Little three-year old Howie died Friday morning of neuroblastoma. I stood in line at Anthropologie, trying to score a deal on Black Friday and get out of the hospital for a few hours. Out of habit, I pulled out my phone as I waited. There was Pam’s text, “Howie died.” I gasped out loud. The phone went black and I fumbled to see if it said what I thought I just read. Suspended in the swirl of shopping mania, the world seemed silent as I saw arms loaded with clothes and faces considering Christmas gifts. There on the hill, the world went black, went silent. Forever the cheer and celebrations of this season will be punctured through with ripping grief for that family. The fight is done. There is nothing more left to do. He is gone, gone. His eyes will never again light up. His sweet voice will never again utter, Mommy. His father will never again gather him up in his arms. The warmth of his neck is lost.
My mind apprehends the fact of his death, but my whole self struggles to take it in. His death declares the possibility of Allistaire’s death. They are no different from me. They are ordinary people who were suddenly thrust upon this path, just as we have been. I sit here in the same spot in Starbucks that I have countless times before. I recall that conversation a year and a half ago when Dr. Pollard said we could be done. We didn’t have to try more chemo. We could bring her home. Bring her home to die?! I could hardly breathe. I could not stop gasping, trying to get up to the surface for air. I felt myself going down into the dark waters.
Yesterday was Thanksgiving. It really was a lovely day. In our small room we enjoyed such pleasures as one another’s company, bright afternoon light, a football game and the incredible provision of an amazing Thanksgiving dinner. Julie and Jeff, whose son Zach died last January of AML after his third transplant, cooked us and two other families a feast complete with homemade ham, turkey, gravy, yams, mashed potatoes, green beans, pinto beans, spinach with bacon, cranberry sauce, butter, rolls, pumpkin pie and whip cream, pecan pie, cherry pie, apple pie and cupcakes. Out of their sorrow, on their first Thanksgiving without Zach, they cared for three families trapped inside the hospital as our three children fight against AML.
Allistaire was also blessed on Thanksgiving day with the gift of her 40th transfusion of red blood cells. On Sunday, she had her 27th transfusion of platelets. On the evening of her very first transfusion of red blood, on December 1, 2011, her hematocrit was 9. The doctor later said she would have lived 2-3 more days with a red blood level that low. That transfusion saved her life, just as each one since has given her the chance to persevere and fight against her swallowing cancer. So thank you to each of you who have given of your time and endured a wee bit of pain, to sustain Allistaire’s life, and those in grave need like her.
Thanksgiving marked her third day of her ANC (Absolute Neutrophil Count) hitting zero. It was also the second day of zero blasts. The blasts returned last week in low numbers (18, 10, 6, 18). We were so thankful on Wednesday when they finally hit zero. When that first day of 18 blasts showed up, I again felt that shaking terror, that suffocating clamp on my throat. Why God, why? Why do you have to do this? Why do you have to let terror strike again and again? Can’t you just give me a break? I barely felt settled in the hospital and back in this life when I was ruthlessly slammed up against the wall, with tip of knife pressed up against my throat. Will I believe God? Will I trust Him? Will I rest in Him? I’m up against the wall and my heart is pounding, my breath is strangled and the world tilts hard. Will I believe? Is God really good? Because man this doesn’t look good. There is nothing good about this. My whole view is flooded with brokenness.
Every time I wait for test results, every time bad news is delivered once again, I am given opportunity. The Word of God calls me to give thanks, regardless of the circumstances. How? What is there here in this mess to possibly give thanks for? The Lord offends by His command to give thanks when the whole world turns black, turns silent and death swallows. How do I possibly give thanks? Resisting thanks drives further still the question out of the corner of my eye, is He good? Am I actually some crazy lady brain washed to believe a whole load of crazy?
The waves pressing cold against my face and breath sputtered with swamping water. Down, cold, dark, arms flailing, chest straining, burning. Fighting for surface. Whole body fighting. The tipping point is near, the temptation to yield and slip silent into that cold deep dark where all thrash is done. Sometimes I don’t want to have to fight to see the Lord. Sometimes I weary and just wish for some way to walk away and never turn around. But what is there out there for me? The desolation of life outside of God is a complete aloneness. Sometimes the dullness of a simple life where eyes stay put on earthly plane appeals. Eat. Drink. Sleep. Work. Repeat. Fancy collection of elements that eventually gave rise to consciousness, but really it’s all just biology – love, hope, religion – just biology. That’s what I’m told. Every inclination of my heart is simply tied back to survival of the fittest. This love, this hope, this searching for God is merely impressive operations of a brain that innately yearns for the species to survive.
