To try and summarize Jed’s first year of life would exhaust a much more proficient writer than I. Any year that begins with “not expected to survive” and ends with stage three liver cancer is bound to be a tad incredible. This boy doesn’t believe in mediocrity, I’ll give him that much! I’ve been wracking my brain to think how to do justice to the time that began with me writing this letter to Jed before he was born, to where we stand now. And I totally give up. There is just no good way to explain how thousands of rides up the elevator to the eighth floor of a children’s hospital will profoundly change a person. Or how a little boy with impossibly fat cheeks who yells and grins and breaks every medical rule in the book can melt his way into hundreds of hearts. How a year ago, I thought bad lungs and kidney failure were as bad as bad could be, and never imagined in my wildest fears that worse could and would actually happen.
I thought, in my naive simplicity, that our story, the one that centered around a one pound preemie was pretty amazing. I mean, a seven and a half month hospital stay, a kid with a trach, a ventilator in my living room, neurological damage…that seemed plenty good enough to get the wow factor into a good story. We could have just stopped right there and our life would have been well beyond normal. Well beyond what most people could relate to. And then Jed happened, and I thought end stage renal disease and bad lungs and hearing loss and developmental delays were about as unbelievable as if we had completely made up the whole thing. Until one day I found myself signing off on chemotherapy treatments for stage three liver cancer in the very same little boy who had survived a theoretically un-survivable eleven months of life. Cancer. Really? How many times have I signed those papers anyway… for surgeries, procedures, blood transfusions, you name it. “Excuse me ma’am, I’m doctor so and so and I just have a few papers here for you to sign.” It is pure habit now. Signature, date, relationship to the patient. This time, with one flourish of the pen, I signed off on a battle of enormous proportions on every level. Telling our story, sharing Jed’s new fight…there it is, that statement, said or unsaid, it’s in people’s eyes. I’m so glad I’m not you.
Yup, you and I have both thought that plenty of times about people. Usually it’s on interstate such and such after you’ve been sitting in traffic for several eternities. When you finally pass the hold up, that poor soul that’s gone skidding into a ditch or some such catastrophe, when it’s finally your turn to take a peak and go on about your way…you think the same thing the other half million people who crawled passed also muttered to themselves. I’m so glad I’m not them. Oh we’ve all thought it, but some of us have a sunburned nose and a story to tell from our own personal experiences on the side of the road. And if we haven’t yet, we will. Because life has this funny way of getting a little untidy sometimes. For everyone.
After reluctantly detailing my youngest two’s medically history for some recent paperwork, the nurse quipped, “You must be some strong people to handle all that!” I’ve heard that probably six times in the last week alone, and you know what that sounds like in my ears? I’m so glad it’s on your plate, not mine. You must be something I’m not. I’m so glad I’m not you. I always feel like I should explain, contradict, set the story straight. Should I tell her that I hate hospitals? Should I tell her that hitting the cool dark interior of the parking garage is enough to make my stomach clench? Should I tell her how many times I’ve escaped to the bathroom to hide from what I couldn’t stand to see one more second? Should I tell her how lonely it is when the language of motherhood changes from what everyone else speaks to a language of diagnosis and charts and treatments and therapies and number watching? Should I tell her how the weight of an experience like this fragments far reaching areas of our lives and sometimes feels as if it will shatter us completely? Should I tell her I’m just like her, absolutely not better, and certainly not stronger?
So there’s us, on the side of the road, with a truckload of impossibilities. And I haven’t the first idea what on earth we are doing here. Except for one small part I do know. We are here because there’s a world full of people just like us, and those dear people need to know that God is a God who isn’t too big to sit on the side of the road with them. A friend made the remark the other day that children’s hospitals are not for the faint of heart. Nope! Nope they aren’t. Bald headed cancer kids, toddlers pushing IV poles, glassy eyed teenagers, and exhausted parents galore. Five minutes in a children’s hospital can break your heart right in two, and shame you into never complaining about anything ever again. No. My family isn’t the only ones hanging out on the side of the road. And this is just our side of the road, on the other side there’s the adult hospital filled with all the grown up versions of the same. And then there’s the nameless stranger in the grocery store and the coworker and the person who sits two seats over in church who all have a story of their own. I’m just going to leave all the theorizing of why bad things happen for a different time. Bad things happen, on that we can all agree. But from my roadside seat in the grass I have to wonder a thousand times…How does a lost world, a world who doesn’t know Jesus, how do they manage this stuff? Somebody else may call them “strong” and “inspirational” and “amazing”, but I’m not buying it. There’s no fooling one of us who’s right there with them slapping flies on the side of the road. We know better. When one is stranded, broken, upside down, and isolated…they need.
In those suffocating hospital rooms with the slick vinyl chairs, that lonely heart watching the time pass needs to feel that sweet steady presence of a Friend who needs no chatter or explanations or good behavior. That heart that has shattered one too many times doesn’t need trite sayings or platitudes, they need the Almighty to come wrap that broken heart right up in His love. That mind that is frantic with a storm of worry needs a God who can speak peace. That body that is flat exhausted needs to be carried by the everlasting, never tiring arms of God.
Jed’s first year of life is a wild story of a lot of battles won, some lost, a lot of laughs, a lot more tears, new friends, new places, and God. God, who daily continues to prove Himself faithful, good, strong, and more than happy to sit and scratch ant bites with us on the side of the road. I’m ok with that, because I’d rather be sitting here with Him, than without Him. Wouldn’t you say so?
Deuteronomy 33:27 The eternal God is thy refuge, and underneath are the everlasting arms: