The late afternoon yellow sun lights up the right side of my face as it lays horizontal across the land. It is the milky warm yellow of a winter afternoon. I keep having to remind myself that it is Christmas day. Nothing resembles any previous Christmas of my life. There is no giddiness, no anticipation, no biscuits, grits and tenderloin, just cold coming in from the open window of our bedroom and a silent house. Sten and I woke up alone in the house. The wind chimes were clanging outside with the joyous vigor of the wind storm that was upon us. With an empty fridge, we set out in search of somewhere open for breakfast. The leaves swirled everywhere-along the road and high up in the air making I-5 unrecognizable, as though it were a little traveled country road. We ended up in the lounge of a dark restaurant in order to avoid an even longer wait. Now we are back at the hospital with Allistaire napping in her room.
The light reminds me of that Friday afternoon just over two weeks ago. Unlike today when I drove to the hospital, on that day when I looked in the rear view mirror there were two little sweet faces, dancing and clapping in their car seats to one of our favorite songs-All God’s creatures got a place in the choir, some sing low, some sing high, some sing out loud on a telephone wire, some just clap their hands or paws, or anything they got now! The liquid yellow lit up the trees on the eastern hillside, the clouds soft whites and pinks, and if you looked straight up you could see the perfect singing blue sky. I turned up the volume on the stereo and repeated the song several times in affirmation that we were alive; a sort of defiance of the doctors words only two hours earlier telling me we needed to come to the hospital because they had found cancer cells in Allistaire’s bone marrow.
We went to the emergency room as instructed and were escorted directly to the SCCA unit and into our room. In the low-lit darkness of our shared room I saw a small girl of 7, head bald, dark purple rings around her eyes, hooked up to many tubes connected to green lights and machines. It was not long before I learned they had already been there for 17 weeks, since July and that they would not be done until March. I screamed inside, “I’m not ready God, I’m not ready for this, I’m not ready to hand her over.” We wondered why we had to be there given they only could do a few blood tests that night as the Cat Scan was not scheduled until the next morning. We were given a four hour pass to go home. We left at 6pm and had to return by 10pm. Four hours. When we got home I came in through the front door and sat on the carpet by the Christmas tree. Solveig and Allistaire came in and out of the room, playing with each other. I felt I could not move. I didn’t want to eat, I just wanted to keep sitting there, watching them, seeing Allistaire’s little figure moving around our house. I knew that when I moved my body from that spot we would be on to dinner and getting Solveig ready for bed and then, well then there was the unknown. I didn’t know when I would see Allistaire again in our house. The pictures above I took sitting there on the carpet, not wanting the progression of time. This was the extent of our family Christmas. Since that day the decorations have only felt mocking, not cheery.
Today we celebrate Christmas, the birth of Jesus Christ; the day the God of all creation became incarnate. The God of the heavens and the earth came down to dwell with us. Today did not feel like Christmas. All the sparkling glitter, the unnatural blue glow of LED lights, the cheery fat snowmen, the advent wreath and songs, the tree bedecked with ornaments, the absurd quanitites of cookies and treats all feel as though they belong to another world all together. In fact I feel done with them. I want to pack it all away. I’m over Christmas. But I have known the incarnation. There is the little nativity set that sits on the round table beside the couch every year. It can feel trite. But look there, that tiny little figure in the middle, that is the one that reminds me that God came down to dwell with man. When I drove the car to the hospital trying to focus my attention on the life that still perservered, when I walked in that room and wanted to turn around and run, when I sat on the floor by the tree unable and unwilling to move, each night as I pull out the chair and make it into my bed, each morning I select Allstaire’s clothes for the day and make the bed back into a chair, each lap around the unit, each time I walk in and out those automatic doors, each day I acclimate a little more to sickness and the possibility of death, each time I come home to our house alone He is beside me. It is not the sort of Christmas I wanted but it is the Christmas I have most know that I am not alone in this life; that there, just to the side of me is Jesus. These are hard words to write because they seem so insufficient, so dismissable. I have known the presence of Christ, not far off, but near. I’ll be honest, I’m tired now as it’s past 11 pm and I feel unable to begin to unpack the vastness, the weightiness, the wondrousness of the reality that I can make such a claim as to know that I am not alone, but am day after day in the actual company of Christ.
Here’s the update on the rest of our strange Christmas day. This morning marked the last chemotherapy Allistaire will have for her first round. On Friday, her ANC (Absolute Neutrophil Count) hit zero. This is exactly what the doctors would expect as the chemo takes effect. Her ANC can stay at zero for 1-2 weeks. Her red blood cells and platelets continue to drop as well. For this reason Allistaire had two transfusions of red blood cells this morning and her first transfusion of platelets. She was quite fussy and tired this afternoon and slept for a few hours. Because of the blood she received we expected she would be energized and in a chipper mood. However, even when she woke up she was still fussy and seemed warm. She was very uninterested in food today and only did a couple laps on the bike. Her blood pressure was a bit higher than normal and her temperature began to rise. Once this happens the nurses check it every five minutes or so. Eventually, her temperature reached the point to be considered a fever. The doctors are quick to address any possible illness. At the first sign of fever they take blood cultures, start an IV of antibiotics and give her Tylenol to reduce the fever. She was fairly unhappy this evening and wanted to held quite a bit. We put her down around 8:30 for the night.
Because Allistaire’s immune system is essentially non-existent at this time she is very suseptable to infection and illness. This evening was the first time she has actually acted sick. Please pray that God will protect her from harm and the doctors will be successful in determing what’s going on if anything and will know how best to treat it. This sort of situation is common and to be expected, but scary none-the-less and hard to see her feeling so crummy. Allistaire has such a generally cheerful spirit and it was clear today that she was not herself.
So sorry Jai… What a hard day. Praying that Allistaire feels better and that her temp goes down. Such an encouragement that Jesus is always with us. Hang in there girl… Thoughts and prayers are with you.
Leukemia and chemo is just BRUTAL…there’s no getting around it, especially on Christmas. I remember just wanting to skip Christmas. I’m sorry Allistaire is starting to feel yucky. It’s so hard to take it as a parent when your child’s quality of life is being affected. Your precious family has been on my mind and in my prayers.
Jai, thanks for letting me journey with you through some of your thoughts and your heart from 2 weeks ago & from today. What you describe about being over Christmas and knowing you are not alone is all so heavy & comforting and humbling to read and understand ( to the extent that i can).
Thank you for taking the time to capture poignant moments and building context around them, for us, the reader, to be able to try to understand the weight & burden that you’re casting on Jesus.
I’ll keep praying.
For Allistaire’s protection from sickness & her spirit/body to regain her cheery way.
I’ll also keep praying for your broken yet resolved heart to be soothed by the continued truth of Jesus’ presence & power & hope.
I love you.
Sam, sister, you are salve in my life. Thank you for your consistent encouragement. I miss your face but it is so good to hear your voice in your words over and over. Hope you had a wonderfilled Christmas!
Jai… you’re SO welcome. I do love how non existent face viewing can be supplemented with technology until such a time as God sees fit for our faces to behold each other! 🙂
And, thanks for the wonder filled Christmas wishes… it was filled… with lots of things about which I wondered, that’s for sure. I thought of you most of it. 🙂