Episode V: The Empire Strikes Back

We all knew Darth Vader was Luke Skywalker’s father. We may have acted surprised, but deep down, we knew. As much as Luke might have hoped against it, he knew it to be true. It was destiny. And so it is with President Bush’s decision to veto vital stem cell research legislation passed by both the House and Senate. More than two-thirds of the country might have hoped against it, but deep down, they knew it was destined to happen.

Based on Bush’s track record, it came as no surprise. His stubborn inability to compromise (loved by some, loathed by many) made the announcement of his veto a mere formality. We had only to find out which of the few “saved” children he would parade in front of the cameras. Conspicuously missing from the spectacle were the millions of people suffering from disease. Or footage of frozen embryos being tossed into the garbage.

I became an inadvertent public advocate for the stem cell cause recently. A local news station came out to do a human interest story about us a few weeks ago. They asked me one question about stem cell research. Sure enough, they ran the story in conjunction with the Bush veto, wherein I had expressed frustration with current roadblocks. I never actually mentioned the administration. I didn’t think my comments would be used in a political sense. But I agree with the implication.

I’ve ranted about all this here before, but let me reiterate that I take the potential destruction of any life very seriously. Now more than ever. There are no easy solutions or answers. I am not advocating for the production of embryos for research. I don’t want life to be sacrificed for my own. But that isn’t what stem cell advocates are asking for. The intent of the bill passed by Congress is very explicit: to allow for the donation of existing, unused embryos resulting from in vitro fertilization which are slated to be otherwise destroyed.

I’ve come to see such an act as similar to organ donation. Knowing I was about to die, I would rather donate my heart to save someone’s life than have it put in a dumpster. I’d rather donate my body for research than have it frozen for eternity. Such gifts are made every single day. So who’s to say who is crossing a “moral boundary” here? The debate will undoubtedly continue, as it should. This type of boundary is so grey it’s charcoal.

Oddly enough I had recently started to forget about the promise of stem cells. The subject has been so over-hyped to those of us with illness that it’s become easier to ignore it. ALS is a nasty disease. It may turn out that no type of stem cell can help defeat it. But I am absolutely convinced stem cells will help save lives in the future. I’ve searched my feelings. Deep down, I know it to be true. It is our destiny.

Two Brains Passing

It’s official. My little baby girl is now a toddler. Eva has been walking for over 4 months. She rarely sits still for more than 10 seconds. From the moment she was born I have eagerly watched her grow, absolutely fascinated by the things she does every day. I can almost see the new connections forming in her brain as she conquers each new skill. Learning to rollover, sit up, crawl, walk. Grasp, point, open, close. Eat, smile, laugh, and cry. Ok, crying she had down right out of the gate.

By contrast, my physical abilities are slowly fading. A few months ago, when Eva was on the verge of walking, she would hold on to furniture for balance. As I stood watching her one day, I realized I was doing the same. Last year over the 4th of July, I went for a hike in the mountains of Colorado. I walked steadily with Eva in her infant carrier. This year I found myself stuck on a chaise lounge, unable to get up without a hoist from my in-laws. Eva chased birds in the yard. I watched from the deck.

Today, she motored about the house like the Energizer bunny, getting into everything, while I focused on each step to follow. Good thing I have long legs. But when Eva falls, she goes down quick on her butt. She gets right back up and keeps going. I have farther to fall, and getting up on my own is nearly impossible now.

Talking is Eva’s latest gig. She’s saying all kinds of things: mama, dada, grandma, grandpa, papa, flower, boo-boo, bubble, balloon, baby. Some names too: Amy, John, Robert (Scott is a bit more involved perhaps, and everyone butchers Kirsten). Her favorite word lately is “No.” As in response to “Eva, are you ready to go night-night?” We try hard not to laugh. I hope to continue my conversations with her for a long time. We’ll see.

Eva tests my ability to keep up every day. That’s a good thing. I need to stay active to keep my muscles in the best shape possible. She seems to be adapting well to my adaptive equipment though. She steals my cane from me sometimes. Then she’ll bring it back and hand it to me with a grin, as if to say, “It’s OK Daddy. You can do it.” She even helps push my new walker when we take a stroll down the block.

The most frustrating part of my day is not having the strength or energy to play with her as I’ve always imagined. But I do what I can. Without her, it would be easier to sit around and sink into depression. She gives me the motivation and the strength to keep going.

As her central nervous system grows and her abilities increase, a part of mine is dying. I often imagine that I’m transferring my mobility to her. If possible and necessary, I’d do it without hesitation. Instead, our brains are like two trains passing in the night. We are stuck on opposite tracks, steadily chugging along toward one another. We need to enjoy our time together as much as possible while we pass. I like to think her train is traveling faster than mine.