If you have seven minutes, then close your eyes and listen to this song, if it can be called that – this landscape outlined and colored in sound: Jonsi Go Track 11
The notes begin, scattering, skimming, brightening, expanding, rising, growing, swelling. Light scattered, touching the nearest surfaces, skimming the edges of the land, the blade of Spanish Peaks pink as sun hits snow. Up, up, over, spilling down like liquid filling, spreading, expanding, plane after plane illuminated. Tree after tree lit up bright, light, growing, swelling. Dark, turning, turning, transcending, moving, rising up to Day. Like water racing down hill to fill every low spot, so the sunlight spreads its hands and fingers and touches, touches all darkness.
This is the eleventh track on the album and I could listen over and over as it speaks and sings and expands and stretches out, out, stretches so far that the surface of reality nearly tears from the thinness and the outline of eternity shows through. This is the music of my meditation these last months. My eyes take in the views of extravagant beauty all around me. Snow. Light. Mountain. Valley. Sky. Ever changing. Ever beautiful. My eyes swallow the sights and chew and masticate and salivate at their sumptuous beauty. And I take them in through eyes as ears listen to the notes that strain and stretch and they enfold my weighty sights. Sights that sag and hang and have girth and depth and dark.
For months I saw the blackness beside me. For months it’s gravity pulled and pulled and I pushed and pushed back just to stay upright; knowing at any moment, I could be cast down, it’s pull overcoming me. And then…in one small stroke, without blunt force, down into the very place I had so resisted.
The contours and expanses of the blackness, like one exploring a cave, keeps stretching and expanding. “What we know is that the statistics show that someone as high-risk as Allistaire, has no better of an outcome with one type of blood product over another.” “But what about GVHD” (Graft Versus Host Disease) I ask, “I mean she can die from that”?! The doctor’s literal response, “pick your poison.” Either Allistaire is at greater risk for relapse even after a transplant because her cancer can still come back or she will be at greater risk for complications from GVHD. Either way, she has the same shot at dying or living whether she has bone marrow from a donor or stem cells from cord blood. The 5-year survival rate is the same for both. Wait, why is she so high-risk? Is it because she has relapsed AML? Or is it worse because it came back in her skin? “Yes, both.”
Oh the ache. How do I describe it? All dreams tattered. Whether I think of the 19 year old girl in the room next door who, though she is still alive after 6 years of first getting cancer then a transplant, has already had double-hip replacement and needs two new knees in the next two years, or the girl in the wheelchair, a year out from transplant. What is this blackness? It is death. Ringing, stinging, biting reality that death may be sitting not far in front of us. How long? How can I know? A cold could come when her defenses are down and wring her breath and take her life. She could make it through transplant only to have her lungs or kidney’s fail months later as they did for Mario. Whatever images I had of my daughter’s life have been ripped; a tear that will not be mended in this life. Ovaries that will be burned by radiation. What was it that I just read the other day? “The total-body irradiation [for] the typical pre-bone marrow transplantation regimen [has] doses of 1,200 to 1,500 centigray…equivalent to being close to the epicenter of a nuclear bomb blast” These words are off of the Fred Hutchinson website – the one’s who have pioneered bone marrow transplants; a reliable source. Now those numbers are what they give an adult – but I’m sorry, do you think it’ll be much better for a little one? What of that big lead slab that stands in the hallway – the one the nurses and doctors stand on one side while the patient stands on the other? What are they doing to her that they need that?
This is the blackness I watched out of the corner of my eye all these months. Either death or a ravaged body. This is what my child gets. These are the outcomes. There are no more good outcomes and it hurts and hurts and aches and sears. The guy, David, at Starbucks tells me about his next bassoon concert in mid-May. “Oh, but you won’t be here by then,” he says matter-a-factly. “Unless my child doesn’t make it, I will,” I respond. Wow, the look on his face as though I can’t or perhaps I shouldn’t say things like that. “Hey,” I say, “if I get to be here as long as the docs say we could, than we’ve had it good.” His face contorts and he weakly says, “I guess so.” I will not pretend. I will not hide. I will not back away. I will stand and I will look that death in the eye and I will say I see you and I will stand. I know the stakes and I will not prance around that word and pretend that it is “disease,” when this is death that is staring back at me. I will stand and face that black and I will call it what it is and I will call out the death in a crippled life. I will face it and I will name it.
