Then and Now …

It’s only been eight days, but Montana – and Heidi and I’s 10th anniversary trip – seems very distant. Time is slippage; this is no mystery, no great revelation, but despite our best efforts to mark its passage, to marvel at its speed, to hold onto its frail seconds, we can never gain control of it.

It’s nature most powerful force; a constant push forward with the entire weight of the universe behind it.

It leaves nothing unaffected; neither the physical, nor the mental, nor the spiritual can resist . Even modern technology isn’t fail safe. Record companies have found early digital masters from the 1990s are disappearing; the result of software and plug-ins that are no longer in use, that modern computers cannot decipher.

I was reminded of this when going through some old videos tonight of Beckett. This seems like yesterday – mere months ago, in my most mentally unprotected moments – and yet it was more than a half decade ago.

Beckett’s disease, itself, is no match for time. Lest you be confused this is some missive lamenting time itself, fear not. It’s nothing of the sort.

I was just using a bunch of fancy words to say: time flies.

Still, though, it is hard to believe that tomorrow will be our ninth day in the hospital. In those 9 days, Beckett has had a total of 15 minutes outside. He is as anxious as we are for the process to move forward; for him to get to the next hospital, to begin the intensive rehab, to move on with life.

I can say with certainty, though, that the past 9 days have been like no other in my, nor Heidi’s, nor Brody’s brief life. The days are mentally exhausting. I cannot recall a time when I have slept more deeply than in the days since Beckett began his upward trend. And I can certainly never recall experiencing fear like I knew Tuesday night into Wednesday morning.

There was a particular moment, early Wednesday morning, around 3 a.m., when Beckett’s blood oxygen level dipped to 79 percent. The P-ICU nurses came rushing in; and attached an oxygen tube to his nose. A minute after they left, Beckett woke up, realized the tube was in his nose and started to cry. It remains the only time he cried in the hospital.

I knew why, too. The last time he had seen a oxygen tube was when it was placed in his great grandmother’s nose, during her last stay in Tempe, a few weeks before she died.

He turned to me and asked: “Am I going to die?”

And, really, at that moment, I was asking myself the same question.

That’s fear: when you and your 6-year-old are wondering that very same thing; and neither of you are certain of the answer.

You can rest assured; I’ll never be able to call one of those days when you hit every red light; spill coffee on your shirt before an important meeting or get stuck with a work assignment at 4 p.m., a bad, or sucky, day. Suddenly, I have a new perspective.

Throughout this whole thing, too, we have been continually amazed by Brody, our daughter. She has soldiered on – through afternoons spent at friends houses, and near entire days in this 300 square foot hospital room. She’s been playful, and cheerful and kind.

The rotating shifts my wife and I have been doing; each of spending a night with each kid has been wonderful. It reminds us each, I think, how unique, and how much of a blessing each child is. Besides, I’ve gotten to watch almost all of season 1 of “Hannah Montana.” (… “Mix it all together and you know you’ve got the best of both worlds!”)

And I’ve shared some incredibly tender moments.

It’s sad that it took such a severe sickness to have a “pizza night” in bed with my son. The night before his sickness really took a turn for the worst; we ate pizza, played video games and watched a movie, together, in his hospital bed. Something tells me when I look back at my life, and the period of my life bookended by my son’s childhood, that night will come back as one of the classics – a moment I will always cherish.

Moms and dads – I highly recommend you book a “pizza, video games and movie in bed” night if you’ve got young ones who’d still go for that kind of thing. I’m thinking I might make it a regular feature in my house.

Anyhow, as I type this tonight, Beckett is fast asleep – breathing deep and rhythmic and steady. He had another excellent day of rehab. Today they made him put together a 30-piece puzzle. The kicker – the pieces were on the floor, and the puzzle had to be put together on a counter top. So he had to bend down for each piece and then stand up to place it in the puzzle. He walked some with his walker, and, as you can see below, is learning to master his wheelchair.

I’ve got hospital duty tonight with the boy; and rather than sleep on these awful couch bed things, I brought my own air mattress. I sense a good night of sleep ahead; but I’ve also got to take advantage of this time away from the wife.

She hates horror movies; doesn’t even like to hear them in the background at home. And with the kid asleep; a laptop computer; a solid internet connection; and streaming Netflix, I have the perfect opportunity to catch up on all that B-grade gore I’ve been missing.

There’s always a positive lining in everything.

Much love – Ed, Heidi, Beckett and Brody