I was watching a movie…a man trudging through the snow, days and days, months of journeying, comes to the top of a ridge. Out before him unfolds an expanse of evergreen covered hills and mountains with snow, clouds settled in the low lands like a thin veil of blue. Everything in my heart heaved one groaned word, “home.” Oh the longing to go home, it pulls deep. The longing to at long last lay down the battle, to be at rest, to no longer strain, to be in the presence of those who love you, to feel safe, to cease the striving, to release, for all to be as it should be.

I hardly knew it was Easter. I mean the stores made it clear that it was somewhere on the horizon, but suddenly it was upon me, Sunday was coming. And I push aside all the eggs and the bunnies and candy and chicks like so much underbrush, hacking with machete to get where I’m going, to get home. To find rest. How timely that it is Easter for I am in ever so much need of rest. I weary. My heart faints. My face throbs from pain at the relentless tears. My voice feeble, oh Father how I long, long to curl up beside you, to have your mighty arm encircle me. I long for you, for that rest that Easter makes possible. And you stretch out your hand to me and invite me into that rest now. Come now, enter in, abide in Me as I abide in you.

We are in the garden and the serpent seeks to whisper disbelief, to suggest You Father are not really so good, are not really so kind, but cruel, a depriver of what I really need. And I see you there my Jesus, agonizing over what the Father has asked of You, asking if there be another way, oh let this cup pass, let it pass God! And when the answer comes, that No, No this is the only way, You yield. You say Yes to the Father and you lay down Your life. Your greatest work was to rest, rest in the Father, yield to Him.

Oh Christ, our great High Priest, our compassionate intercessor, hold up my heart. Enable me by your Spirit to yield, to yield, to say Yes Lord, Yes, You are good and I will trust in You, I will rest in Your holiness. I will take Your hand and follow wherever You will lead, even if into blackest of night. I lay down my life and it truly feels as if my lifeblood flows out. I am faint, so weak. But will I love as You have loved? Will I lay down my life, my vision for what my days on this earth were to look like, will I say Yes to whatever you deem best to love others?  Oh Father, you see them, you see those dear to me there…across the cavern, I hear their voices as though muddled through water or glass, I reach out but they are too far, so, so far. Will I say Yes Lord, she is Yours, and Yours to take? Am I willing to cross over into that dark, into that wilderness, that wasteland? I have always known this, the stark truth of it always, always looming in the periphery…You call some of Your children to go all the way down that dark road. You draw them into the black. Because only there can You demonstrate, not in word, but in reality, that I will find You in that darkness and You are the God that turns darkness into light.

Lord, I am far too small to say what is right, what is best. I know only that my whole heart longs for You. And I do say Yes to You, I will take Your hand and walk into the black because ultimately I do not despair. I know what happened, what we remember on Easter, I know You said Yes to the Father, You yielded to the Father and You were crucified for it. You were put to death and swallowed into the black. And yet, You rose, You overcame the power of sin and death and the tomb was empty and everything about those three days has everything to do with this day, and all the brutal days behind and the ones to come.

Hear my cry to You oh my God! Many recoil at this faith they find so absurd, so utterly foolish, so offensive. I know only that I love You my God. I have tasted of You and I can never walk away. Hold me tight. Gouge out my heart if You must, but Spirit, teach me the truth of these words of Jesus, “If any man will come after me, let him deny himself, and take up his cross, and follow me. For whosoever will save his life shall lose it; and whosoever will lose his life for my sake shall find it.” You are my hope, my home. You are my resting place, my Sabbath rest. It is only in You and through You that I have life and all will be made right. It is only because of You I have any hope of a gentle and quiet spirit, a spirit gentle and kind because I have been forgiven so much and a spirit quiet because in You it is finished, You sit at the Father’s right hand. All Your promises are Yes, and Your will be done on earth as it is in heaven.

I thought this afternoon I would sit down to write of nine tests showing no evidence of cancer in Allistaire, for in all nine I had word that every attempt to find her leukemia came up with nothing. A brain MRI, a PET/CT, a LP (Lumbar Puncture), ultrasound, peripheral blood chimerism and whole marrow chimerism, flow cytometry, pathology and cytogenetics – one by one the results trickled in over the course of a week. I would not claim victory until every last one came through. And even then, when my sister-in-law asked me if I was excited, I said No. No. We have had clear results before and the cancer has always been there, ever lurking, ever seeking to devour and destroy. I am thankful, of course. I am glad. I can breathe a bit easier, but at any moment, any moment, it could all change again.

