Friday, April 18, 2014

Why I Continue To Tell Jack's Story

Sometimes I get an email or a comment on one of my posts that says it like I never could. This, from reader Laura, is one of those.

"I worked with non-verbal, non-ambulatory adults before having my second trimester baby. They kindly taught me that I was an intellectual snob. If you'd asked me, "Do you think all people have value?" I would have said yes. But secretly, in that part of me I wasn't even aware existed, my actions showed that I believe people had to be smart enough, bright enough, fast enough, good enough. They had to have something that they were best at, and I was constantly measuring myself to see if I was "enough" of anything.

My adult special needs clients quickly became friends. And they weren't fast enough, smart enough, etc. enough at anything. But yet they were enough.

Now when people in my very brainy world (full of philosophers and academics) talk about what it is to be human, I think of these friends. If their definition does not include my friends, it is a false definition, because in so many ways these friends taught me how to be human better than my lofty education ever could.

I know that sounds ideal and romanticized, but the lessons I learned from them were ones that no textbook could have taught me.

The lessons I learned from them were the ones that allowed us to, without hesitating, say "yes, resuscitate our son, because if he can live - even if it's as a non-verbal and non-ambulatory person, if he can even have a chance at life, it is worth it."

And it has been so worth it."

This is my heart and is why I continue to tell Jack's story. Have a blessed Easter, friends.


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Tuesday, April 15, 2014

Wheel of Fortune

(Lucky you, a post by Jon!)

Jack has always had a certain kinship with the elderly. While many people see their medical needs skyrocket in their final years, Jack was a million dollar baby within his first few months. They are both early risers. Jack used a walker for a time when he was getting more mobile. His diet is somewhat similar to what you'd find in a nursing home (pureed, minus the Cheetos).

But the tie that binds them most closely is their mutual love of Wheel of Fortune. As a child of the 80's, I watched a little Wheel of Fortune myself. Over time, it did not rise to my top 100 things to watch on TV.  How many times can you watch someone win a trip to Sandals Resort, act happy when they win the car instead of the big cash prize in the bonus round, and see Vanna get yet another face lift? The commercials during the breaks are usually for Bengay or prunes. I probably went for a good 20 years without watching an episode all of the way through.

That was until Jack found Wheel of Fortune.


Due to some of his vision problems, he is drawn to movement and color. What could be better than turning a multi-colored wheel with dollar signs? Not to mention, every time a person correctly guesses a letter there is a nice "bing" sound and the letter space lights up. Pat Sajak's jokes may be a little lame, but Jack can tolerate them because of the bells and whistles associated with the show that has stayed mostly the same for more than 30 years.

I don't know how much longer Pat and Vanna can stay at it, but as long as they do, Jack will be watching with millions of loyal senior citizen viewers.
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Thursday, April 10, 2014

On Raising a Child Prodigy

"An attorney for a father and a PhD for a mother? Wow, your child must be brilliant! A prodigy. Does he play the piano?"

I kid you not, this conversation happened last week. I just smiled and chuckled.

How do I even respond to that?

What is it about humans that we all want people to fit in a box? So we can somehow place the people around us into neat and tidy descriptions? I know this person was attempting flattery, but I am over labels, especially when it comes to my son. So over someone's preconceived idea about what he should be. Labels do not make a person.

I come from a very egocentric profession. Above all else, intelligence and the ability to use logic to form persuasive arguments is valued. But that is not where my heart is. It's precisely because of Jack that I place my values on something else. I am not impressed by your incredible mind. I am impressed by your heart.

Is my child a prodigy? If you believe like I do, that your value comes from God and an extraordinary ability to love and inspire, then yes, of course he is.

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Wednesday, April 2, 2014

On Raising A "Productive Member of Society"

Friends, I often come across, shall I say, interesting viewpoints about children like Jack. I normally chalk it up to people being, well, people, and let it roll off my back. But every once in awhile, a comment or something written sticks with me. This is one of them.

"More money is desperately needed for cerebral palsy research because we need to be raising productive members of society."

At first glance: um... OK?

On second glance: um NOT OK.

We need to be raising productive members of society.

As opposed to what, I ask? As opposed to my son as he is right now? Are you saying he is a drain on society because of his inability to be "productive"?

How about we advocate for more research dollars because we don't want to see our children suffer? Or how about we advocate for more research dollars because we don't want another child's life cut short because of a debilitating disease? How about we advocate for more research dollars because IT IS THE RIGHT THING TO DO.

But raising productive members of society? What does this mean anyway? That our value as human beings is in how much we are able to produce? That unless we are contributing to economic growth, we are somehow less than? That every other person with sickness, disability, or an extra chromosome are a drain to the system?

Where is our sense of humanity when the only thing we will settle for is absolute perfection? I would argue that a society without a Jack is a society that is a whole lot less bright and meaningful.

Of course I want a cure for cerebral palsy, but it's not because I'm lamenting the fact that I can't raise a son that will go out and produce, produce, produce. My son is not a drain on any system. Quite the opposite, actually.

Can we see past the rhetoric to the humans behind the phrase? Trust me, being "productive" ain't all it's cracked up to be.
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