Journey

When I watch epic adventure movies, (think The Hobbit, Harry Potter, Willow, Moana, Star Wars) there comes a moment in each story where I experience a sense of exhausted empathy with the protagonist. It goes like this: 

UGH. Can’t I just stay home?! My little inconsequential, mediocre life was great. WHY was I chosen for this journey? I am not special. I am not stronger than anyone else. Surely, if I choose to stay here someone else will take up the cause and probably do a better job. And then I imagine them curling up on the couch with a good book, some tea, and a fluffy blanket. 

This isn’t what they do though and at this point, a mixture of sorrow and resolve to do the right thing, despite wanting nothing more than to take a nap, washes over me. This is usually the point in the story where they leave their comfortable surroundings to embark on the adventure that will, on the one hand, save all of humanity, and on the other, make them unrecognizable to themselves by the end. 

I often feel this way about parenting Andrew. 

And please excuse the analogy. The point is not to draw a parallel between myself and the saviors of the planet. The point is that both feel like a hero’s journey. Both are lonely and exhausting. Both involve fantasies of giving up, passing the buck, hiding ones head in the sand, wishing things were “normal.” Both also invariably involve leaning in, risking it all, realizing you have no real choice, and leaving everything you know behind in the service of love and calling. 

98% of the time I’m leaning in. I focus on the delight that is Andrew, and trust me, that part isn’t hard. I go to all the appointments, read all the books and blogs. I pray. I dig deep to find the larger meaning of all of this, which is also not usually very difficult. And then every once in awhile, when I’m feeling brave, I crack the door open a smidge and look at what could have been. This is extremely painful. I do it though, because I believe it’s important to grieve. I also do it because the people who survive extreme conditions do two things differently than those who do not survive: one, they are brutally honest with themselves about how difficult their current situations are, and two, they never, ever lose sight of what they want and where they’re headed. That door is always there. It never disappears, though I hear over time, it may. This is what I see when I open it: Andrew is walking, talking, playing with Henry, blending in with his peers. He has one doctor appointment a year. Behind that door, I don’t have a pediatric neurologist on speed dial. He doesn’t have weekly PT, OT, SLP. I don’t have seizure meds in my purse. I don’t know how to administer rescue medication. Rich and I don’t have wills that stipulate custodial arrangements for adult Andrew when we die. No, instead, I see Rich and I gazing down at our three kids. Our plan worked, all is well, life is easy as we said it would be by this time. I see myself and Ellis finally being able to embark on our girl adventures. I see ease. I see a well lit path. 

After I’ve soaked it all in, I let my heart throb. Sometimes I cry, sometimes I just lay down and take the pain. Then I close the door and get back to it. It’s not good to dwell. It’s not good to deny. Somewhere in between is where I aim.