But I would have to will myself to blindness. Because when I look up and look out and look in, when I scan all that I perceive with finite eyes and mind, I see that there is so much more. There is SO much that defies my comprehension. I went and saw The Theory of Everything last week. It’s the true story of Stephen Hawking and his pursuit to understand time and it’s place in physics, in the universe. Sten and I saw Interstellar yesterday. It’s a wild movie about traveling through a worm whole, passing from our galaxy into another and the mysteries of black holes, mysteries that ignited the imagination and brilliance of Stephen Hawking. In talking with a fellow mom the other day, she mentioned the Higgs Boson Particle. Look it up. You will begin a journey that unveils a world where time bends and there are realms upon realms of reality that completely boggle the mind. We are SO small in the universe! Our minds so finite.
So when I feel the tip of that knife pressing up against my pale neck, threatening to burst through and rip out my life force, snarling to tear me apart, I look up. I look out. I fix my eyes on the Lord, my lifeline in these ragged waters. I place my hope in an infinite being who is beyond and outside of time – a being who makes audacious claims about what He has done and what He will do. I look at finite flesh and flower and sky and I see we humans who are absolutely discontent to live as though this is all there is and I am convinced that in as much as I can know anything, I know the Lord is there, orchestrating my days, ordaining the life and death of cells in Allistaire’s flesh. The Higgs Boson Particle is not mystery to God. It is His delight.
In Ann Voskamp’s book, 1000 Gifts, she gives a compelling case for us to give thanks. She challenges herself, and thus the reader, to be on the hunt for all of God’s gifts – all of them, and to name them and in so doing, to stake claim to them, to possess them more fully. She strives to not let life pass her by but to dwell fully in the present and soak up all the bounty that exists. But she dares to go further, she dares to take God at His word when He tells us to give thanks in all circumstances. Get down low, eyes wide, scanning, scanning – where is the gift? Where is the bounty in the sorrow, in the ripping times, in the dark, in the silence, when death swallows? I can never do her work justice in this short space, but if I might summarize her work by saying that in practicing the habit of giving thanks daily, hourly, moment by movement, we gain eyes able to see the bounty in the times that at first appear as only ravishings, as only loss and desolation. She refers to these brutal times, when we can still be on the look out for God’s good, as “seeing through to God places.” That is the point of giving thanks – giving thanks enables us to see God. And to see God is to have fullest of life, fullest of joy, fullest hope for fullest redemption. To strive to give thanks stops my view from being swamped by sorrow and gives me eyes of hope – hope that this right here, right now, this is not all there is. There is SO much more! The SO much more enables me to dwell fully in the present – I am more able to take in the whole view – not just a view saturated by death and disease and threat of loss and present loss – there are all these AND there is more. The loss is wrapped up within the fuller view of life in God.
I wish to leave you a few quotes from Ann’s book to give you a taste of her dare to give thanks at all times. God has used His work in her life and her words to spur me on, to give further evidence, to offer support to what I have seen Him do in my own life. She is my sister in Christ and I am humbled to have been so blessed by her yearning for Him and His faithfulness in her life.
“You murmur the question soundlessly. No one hears. Can there be a good God? A God who graces with good gifts when a crib lies empty through long nights, and bugs burrow through coffins? Where is God, really? How can He be good when babies die, and marriages implode, and dreams blow away, dust in the wind? Where is grace bestowed when cancer gnaws and loneliness aches and nameless places in us soundlessly die, break off without reason, erode away. Where hides this joy of the Lord, this God who fills the earth with good things, and how do I fully live when life is full of hurt? How do I wake up to joy and grace and beauty and all that is the fullest life when I must stay numb to losses and crushed dreams and all that empties me out?”
“Is this the toxic air of the world, this atmosphere we inhale, burning into our lungs, this No, God? No, God, we won’t take what You give. No, God, Your plans are a gutted, bleeding mess and I didn’t sign up for this and You really thought I’d go for this? No, God, this is ugly and this is a mess and can’t You get anything right and just haul all this pain out of here and I’ll take it from here, thanks. And God? Thanks for nothing.”
“And I moan that God has ripped away what I wanted. No, what I needed. Though I can hardly whisper it, I live as though He stole what I consider rightly mine; happiest children, marriage of unending bliss, long, content, death-defying days. I look in the mirror and am fearlessly blunt – what I have, who I am, where I am, how I am, what I’ve got – this simply isn’t enough. That forked tongue darts and daily I live the doubt, look at my reflection, and ask: Does God really love me? If He truly, deeply loves me, why does He withhold that which I believe will fully nourish me? Why do I live in this sense of rejection, of less than, of pain? Does He not want me to be happy?”
“I wonder if the rent in the canvas of our life backdrop, the losses that puncture our world, our own emptiness, might actually become the places to see. To see through to God. That that which tears open our souls, those holes that splatter our sight, may actually become the thin, open places to see through the mess of this place to the heart-aching beauty beyond. To Him. To the God whom we endlessly crave. But how? How do we choose to allow the holes to become seeing-through-to-God places? To more-God places? How do I give up resentment for gratitude, gnawing anger for spilling joy? Self-focus for God communion. To fully live – to live full of grace and joy and all that is beauty eternal. It is possible, wildly. I now see and testify. So this story – my story. A dare to live an emptier, fuller life.”
