A friend of ours who endured something similar to what we are facing now presented us with a brilliant piece of wisdom when she found out about Peter. “This is not a sprint,” she offered, “it’s a marathon.”
I am not a runner, but I thought I knew what she meant at that moment. We did our utmost to embrace the flurry of activity around us (Peter) at the onset of this ordeal, but I could see the time coming when it would simmer down. I knew that a little further down the path, there would be those moments when we would get frustrated, the kids would be sick or have a nightmare, Peter would just feel like crap, and one or all of us would entertain this idea: I just cannot keep going. Those are the times when true, meaningful relationships surface. Whether it is a family member who you knew you could count on all along, or a far away friend who unlocks long lost inside jokes and lobs them at you across the internet abyss, or someone with whom you haven’t had a conversation in 20 years still, for some reason unbeknownst to you, harbors affection for your adolescent self and the friendship shared so many moons ago, lucky for you (me). New cheerleaders also appear, showing you the right direction and giving you the hope to continue. When the fireworks have all been shot up, all of these are the people are there holding out Gatorade for you on the 19th mile.
There are also some incredible discoveries made when you have hit that place where you think you can’t possibly go any further. That strength that one musters up when you have nothing left, but then suddenly you find those last ounces of fortitude, because you know in your heart that your life is worth it.
This past weekend, we took the kids to an indoor water park. By the grace of God, and family loooove, Peter’s brother Paul, his wife Amy, and their three fantastic kids came with us for 2 of the 3 days. I’ll save you the play-by-play, but suffice it to say that I was, once again, duly impressed by Peter who, in the time during which he could/should have been laid out completely, got in the pool with the kids so that they could experience their Dad in a way that didn’t involve the everyday routines. With the twins, he was there to help them discover the joys of splashing your mom in the face and jumping off the side of the pool into your parent’s arms for the very first time. For Elijah, it was encouraging him as he gained confidence in an environment with which he has struggled most of his little life. Not a fan of big water, that one. But some serious progress was made!
Peter continued to push himself through the second day and into the evening. Again, he was able to be present in a way that he just hasn’t been able to for the last three months. Laughing, responding to all of the “watch me, Daddy” ‘s, letting go of reality for a few precious moments and embracing the sheer joys of normalcy. Maybe this is the 2nd, or 3rd, or 15th wind of the race, but it worked for a good while.
By the third day, Peter was totally whipped. We were given due warning about this phenomenon of fatigue, so he was ready for it. Still, he hit the wall like I have never seen him do before. A typically restless sleeper who regularly pops out of bed each morning, it took him far longer to rouse himself than ever before in our almost 11 years of marriage. He seemingly had nothing left. And yet, eventually, he did get up, eat breakfast, and shuffle to the park with the gang, book in hand. By the end he was laid out on a deck chair, eyes at 3/4 mast. But dagnabbit he was THERE. Occasionally he expressed disappointment that he couldn’t be more involved that day, but our angels where there to swoop in and carry all of us on their wings. We could not ask for a more devoted family, from the grown ups all the way down to the youngest kiddo. Each one pitched in to make our vacation a truly FUN time. There are not thanks enough for that kind of gift. This leg turned out to be a three-day relay.
Something is surprising, though, about this marathon. I had been thinking of it in terms of these past few months of Peter’s recovery and treatment. I suppose I had decided that the finish line (to over-tread the metaphor — oohh, sorry) was going to be right about now, as if completing this initial stretch would be the end of it. But as it winds down I am reminded, or I am learning, that the last three months of INSANITY? That was the sprint. The marathon is just beginning – the prolonged, indefinite treatment, the routine MRI’s every so often, the medication that will go on and on. And let us not forget the forever-more present and gnawing worry that maybe, just maybe, he’ll have to go through all of this again.
Somewhere in between all of that is LIFE. Splashing in the pool with the kids, beginning school next fall as the parent of a “grader,” shuttling between therapy services, doctor’s appointments, and court dates as we look toward the (legal) completion of our family. Dinner. Walks. Squirt guns in the back yard. This is the stuff that he is/we are fighting for. The luxury of choice in how to craft our experiences without a thought to where the nearest hospital is, or whether or not he might have another seizure. Luxury indeed.
The marathon is about to commence. It is the endurance of those of us who choose to celebrate minutia (and also let it go) that will help us pick ourselves up when we are in a place that feels not-doable. It is doable, with that drive, and some serious cheer leading (and maybe the occasional stretcher) from our supporters. We can and will do everything possible to make this time worth it. Otherwise, we’ll get run over by the stampede. Quite frankly, that is simply not an option.
