sounds of The French Peas and Archibald singing “God Bless the USA” and my son asking me for a bald eagle (one of his favorite scripts).

One of the other songs featured is Junior Asparagus and his mom singing “Still the One”, a nod to their mother-son relationship since he starts preschool in the morning. During an impressive guitar solo, they ponder over who the infamous “they” are wondering if these disembodied folk didn’t think he was capable getting into school.

Every time he and I sing along, I’m reminded of the psychiatrist who diagnosed him autistic. He wanted to “prepare” me for what he saw as an inevitable reality of all the things George would never do. He wanted to reassure me that it was okay to “grieve the child who would never be”.

The problem was I already knew what that felt like. At the time, George was only a few months into cancer remission. During the first eight weeks of his chemo cycle, he had an allergic reaction to his chemo treatments and coded in my arms. It was 4 days before his second birthday. In what was an excruciating wait during the moments they literally brought him back, I saw his short life flash past my eyes in a heartbeat. It had already been so difficult for him to be so young.

As the doctors brought him back and his breathing eased into it’s usual rhythm, I thanked everyone I could think of that I didn’t have to mourn the child who lay sleeping in my lap. I know what that feels like, but not because of his neurology.

Almost two a half years later, this well meaning doctor gently tried to explain that learning would be almost impossible for George. He didn’t want me to have unrealistic expectations only to be set up for disappointment. I argued that George had already started learning in large part due to our enjoyment of Super Why. He already knew his letters, but he was starting to put them together to form words.

“No”, said the doctor. “That’s scripting. He will never know what those words are outside of his experience with the show.”

As he continued, he tried to get my mom to help me understand and accept what his professional experience told me would be my reality.

“K-I-C-K kick, kick, KICK!”

The doctor was surprised as it was the first time he heard George speak. Writing it off as a fluke, he began condescending to me again: “I know this is hard. I know you had dreams for your child. But you need to accept that those will never be.”

“Q-U-A-C-K spells quack!”

“Yes, it does, George! Good job.”

Puzzled, the doctor finally asked what was happening.

“He’s reading the words you said he would never recognize outside of the show.”

The conversation didn’t go much beyond that. The appointment was ending anyway and he clearly “wasn’t getting through” to me, so there was little more to be said. He wished me luck and we left the office.

Every time George tells a joke, I think of the man who told me my son wouldn’t have a sense of humor. When he, albeit in his own way, makes a witty remark so obviously dripping in sarcasm, I remember when I was told he wouldn’t understand abstract concepts. When he brings me tissues and hugs as my heart overflows with the grief of my lost sister, I think of his supposed lack of empathy.

And, I laugh. Hard.

No ones knows his future. Not the range of his capabilities or the depths of his cognition. They don’t know the enormity of his compassion. They don’t know him. Simply put, they don’t know what he’ll do tomorrow that he couldn’t do today.

So, I’ll wait. I’ll sit here and expect that my child will be exactly who he was meant to be. I’ll remember that what he can do has always begun at the invisible line the ambiguous “they” said it would end. And, if he never does anything new again, I will still celebrate every breath, every moment, every tear and struggle, and even every meltdown forged in the flames of being perpetually underestimated and misunderstood.

Because many yesterdays ago, I almost had to mourn the loss of a child who would never get older. But he lived. So, I’m grateful for every today and I’ll look forward to each tomorrow. And, who knows what that day will bring.

There’s always tomorrow, friends. There’s always tomorrow.

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