Different Worlds

When I got off the plane and discovered I was in Holland, not Italy, I also found I was in a world of people who had the strength to adapt, to change, to go with where they were and what was happening around them. Oh, and people who just couldn't deal with the lemons life had handed them; but I found the folks making lemonade far more interesting. And then I discovered there were people handed lemons who made wine (the good sparkling sweet stuff) and just let everybody wonder how they did it. Amazing people. And their parents.

Nik is about to be seven. So is Jack-Jack. I think about these little guys, as well as many other children of my readers, every single day. But these two of are interest right now, because it sometimes occurs to me that both of them are older than Andy. Not by much- a few months- but older. And I think of these little guys, and I think of my Andy, and I think, sometimes life ain't fair.

These three little guys are hard-working, courageous souls. Yet the challenges they face, so very different, just aren't fair. Nik is starting to say words, using his new iPad, working hard to learn to self-regulate and communicate. Every new skill is so hard-won. Every day is so hard-won. I check often with bated breath, lest I find he is in the hospital again, knowing how hard that little guy works, how hard his folks work to support and help him. Jack is able to scoot about, is learning to use signs and sounds to communicate, working hard to be able to understand his environment and how the world works. Every skill is hard-won, every day hard-won. Every time I talk to his mom, I prepare to hear he had a trip to the ER for a seizure, knowing how hard his folks work to support not only him, but his older brothers who are also seriously disabled. Both of these little guys are trying to hard to survive, while working so hard to thrive.

Folks who don't live with these families in their lives have no idea how hard these kids work. How much energy goes into getting to another day. It's not fair.

Andy's challenges are very different. His life is not on the line with every breath he takes. Yet he fights his own battles, ones that he shouldn't have to fight.

I awakened yesterday to a battle raging downstairs, screams of unhappiness rising up the stairwell. It was odd, they usually play together nicely in the morning now. I sprang up to intercede, and found the problem was about sticks. Joey is very fond of his sticks, which he uses for air writing, and has them about the house. Andy is also fond of sticks, which he uses as most children do: swords, guns, magic wands, whatever strikes his fancy. Apparently Joey wanted a long, thin stick Andy had, instead of the shorter (but still pretty long), thicker stick in his hand. He was screaming that Andy has stolen his stick. Andy was upset because he hadn't stolen the stick (for once), but it was one he had gotten from the yard the day before. In trying to be fair, there was little I could do other than inspect the stick and note that it was, indeed, the one Andy had fetched from the yard the day before- which, of course, settled nothing. Assuring Joey he could go out and get a similar stick was of no avail. Offering Joey another stick was useless. Joey's autism means he needs this stick, right now. Wrapping his brain around getting a similar stick was not working, especially with all the upheaval from the holiday. Meltdown was immanent.

Suddenly Andy looked down at the stick, and over at Joey, and at me, and held the stick out to Joey. "Let's trade, Doey," he offered. When this was amenable, Andy then reinforced the trade by noting the longer stick would write better, and the thicker stick made a better sword. But if you were there, you'd know that Andy did not want to trade sticks. He wanted his stick, but he knew. He could see the immanent meltdown as well as I could, heard the desperation in Joey's voice, the change of pitch that took it beyond a squabble. As long as it was a squabble, Andy held his ground. When it started turning into something else, he came up with a solution- one that got him all sorts of kisses and hugs and praise from his mom, who offered to get him another stick from the yard.

But it wasn't fair.