|Christmas on the PICU Shelf|
Remember this time last year? Can you believe that it's been a year already? It's been a whole year since that terrifying two or three or three hundred weeks in the PICU. This time last year, we put up a tree just for the cat and the dog and christmas mice and the dust bunnies, because Christmas morning was just one morning in a parade of wretched mornings. My fellow bloggers are posting their pintrest quality christmases and traditions, decorations, and cookies; and all I can think about it is what Christmas is like when you are in the worst place a child could ever be. When Christmas Eve, instead of candlelight, warm hearths and toasty dinners, pretty much passes like any other PICU evening, with sickness and uncertainty.
This year, I wanted to dive into everything Christmas. I wanted it to happen this year and not just happen, but happen big! Stockings, lights, tree, the works! I wasn't going to skimp on anything. I wasn't that is, until we all got sick. It started with Nika, just like it did that time a year ago. It was just a flu like bug that time. We all got it, but Leo never got better from it, not like the rest of us. Days dragged by, with me convincing myself to just wait one more day, that tomorrow he will be better, on the up and up. But of course we know now that it wasn't going to happen and that I was in denial for too long. I say too long because by the time I brought him to the ER, on the strong urging from Leo's stellar Godmum, he was one very very sick baby. A quick recap for those new here and for those who forgot (no judgment if you did, you are lucky and I wish I could forget), Leo's shunt had malfunctioned over a long period of time and was draining into his lungs instead of his abdomen. In fact it flooded his lungs to the point where his right lung completely collapsed and his left was close to it. Part of the ordeal, indeed the very worst part of this ordeal is that for five long and terrible days we had no idea what was happening and why his lungs were filling up. Neurosurgery was adamant that his shunt was fine, PICU team was adamant that there was nothing else wrong with him that could lead to this situation. They checked him for everything under the sun. Poor guy was getting blood drawn from every limb, all the while draining gallons from his chest via tubes. I don't recommend getting sick during the holidays because things like labs and tests slow down if not stop all the way in the hospital. Leo's actual neurosurgeon was out of town, and I feel bad now for what must have been a barrage of emails and phone calls which descended on him during his vacation. Eventually they externalized the bottom end of his shunt which usually resides in his tummy, so in addition to the chest tube, he had another tube coming out of his belly, also draining fluid. The mystery continued until the results came back from fluid that was in his lungs which determined it as CSF (cerebral spinal fluid) and was proof that it was indeed the shunt that was going haywire. After this and that, and a couple freak outs by yours truly, (read about all that here) Leo got a new system put in which seemed to do the trick. Within a couple days the chest fluid slowed and stopped altogether and we were heading home, ready to put this whole nightmare behind us.
Put it behind us we did, after a fashion anyway. Until we all got sick, again, now, before Christmas and it all came pouring back; the fear and tension, and the loss of what should have been an epic Christmas for the kids. This time around, it was just a cold virus that blew through all of us and is on its way out. Leo is fine. More than fine he is perfect; everyday we are struck anew at his uniqueness- his open hearted character and his undiscriminating love. Christmas will happen to our family this year, God willing, but all I can think about are the children for whom it won't happen. I remember rubbing elbows with other moms and dads in the "gift room," the room in the hospital where due to generous donations, parents could "shop" for their sick child and siblings. There was even a wrapping station where you could wrap up and paste a bow on a toy or book, or two or three! I remember that the rule was that you could pick ten presents per child in your family. TEN! They weren't just for the sick kid you see, all the brothers and sisters too got presents curtsy of the hospital Santa. So that Christmas Eve, I found myself down there, with other parents in whose eyes I could see the hollowness that I felt in mine, the sadness of being there, but also the flickering contrast of gratitude to strangers who made at least a semblance of the holiday possible and real in that flat and unchanging environment.
Next week, there will be parents there again. Choosing and wrapping, for one short hour, forgetting about the fearsome reality of their child lying in a PICU bed.
For the past couple nights, Nika has been requesting Christmas carols on the stereo, and by sheer overwhelming bombardment of the music, I finally started hearing it. After years of emptily mouthing the words, I finally heard the point behind the melody and the poetry. The old classical carols are rich with beautiful imagery, but most of all, they tell the tale of hope. Christmas is all about hope and the birth of new life, the life that can and will save all of us. The promise of a beginning that will carry us through till the end finally comes. Last year, we felt a good dose of hopelessness, for five days we wandered in the desert of fear, until the light came back, and the candle of hope was rekindled. It is such a fragile flame, you see, and vulnerable to the slightest draft. Often the thoughtless wind which blows it out comes from our own hearts, but sometimes, it can come from outside, a person, or the environment in which we find ourselves. And more mysteriously, it can be rekindled from the same sources. Even though Leo was too sick to really appreciate the presents that I had carefully wrapped for him in the hospital basement last year, as many of the children in the PICU were, it didn't matter, because for that short moment hope came back.
|Christmas is happening on our mantle, in our new house this year.|
No matter where, no matter how, no matter what, Christmas brings with it hope.
I've been thinking a lot lately about the purpose of hope in our lives. This week I was selected to become part of the teaching parent faculty at our hospital. The program consists of specially selected families with children who have chronic health conditions. These parents, (and me now) carefully show and teach med students and resident doctors what reality really looks like with a child with a hard diagnosis. During my interview with the program coordinators which was geared to finding points and topics that would be valuable to teach, I realized that in our story with Leo, the underlying thread which follows weaving through in and out, is hope.
If there is one thing that I can teach those young doctors, it is to value and protect hope. To cherish it and gently carry it, never snuffing it out or destroying it for the sake of the medical "checklist." In every single hopeless situation, there is room and there is potential for hope no matter the outcome. It doesn't matter what will happen tomorrow or the next day, but it matters very much what will happen today. Parents who are sitting by their child's bedside need to know and feel that their suffering is not needless, and that it is not endless. To ignite the flame is easy, it can happen with one word, one smile, one look of affirmation. I will always remember the words of hope, as I do the ones of destruction, but as long as the balance is equal or more towards hope, I can continue to go on.
There was much darkness last year at this time. Every moment in the PICU was a grim eternity, but the moments that I remember where the ones of lightness. That moment I smiled to myself as I wrapped up Leo's new school bus, and knew that it would spark an answering smile in him. That time he ate four pieces of pizza at once, after not eating anything of substance for two weeks. The quiet moments when patience graced me with her presence and I lay next to him in the hospital bed and just breathed.