Monday, March 16, 2009

Kids and ALS

I think sometimes we work too hard to shield children from the difficult circumstances of life. I don't personally think it's right to frighten children by initiating conversations they aren't curious about, or overwhelming them with so much information they are in tears of confusion. But I think we do them a disservice when we hide or whitewash the natural order of life.

During Bill's illness, the children in our neighborhood ranged in age from 3 to 18 with the majority falling between 8 and 13. Initially I was pretty nervous about answering the question "what's wrong with Mr. Bill?" Bill, God bless him, set me straight. "It's just like talking to adults, only just a little different. You need to listen more carefully, answer only the question they ask and use simple words". OK....great! As usual, he was right! Here's an example:

  • Q: Why is Mr. Bill in a wheelchair? A: His legs don't work so well anymore.

  • Q: Why? A: Because his brain can't talk to his legs to make them move.

  • Q: Does it hurt? A: Nope!

  • Q: Will he get better/walk again? A: No

  • Oh.

  • Q: Can I look at the laptop? A: Sure!

  • Q: What's he saying? A: Why don't you ask him. He can hear/understand you and he'll answer any question you ask!

  • OK!
Bill's laptop or "talkie" as we came to call it, was an endless source of fascination and information for the neighbor kids and their parents. In my experience, kids understand a lot more than we give them credit for and are very quick to adapt to changing circumstances, generally without intervention from adults! The kids naturally adjusted to the wheelchair and to Bill's funny, computer generated voice. It was the most natural thing in the world after we explained the basics. I will always be grateful to for the kid-friendly explanation posted on their website.

The kids figured out a rotating schedule among themselves to help me walk the dogs. Sometimes they would invite Bill to "walk" with them so they could ask their questions, knowing that Bill would answer honestly. I would often hear laughter, because that was his style and because a computerized voice is naturally funny!

Sometimes we would lose track of time and we'd have parents knocking on our door to collect their
kids for the evening. In the early days, they would be aghast at the questions asked (you know how direct children can be!) and try to "shush" the kids. Bill would quickly re-assure the children that he would answer the question, inform the parents that there were no issues and then set about to patiently and carefully answer all of their questions. He always answered honestly and in an age-appropriate manner. It was truly a wonder to watch.

One of my fondest memories is the day he actually died. It had been a full day and I had dinner with friends in Orinda. I came home and parked the van in the driveway. Most of the kids were out playing, enjoying the freedom of late night play that only comes in August when there is no school. They all ran to the driveway and when the ramp didn't drop, the older kids instinctively knew he was gone. Zack...a lively and curious 6 year old asked the question on everyone's lips...
Z: "Hey....where's Mr. Bill?"
K: "Well Zack, Mr. Bill is in heaven." (I knew I had a choice to tell the truth or paint a story. I chose the truth and will always be glad I did.)
Z: "Heaven....all dogs go to heaven" (long pause as he looked around at the older kids starting to tear up) "That was a really sad movie"
K: " are so right!"
Other kids: "Mrs. L., can we come in?"
K: "Sure, but you need to tell your folks where you are"

And that was that. About 10 minutes later, many of the neighbors came back to the house with their children to pay their respects and ease into their grief by reminiscing. As Zack's older sister Michaela came into the house, she spotted Bill's empty wheelchair, and without any hesitation, went to the chair and said her goodbyes to Bill by gently kissing the small bunch of silk daffodils anchored to the back. I'm sure she had no idea I was an observer to this fleeting, selfless, authentic gesture, but I will always remember her gentle manner and my gut reaction of "kids "get it" if we just give them a chance!"

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