I had hoped this transplant would at least give Allistaire time. Time. Time for what? Time for research to catch up with the complexity of these cancer cells that seem ever able to evade, time to design a full-proof weapon, time to make it down the road far enough for some new therapy to intervene before she be swallowed alive by this beast. I had started to dare look down the road, to think about the actual possibility of going home. Maybe she would be alright. Maybe it would actually make sense that I was teaching her to read. Maybe she would live long enough for literacy to matter. She said in the car this morning on the way to clinic, “I wonder if I’ll have babies.” Pain squeezed around my heart. “You probably won’t be able to have babies, sweet girl.” “Why not?” came the sweet voice from the back of the car. “The part of you that makes babies was too badly hurt by your chemo. But you could probably adopt babies.” Her face lit up. She liked the idea of that. And I told her, that if she lived long enough to be old enough to be a mom, that would be amazing enough, she would probably be okay with not being able to grow babies in her own body.

Our schedule only required we come in for her second set of labs for the week. We sat on the bench just beyond the elevators there on the 6th Floor at SCCA, the Bone Marrow Transplant floor. We had checked in and were settling into the wait and to begin our breakfast when Erin the P.A. said that Dr. Burrows wanted to talk to me about her PET/CT results. Instant panic. Instant terror, a swallowing, the world turning black, cold down the neck, drowning, it’s coming, it’s coming, I know what’s coming, I’m going down and like that every hope was snapped off like a dry twig.

We were taken to the conference room and I handed Allistaire my phone with the sound turned off, and she turned to Toca Boca Hair Salon and proceeded to spray the girl’s hair pink and purple and green. And Dr. Burrows came in and looked at my face and asked how I was and I stood there with a great blade struck through my torso, the blood already staining my shirt and the beads of sweat on my forehead and the color gone from my face. And she went onto explain that the while the brain MRI had originally been read as everything being clear, because the PET/CT showed an area of FDG brightness of 4.0 (normal being 3.0 or lower) in the exact area that her chloromas had been, this prompted a second group review of her past and present scans. In short, there are changes in the tissues in her right sinuses, changes that may be because of her significant cold, due to the human metapneumovirus which has yielded phenomenal amounts of snot for the past month, or it could be disease. It could be leukemia. There is no definitive way to tell at this point. We’ll have to rescan in a month. We’ll look again when her cold has cleared and the tissues in her sinuses have had time to return to normal if it really is only the impact of this virus.

Yesterday I woke several times in the night. Ava. Ava. Ava was always there. Immediately. Her name was the first thought formed, resounding, pounding. Then next there was Esther, her mom, my friend, my sister in Christ. Esther. My friend flailing in the water, struggling to catch her breath as the relentless waves threaten to swamp her. And we’ve been texting and she tells me it looks like the tumors are coming back and she cries out into the black, looking for a way through the thick dark, looking for a ray of light to get her daughter through to the other side of this cancer, this ravager of her flesh. And I have no life line for Ava’s flesh and I pray to God that He would work through Dr. Cooper. But to Esther I speak our Father’s promises, I ask His Spirit to speak His words of encouragement, of peace, courage my sister, courage! The very same power that the Spirit exerted to raise Christ from the dead is at work in us!  If even the worst comes to us, our Father will carry us, bind up our wounds.

It is strange to dwell in two worlds, to have your heart so firmly planted in both, the temporal and the eternal.  We’re sitting on the $40 Ikea rug putting together her Elves Lego set she got for her birthday.  I love to watch Allistaire’s face.  To catch the light skimming across the delicate peach fuzz of her deliciously adorable cheek, the perfect little swoop of her nose, her long thick lashes growing back in, the delight in her eyes as she tells me a story, the movement of her lips with voice just so sweet.  I watch her two small hands struggle to get the Lego pieces to fit together just right.  To know her is to know a hundred-thousand million delights.  The thought of losing her, of having her absence an ever-present ache and sting, oh how can we bear up under such sorrow?  How can some stupid little cells take that all away?  Is there really, really nothing we can do to get rid of them?  I think of the life we could have had.  Six years old and what has her life looked like?  And who might she be in the world if she just had a chance to live?

Today is Good Friday, a name that still doesn’t sit right.  I don’t know what would be a better name, maybe Brutal, Wretched, Agonizing Friday?  I can’t stand it when people try to comfort me and brush aside all the pain and the sorrow and focus only on the good.  I know they’re just trying to help, desperate to alleviate some of the sadness.  But this is real.  This is not a movie.  This is not a story.  This is my child.  This is my life.  This is my flesh bleeding out.  And I actually have to live every day looking at my beautiful child’s face knowing tumors may be growing even now, to one day deform and strangle and leave a gaping, ragged hole in my life.  And Christ really did die an agonizing death on a cross because I really have sinned, sinned long and sinned hideously and shaken my little fist at God so many times, spitting on His name.  Those ten commandments – I’ve broken every single one.  And I don’t even have to look out in the world, to Belgium or Trump or some slum in India with little children begging for food, to know just how broken this world is.  I live it everyday in my impatience and arrogance, my selfishness and covetousness, my anger and laziness.  I live it everyday as I scan the details of Allistaire’s labs, and MRI reports and research abstracts and Facebook posts about another friend’s child whose tumors are spreading and he’s losing control of his limbs and his body that was headed toward manhood is growing weaker and weaker.