But. Death is not the end. Death is not an impenetrable wall. Death is not the end. Black and dark are not the last color. So as tears ran down my face and I swiped them away over and over, the Spirit of God reminded me, and the corners of my mouth turned upward and light sparked in my eyes. His ways are not our ways. No, the well-worn paths of this life are very possibly closed off to my child. Her life quantitatively may look different from this life we think we so want for our children, because it is the life we have sought for ourselves. Yes, her body may be crippled by this. It may limit her and barricade her from roads she may want to take. But then, redemption. But then, the ugly-beautiful. But then, I remembered the Lord, who with giddy delight raises the dead to life, who makes darkness, light and soiled become pure. This is the God who is over all. This is the God who hovered over the surface of the yet unformed earth and brought life and bounty and beauty. This is the God who is not limited, the in-finite God, the not-finite God. He scoffs at death for He has overcome it!
How many times has He told me? “Lift your eyes, Jai.” Lift your eyes. What will He do that I cannot yet see? What is He up to that my mind cannot conceive? I think of the crippled, broken bodies I know. And some of these bodies house the most wondrous spirits our world has known. Like the blind whose sense of hearing excels those whose eyes see, so perhaps a broken body allows the spirit to swell and expand and be less constrained by flesh, because it must – it will either atrophy or burst forth. And should death take her, should her life be cut short – what then? Will her spirit not even more so burst forth and know no more constraint? Will she not walk with head held high with joy and no more suffering or tears or pain?
I do see death. Every time I rub Allistaire’s back I am confronted with that wretched bulge on her back that is the tangible evidence of this disease that will end in death if it cannot be stopped. When I wrapped Allistaire’s birthday present, I wondered if I would ever wrap presents for her birthday again. Is this the last time I fold the paper round and press the tape down? As they wheeled Benton out, his pain finally under enough control to go home to end his days, I had to ask myself the question of where I would want Allistaire to die if it came to that – at home or in the hospital. These are the questions that so quickly and easily invade my day.
I feel the cut and the burn and the sting. I choose not to turn away. I choose not to shield my eyes. I choose to hear and let the words settle on my heart. Why? I cannot say exactly. But somehow it seems better to me, for me, to stand facing that biting cold wind that blasts my face and eyes. This is life. I want to know it. I want to feel it. I want to live – every bit of life. Is this not the very life that so many on the planet face every day? Who am I in my first world comfort to sip my Starbucks and avert my eyes? This is as much part of what it is to be human as it was to bring Allistaire into this life – to feel her tiny body moving inside mine and to usher her out into this broken world. I have known this child from conception and I will walk all these days with her and I will choose to have eyes to see the death and eyes that see the beauty and life that stand side by side. I do this for her. I do this for me. I do this so that I might have a shot at loving better those who have known similar darkness. I do this because I am determined to pursue my God who has not stopped pursuing me. My jaw is set and I will not be swayed. “He is our portion and we are His prize.” I want to know the fullness of those wild words.
A couple months ago I sat on Allistaire’s bedroom floor, the expanse of blues and greens spreading out to fill the entire wall. There I sat lazily gazing at the wall-size 1972-world map original to the house. My eyes swept back and forth across the continents and without meaning to, I found I was enjoying seeing how one land mass fit so nicely, snuggled up against another despite an ocean dividing a vast distance in between. I smiled as I considered the east coast of South America and the west coast of the African continent. I wondered how wild a theory Pangaea must have sounded 500 years ago, 1,000 years ago. Absurdity. Ridiculous. Impossible. Now we still don’t have proof but as one stands back and sees the whole earth in one view, it does not seem so absurd. It all seems to make sense.
