Rainbows and Unicorns, Surfing, My Baby.Posted: March 13, 2013
The roller coaster has been strong lately. I’m on an every other day cycle. One day I’m pretty happy, LP seems to be doing well, I’m thinking about the days when I was so sad, past tense. I call that a rainbows-and-unicorn day.
The next day, I’ve been told that LP likely has severe sleep apnea, or possibly autoimmune related thyroid dysfunction, or aspiration that might lead to pneumonia… yeah. It is still possible that LP will not have a single one of these things. It is also possible (but unlikely) that LP will have all of these things. That, friends, makes a mama tired. Not sleep deprived tired (although my obsessive internet research gives me some of that variety of tired as well), but the other kind of tired. Tired in the heart. Tired of thinking another sad, scary thought about my baby’s health or future. Tired of digging my way out of that sad, scary thought. Tired of thinking about how long it has been since I had pondered said sad, scary thought.
When we first were thinking LP had Down Syndrome, I had a friend going through some very hard events in her life as well. We met one day and went to the beach together, she told me what had happened to her, and I told her about LP. We sat, watching surfers float on the Pacific Ocean, cried together, and wondered what our futures held. I watched those surfers carefully that day, all at once so powerful and in control, but also completely beholden to the water. I watched as some tried to catch their waves too early, too late, the wrong angle, resulting in their boards slipping from under them like a thin piece of paper, scuttling in the wind. But if they did it just right, the energy of the ocean’s edge would push them along, their boards sliced along, careening the surfers’ bodies through a tunnel of water.
I’ve never learned to surf, but I’ve always been drawn to it. I like the dichotomy of surfing. You need the strength to control your board, tame its path through the water. Yet, resisting the path laid out by the water is probably futile, so you use your strength to navigate what is already there, listening and feeling for where the water wants to take you, when it wants to take you.
I’m trying to surf my life a little better. To be honest, before LP was born, I was in a murky place in life. I was a grumpy woman. I found fault in too many details of my life. While I couldn’t put words to it then, I felt I wasn’t giving Mouse and Chipmunk the mother they needed. Looking back, I think I’d let life get just a little too precious in my head, started to think that I could bend life’s waves to my liking. And that was just… well, I’ve never seen anyone succeed at that.
When I say that learning my infant son has Down Syndrome has actually been a more positive than negative experience, I get a lot of silence. In the beginning, I remember going onto online forums and reading things like “I would never change a thing” and I thought it all sounded crazy as all get-out. Why the hell were these people saying this? Maybe they were just shining up an awful, unchangeable situation.
But here’s the thing… I’m pretty sure they’re right. I can’t change the waves; I can only ride them. And yes, the practice of surrendering oneself to life’s mysterious twists seems impossibly hard. We move through life trying to bear witness to a greater virtue and grace than perhaps we can actually fathom. And that movement, getting up on that board, wherever it leads, takes strength. I know in my heart that this wave was meant for me. I’ve seen more of life’s beauty than its harshness. I have met awe-inspiring people. I’ve understood a deeper sense of acceptance for all human beings.
But… I’m still tired.
Maybe I’m struggling too hard in my mind. Maybe I need to go back to my fishing/beach bum thinking… but that seemed a lot more passive than the medical ups and downs we are going through now. I guess I’m thinking that getting up on that board and riding your wave is less tiring and more exhilarating than getting caught in the undertow. It is hard to know which one I’m doing sometimes.
I took all three taters to the beach today. LP took a nap and seemed just fine with it all, waves or no waves.