Annika will be leaving the PICU soon. We heard those words first from one of the transplant surgeons here, "So," he asked Sunday morning, "what is keeping Annika here in The Unit?" ("The Unit", aka Pediatric Intensive Care Unit). The more cautious of the doctors listed a few reasons to watch her closely, but mainly the question was met with smiles exchanged among the 8 doctors gathered outside her room.
And as we were readying ourselves to take our leave of this place, our long-time neighbor and PICU buddy, Matthew, was taking his leave, as well. But his departure was met with tears and that infinite sadness, almost too much to contemplate. It's that moment when you suddenly lose sight of your child in a crowd and your heart implodes at the same time that your entire body tingles with the feeling of loss, like a part of you that you absolutely cannot live without has suddenly disappeared. But then you twirl around, standing on your tiptoes for a better view, and you catch a glimpse of a familiar red jacket. And a few seconds later, with your child back beside you, you let out your breath and feel the dizziness in your head subside.
I try to imagine that feeling going on for hours, days, months, years, and wonder how our gentle and lovely friends will be able to keep moving. To go back to a life without their precious one, the boy they fought for and cared for and loved so fiercely not just these past few hard months, but every day of his four years with them.
A little over a month ago, after Annika had another bleed after the shunt surgery, back when she was clearly getting sicker by the day, she started showing signs of growing anxiety. We decided to insist that all medical talk be done outside her room, in order to avoid scaring her unnecessarily. But I always asked her, every day, if she had any questions about what was going on with her and her liver and all the hospital stuff. After all, I didn't want to keep Anni in the dark, but I wanted to be sure that the facts were given to her in a way that a 5-year-old mind could grasp.
On that day, a little over a month ago, when I asked her if she had any questions for me, she nodded her head and gave me an earnest look, "Am I going to die?"
The question, naturally, took me by surprise, even though I had been worrying about that very issue myself. Without even stopping to think about how best to formulate an answer, I blurted, "No! Of course not! You are not going to die for a very long time. You are sick now, but the doctors are going to make you better very soon and then we'll go home again."
I didn't say "The End," but it was there, anyway.
We called in the Child Life Specialist to give us ideas on easing Annika's anxiety and her growing unhappiness. I told her about Anni's question, and she replied a bit skeptically, "But does she really know what death
means?" And I had to admit that I couldn't be sure she did. But the concept has certainly concerned her for many months now, ever since Aunt Pat's death
, which she mourned in her confused way for weeks.
For much of that time, her mourning was that of a child, typically and innocently self-centered. So, for instance, she mourned the fact that Aunt Pat, a famously gifted storyteller, would never be able to share her stories with Anni. And she cried over all the Aunt Pat singing and telephone calls and visits that would now never be a part of Anni's life.
Just the week before Annika began the repeated bleeding that landed her in the PICU mid-November, and a few months after Aunt Pat's death, the girls and I were out in the front yard planting a new maple tree. It was fairly late for planting in the midwest, but I was encouraged by the unseasonably warm fall weather into purchasing the little tree at a bargain basement price, and hoping for the best. The girls, each with a plastic sandbox shovel, helped me dig a hole, loading the dirt into the wheelbarrow to use as backfill. Once we had the tree in the ground, we began refilling the hole until it was time to water gently to remove any air pockets.
Anni enthusiastically volunteered to go fill the water bucket from the hose, proud of her ability to turn the outside faucet on and off. She hurried off while I stayed by the tree with Frankie, trying my best to curb Frankie's apparently irrestible impulse to jump into the hole with the little tree and fondle its delicate roots.
Just a bit later, Annika ran back to me with her mouth pulled down unhappily and her eyes all shiny with tears.
"What is it?" I asked, concerned.
"It's a bird. And I think it might be dead. Or something."
She pulled my hand to lead me over by the wild rose bush that grows in front of the house, near the spigot attached to the front of the house.
Sure enough, there was one bird from the mourning dove pair with a nest near our house, the ones who spent the early morning hours of the summer cooing softly outside our windows. It lay there, right beside the brick front of our house, obviously dead.
After ascertaining that Annika had not touched the bird (fear of disease rules our lives, I admit), I asked her to take Frankie to the backyard while I took care of the bird.
Then Annika started to cry. "But now he won't get to fly around, or eat any more bird seed!" And just like that her sorrow shifted outside herself, as she realized that death also meant that the one who was gone would miss out on life, that sadness was not just about what Annika would miss.
So, although I still wasn't sure that Annika really
knew what "death" meant, I also knew that the same could be said of me. I did know that she grasped the consequences of death in heartbreaking simplicity.
Matthew had had so many close calls here at the hospital, and he pulled off amazing feats of strength and resilience. Even as the list of medical problems assaulting his little body grew in number and severity, there was still the feeling that he could pull it off. Somehow.
