When Hope Comes
Lincoln woke with blood on his face, and seeing the red smeared on his cheeks, I froze a little, sucked in my breath, pushed away thoughts of terror. I don’t do well with blood. Cleaning his little face, scrubbing the dried red streaks from his cheeks and chin, I had to fight off an insistent round of nausea. He stood so still, in his blue and green pajamas, the top of his head just an inch or two taller than the height of the bathroom counter. So small and still in the early morning hours, like a little smudged statue being meticulously cleaned beneath the builder-grade vanity lights I have always meant to replace in our master bathroom.
Just a bloody nose, I reminded myself. People get these all the time.
I cleaned him and clucked over him and sent him out of the bathroom with the solemn responsibility of holding a wad of kleenex under his nose while I finished getting ready for work. Just a bloody nose. People get them all the time for no reason. Just, well, Lincoln has never gotten one before.
Lincoln has never woken with dried blood streaked across his face. And, in truth, I am a little gun shy right now, and everything seems like an omen. Every seemingly benign thing seems to hold some lurking danger, some unexposed threat just waiting to release itself.
Because the doctor says Lincoln is big and strong. Putting stethoscope to chest, the doctor says Lincoln’s lungs sound better than he’s ever heard them and everything is in order except for one tiny little detail, this pesky heart murmur that hasn’t quieted down as it was supposed to do. I’d like him to have another echo, the doctor says. Just to see what we’re looking at, he says.
And we understand because we speak doctor by now. We speak heart murmur, echocardiogram, patent ductus arteriosis. We are fluent in nebulizers and bilirubins and oxygen saturation and auditory brainstem response. Five years ago, we were blissfully unaware of the new language we would absorb quickly, being immersed in the culture of it, as they say is the only way to really learn these things. We learned the language of child-with-health-problems and its sister dialect, child-with-special-needs, the alphabet soup of ECIs, of STs, OTs, PTs, of IEPs and PPCDs.
So now we say things like, “I guess we better call his cardiologist,” and, “The last echo showed his PDA closing nicely.” Over the phone, my husband says, “Let’s sit down this week and hammer out a schedule for his trip to the ophthalmologist, the dentist, the cardiologist and his five year check-up.”
That's when the rest of it comes over me, the rest of what Lincoln's life has taught us. Beyond new lingo, beyond complex fears and an unsettling sense of foreboding, life with Lincoln has taught us that hope comes in the dark places. You can come to hope, always, willingly come to hope and drink deep no matter how much light has fallen on you. But, in the dark places, hope comes to you. Hope finds you when you cannot come to it, stands beside you in hospital rooms, swims to you in the murky recesses of poisonous thought, hunches beside you in moments of drunken despair.
You can release yourself to the fear and anger and pain, or you can release yourself to the hope.
When I think of a hole in my son's heart, I want to release myself to the fear. What if it didn't heal itself, like the doctors said it would? I want to release myself to the anger. We're going to have to think about heart surgery again, after four years of believing we'd dodged that bullet? I want to release myself to the pain of not being able to protect my son, not from nosebleeds or bullies or holes in his heart.
But instead, I release myself to hope. I release myself to the hope that waits for me in the darkness of my fear, unwinding my angst like a long, coiling receipt that documents every moment spent on worry. I lay my burden down, miles and miles and years and years of worry, like shedding an old skin.
I cannot promise that Linc's heart is healthy, but I believe it is. I look at his strong body, the way he runs and climbs and jumps right along with his brother. I remember the months when he did not seem this way, in the beginning when he was a pale, skinny newborn who refused to eat, who slept all day and night. I think of the doctor calling him big and strong this week, and I remember that Lincoln was given to us, not to any of the other 90% of people who would have terminated him in utero. I remember how far he's come, and I lean in hard to the hope that promises me how far he will go.