I was talking with someone at the hospital the other day, who said that she has seen enough of pain and hurt and death that when she gets to heaven she will demand some answers. Naw, I don’t think so. I think the first unfiltered glimpse of the glory of God, who sees all and knows all and determines all, will simply silence us. We will know the absurdity of demanding answers. We will taste and see that the Lord is good.
I have been praying for you and your family daily. I wish I knew what to say but I just want you to know that I am praying for you.
I so appreciate your honesty, even as it guts me for the sweet girl I barely know, but whom I love all the same. I am praying miracles for her. Sharing where you are, where God is leading you, what He is teaching you – I love your heart. I love your boldness. I love you.
Oh Jai… My heart groans. I long for and pray for Christ’s return… To come face to face with our masterful Maker, to be caught up the radiance of His glory, to have no response well up in us other than to fall to our knees and worship…
Love you ever so much and am encouraged and grounded by your words and Christ’s strength in you. Cannot wait to see you both in a few short days dear sister 🙂
Absolutely hard, beautiful words. I love you boldness, your wild devotion to a God that you know is true and good and tangible. Thank you for being so brave with your words. Praying hard here and now.
If we live, we live to the Lord; and if we die, we die to the Lord. So, whether we live or die, we belong to the Lord.
We are forever and always His. What a beautiful, beloved crux that is. This very blood running through our veins pumps a heart that has and always been our Heavenly Father’s.
My momma heart hurts. I cannot fathom facing death, I am praising Jesus for his faithfulness and praying for you, sten and the girls. Love.
Fighting the enemy death is the right and natural thing to do…your words of our battle against the last enemy death, are what we all feel as we see children like Allistaire in the struggle for her very life! 10 years ago (3-9) my daughter Laura chose to leave this life. Though she was trying to trust God, she gave in to the battle that was waging war in her mind. I find strength in reading your words Jai…you are fighting for Allistaire. We know God is in control, but Allistaire is so BLESSED to have a Mom/parents like you alongside her! Keeping you close in prayer, Carol Sanford
“Trust Him when dark doubts assail thee,
Trust Him when they strength is small,
Trust Him when to simply trust Him,
Seems the hardest thing of all.
Trust Him! He is ever faithful;
Trust Him – for His will is best;
Trust Him – for the heart of Jesus
Is the only place of rest.
Trust Him, then, through cloud or sunshine,
All thy cares upon Him cast;
Till the storm of life is over,
And the trusting days are past.”
-Trust Him When Thy Wants are Many, Lucy A. Bennett (1850-1927)
How many times I must have thought the same things before Mason’s transplant. The worry, the unknown. What could happen, what might happen, and how could I be certain this was going to work? I couldn’t. I prayed to God that he made it through knowing full well that his plan may not be the same as mine but that he knows what he is doing. My heart ached then and it aches now for you. To embrace the feelings and to surrender to Him is the only way. He has this. He has you and Allistaire. Please, call anytime! Would love to see you and meet for coffee. I know how much it meaned to me when you were there for me and please know that I am here for you too. Whatever you may need. Much love to you!
My mommy’s heart is breaking and aching for you, sweet Jai. Thank you for your amazing heart, your honest words, your unfailing trust and faith in God. I’m praying for Allistaire and for all of you. Hugs and love.
The angel of the LORD encamps around those who fear him,
and he delivers them.
Taste and see that the LORD is good;
blessed is the man who takes refuge in him.
Oh Jai…thank you for glimpse into your gut-wrenching pain. May we somehow bare a tiny piece of your heaviness. Please know that my heart is breaking for you and my love is with you, your sweet girls and your husband as you walk down this grievous, unknown path, hand-in-hand with your Saviour.
“Spirit lead me where my trust is without borders.
Let me walk upon the waters
Wherever you would call me.
Take me deeper than my feet could ever wander
And my faith will be made stronger
In the presence of my Savior…”
Hillsong UNITED Oceans (Where Feet May Fail) Lyric Video
Bless you, Jen
Try letter school and word a licious for apps Ellen and Lillian love these two.