As for sweet Allistaire, she is doing relatively well. Our life circles around meals and sleep. Each meal seems to take about 2 hours of relentless effort to coach in bite after bite. She has to drink 44 oz of fluid a day to remain unhooked from her IV pole, which she has managed to do every day since coming off of chemo and IV Zofran (for nausea). Our goals are simple – protect against infection with baths, chlorhexidine wipes, ceaseless hand washing and Purell, keep her hydrated to help her kidneys and keep her weight up. Her ANC remains zero and she continues to get transfusions as needed in this time of decimated marrow. Today she will get another transfusion of platelets.
The saddest development has been that due to her being in contact isolation for VRE, she is not allowed to have any visitors under 10 years old, which has meant that now even her cousins are barred from visiting. I was so, so sad when the Infectious Disease doc came by to enforce the rule. The upside is that Solveig was here for five days and the two wild cat girlies had a great time together. It was hard to see Solveig leave this morning. It’s also been great having Sten here for the past week. He has stayed at the hospital each night and taken on the bulk of meal-time duties. It has been a great break for me. Sten’s folks watched Allistaire and Solveig stayed with my parents so Sten and I could have some time together. We are truly indebted to our parents for their faithful, generous love. Both sets of our parents have been unflagging in their support through this now three-year journey.
It is surreal to realize that it was three years ago, on December 1, 2011, that it first became clear that something was drastically wrong with Allistaire. I remember when she was diagnosed just a week later with AML, being told that she would have five hard rounds of chemo with most of that time spent in the hospital. We were utterly overwhelmed at the thought of going through that. Little did we know how much more would come. The Lord said to be expectant. I could not have guessed how He would move in my heart and be at work in our lives. I could never have chosen these three years and yet, given the chance, I don’t think I would ask to undo them. The good has been other-worldly, it counts for little in earthly currency, and yet it is an enduring good and an exponential bounty that is not yet done unfurling. Thank you Father. Thank you for these past three years, for all your abundant provision, tangible and intangible. I look ahead down the road and it is easy to fear what lies down that path. Some times I want to turn away. Rather, I dare to fix my eyes on you and give thanks, even as the knife threatens.
Here are a few videos of the little miss Allistaire. I needed Sten, my techy fellow, to help me remember how to put videos on the blog. The first is from last week, the second is from March 2012, the only round of Allistaire’s first treatment that she was able to come home for a few weeks. The next two are post transplant (summer 2013) when she was a huge chubster on steroids. The last one is from last night.
We have just finished “thanks”. We are in awe! Love.
I LOVE YOU with an everlasting Love, which flows out from the depths of eternity. Before you were born, I knew you. Ponder the awesome mystery of a Love that encompasses you from before birth to beyond the grave.
Jeremiah 31:3; Lamentations 3:22-26
I love you sister,
My Sweek Sister Jai,
I do not personally know you, but am a friend of a friend, and I have been following your family’s journey for awhile. I finally had to leave a comment and thank you for sharing your story and for being such an incredible witness! Two years ago, my family and I shared a Thanksgiving meal in the hospital with my Grandma (she watched me quite a bit when I was Allistaire’s age and she was instrumental in my walk with Jesus; she taught me to love him from the moment I entered this world). Grandma had just need diagnosed with terminal cook cancer. The heartbreak was completely shattering – but awesomely, mysteriously, wonderously, the provision and comfort in Christ/through Christ/from Christ was infinitely bigger. Your witness in your family’s time of struggle is SO powerful! Our God is SO powerful! I know there are so many of us hearing your story and we are finding encouragement and strength to keep holding fast (and in desperation) to our Loving Father! Praying for you all and sending my love! I am so incredibly thankful for you, for your sweet girls, for your family, and for your faith! And it gives me so much hope knowing that God loves you all better and more duly than we can even imagine! He is so good!
Allistaire, I think Lydia must be your biggest fan. She just giggled through all the videos and is demanding a second watching now! It is good to see you dance and giggle with Solveig and share your preschool song with us. I’m touched by your friends and their ministry of providing a holiday meal. What a blessing! We’re sending lots of love and smiles and thinking of you guys constantly. Praying you can keep seeing through to God in all the hard places.
Thank you for posting those videos–the one where Allistaire is eating breakfast and talking about school is so precious. She really is a little spark of life! Continuing to pray for your sweet girl and your family.
Jai, my name is Stephanie and I’m a friend of Lysen’s. I’m going to be at the hospital on Friday and would love to drop off a little something for you and Allistaire. You can text or email with the best time for you, otherwise I will leave it with your nurse to respect your privacy.
Prayers to you and your family!