And, yet, eventually your rational mind knows that there are only so many assaults a body can take, no matter how strong the spirit and will. When I left Annika's room that morning for a cup of water, I saw the privacy divider up outside Matthew's room, and the crash cart parked outside his door. I knew then that Matthew was approaching that border, even before I saw the strained and exhausted face of his father in the hallway.
If love and devotion were enough, Matthew would be home playing with his baby sister by this time. His parents, Brad and Angela, kept a constant vigil at his bedside, reading him stories and massaging his legs, even after he was on the ventilator and fully sedated. Even as he lay unconscious, they spoke and read and comforted him. Their strength, kindness, and compassion held firm throughout their roughest times and deepest worries.
Just after Matthew's latest complication, I walked with Angela to the PICU waiting room, where her 2-year-old daughter, Lauren, was waiting for her, a meeting arranged back when Matthew was looking more stable, a meeting now so much more difficult because of Matthew's troubles. But despite the weight of awful worry practically pushing her shoulders down as she walked out of the PICU and into the waiting room, she opened her arms to Lauren unreservedly and closed her eyes into the embrace. Her mommy instincts undulled by the harrowing experience of the morning, she praised Lauren's bravery, giving her a love unshadowed by the fear we all knew she held.
I know that Brad and Angela will make it through this, and they will be back to Mommy and Daddy for Lauren, whose inevitable questions may be more difficult than any others. I know this, somehow. Although my heart aches with the thought of the days ahead, always missing Matthew and trying not to let their sadness weigh down the happy leaps Lauren still needs to make. I don't know how they will do it, but my respect for them tells me they will.
After Brad and Angela left the hospital today, arms empty and eyes red, I walked down the hall to the toilet. Passing their room, I saw the privacy divider had been taken down and the crash cart returned to its proper place. No codes were called for Matthew's last moments. He went wrapped in his parents' arms, quietly.
I'm glad we're leaving this place, now that Matthew's gone. Passing his room and seeing his bed, empty; it's heartbreaking. But the sight of someone else's child in that room, another parent keeping vigil, would be unbearable.
Of all the conversations I had with Angela over these past weeks, the most poignant one was the morning after Matthew had to be reintubated. He had spent a week off the ventilator, and hopes were high until the night before, when he coded and was put back on the vent. That morning, Angela told me with red-rimmed eyes about her fears, and how she had waited all that week to see him open his eyes and to hear him speak. "I was all ready to write down his first words off the ventilator," she told me. "I had my journal all ready. I didn't write down his first words when he was just a baby. I didn't write those words in a baby book, but I was so ready to record his first words this time... But he just didn't speak."
That conversation was about so much more than just first words. It was about the regret of opportunities missed, a regret that haunts all of us PICU parents. For myself, I regretted spending my one precious day back home from the hospital between Anni's bleeds decorating the girls' room upstairs, all by myself, in a misguided attempt to do something special for the girls. I should have been playing with them, and hugging them, in that time that I didn't know was to end so quickly. Because who cares about paint?
There's this country song (isn't there always a country song relevant to any sad conversation?) sung by, I believe, Tim McGraw. It's called something like, "Live Like You Were Dying." The song endorses a message that sounds reasonable enough: don't sweat the small stuff, and enjoy every moment of life. And I know that every parent can list things they would have done differently, if they were to be told that their time with their children would be short.
But, on the other hand, this song also pisses me off a bit. I mean, think about it. If we were to really take this song to heart, where would we end up? We would all head off to a beach somewhere to chill out and feel the sun on our faces and listen to the waves and just enjoy the moment, right? Then, a few weeks later, we would all look around at each other with our sunburned faces (because who wants to be bothered with sunscreen if you're living like you're dying?) and wonder where we were going to come up with food (because who feels like harvesting corn if you're living like you're dying) and head back to our dark homes (because who feels like showing up to work at the power plant if you're living like you're dying?). Hey, thanks Tim.
You just can't live life that way, not really.
So Angela and Brad will go home and pull out the pictures they've taken of Matthew, and remember his life with them. I hope Angela never again feels regret about something as small as a first word. Life is more than just a series of moments.
Annika was taken off the ventilator a week after Matthew went back on the vent. A few days later Angela stopped by, and saw Annika sitting up in bed with her eyes open. Lovely friend that Angela is, she cried with happiness to see Annika's eyes open again. But I know she was seeing what she wanted for herself more than anything else in the world, and we hugged and we hoped for Matthew, too.
Annika's first word off the ventilator was "More."
: the grasping of life with both hands.
: the very essence of grief.
If you'd like to send a card to Brad and Angela or make a memorial in Matthew's memory, the information will be posted on Matthew's web page
in the next few days.