Good Friday?  It is only good because we know what happened on Sunday and Sunday could never be had we not first lived through Friday.  Easter has everything to do with cancer and it has everything to do with my weariness over having to ask Allistaire for forgiveness again because I tore into her with my words and did not treat her with gentleness and patience.  I wake up from a restless night, neck and shoulders aching, still tired.  And the memory of all the sorrows that I laid down with at night come slamming back into my consciousness with the weak morning light.  But it’s Good Friday and I know because of what happened on that hillside in Jerusalem a few thousand years ago that is not just a story, that His mercies are new this morning.  His manna is here for me to gather today.  He will be faithful to carry me today and every morning I wake up to another day in this life.  Christ Jesus said Yes to the Father and He laid down His life, and it was through this very act that He overcame the power of sin and death.  He found His life because He laid it down before the Father.  So as this day dawns I know death will not have the last word.  My sin will not have the last word.  All these sorrows will be redeemed.  Life will rise up and all our tears will be wiped away.

“Do you not know that all of us who have been baptized into Christ Jesus were baptized into his death?  Therefore we have been buried with him by baptism into death, so that, just as Christ was raised from the dead by the glory of the Father, so we too might walk in newness of life.  For if we have been united with him in a death like his, we will certainly be united with him in a resurrection like his.  We know that our old self was crucified with him so that the body of sin might be destroyed, and we might no longer be enslaved to sin.  For whoever has died is freed from sin.  But if we have died with Christ, we believe that we will also live with him.  We know that Christ, being raised from the dead, will never die again; death no longer has dominion over him.  The death he died, he died to sin, once for all; but the life he lives, he lives to God.  So you also must consider yourselves dead to sin and alive to God in Christ Jesus.” Romans 6:3-11IMG_9246IMG_0257IMG_0255IMG_0247IMG_0239IMG_0238IMG_0230IMG_0229IMG_0224IMG_0219IMG_0216IMG_0215IMG_0131IMG_0183IMG_0188IMG_0193IMG_0199IMG_0211IMG_0119IMG_0115IMG_0110BTIZ2720IMG_9936IMG_0117OMSP2016FICC3705CFNU6254IMG_9925IMG_9930IMG_0041IMG_0040IMG_9905IMG_9902PNPW5709SLGX7998MIOJ4337IMG_9890WBAZ5922NHPA6213APVN6736QVBZ7497ENJE7790IMG_0034FullSizeRender-51FullSizeRender-50IMG_8960IMG_0025IMG_0023IMG_0021IMG_0020IMG_0018IMG_2824

12 responses »

  1. As I read your posts, I am always at a loss for the words to tell my feelings, Most the time I am in tears as I read, tears at times of sadness, at times anger and at times Joy a lot of the time all three before I have read the entire post. Know that you are thought of daily, Prayed for each day several times a day and loved by many. Please give the girls a hug and Happy Easter wish for me and You and hubby give each other a big ol’ Kathy style hug and know you are loved and prayed for. I wish their was more that I could do besides pray, but pray I do and do it often. Hugs and loves to you all.

  2. Dear Jai, Allow me to introduce myself. I’ve been attending Trinity Church in Bozeman for a couple of years – Kathy Tyers and I were married a year and a half ago. She put me on to your posts about Allistaire’s battle, and I’ve been following it for almost 2 years now. We have prayed for you and your family often as a couple, and sometimes during the pastoral prayer at church when Allistaire is mentioned. Many times your posts have moved me deeply, sometimes to tears, and often to pray again. Today’s post for Easter was especially tough, knowing the dark road you’ve had to travel with Allistaire, as well as Solveig and Sten. Last year Kathy and I joined several others from Trinity at the memorial service for Jens. I didn’t have the privilege of knowing him, but the service deeply moved me. I thought, Lord, how much can one family take? May Your grace be sufficient. Don’t worry, I’m not here to preach or tell you something you don’t already know. Your message today was spot on. We can be eternally grateful that Jesus chose His Father’s cup, walked that dark road to the cross and died for us. Truly, our only hope in this world is in His resurrection and the promise that He will restore all things and make all things new. May the God of all comfort be with you, comforting you with His presence and fill you with peace. I know you long deeply to be home, and we’ll keep praying that our Lord will heal Allistaire completely and you can be back in your home with your family.  In His grace,Bill GillinBozeman  | | | | |




    From: Conglomeration of Joy To: wtgillin@yahoo.com Sent: Friday, March 25, 2016 11:49 AM Subject: [New post] Longing #yiv3481205795 a:hover {color:red;}#yiv3481205795 a {text-decoration:none;color:#0088cc;}#yiv3481205795 a.yiv3481205795primaryactionlink:link, #yiv3481205795 a.yiv3481205795primaryactionlink:visited {background-color:#2585B2;color:#fff;}#yiv3481205795 a.yiv3481205795primaryactionlink:hover, #yiv3481205795 a.yiv3481205795primaryactionlink:active {background-color:#11729E;color:#fff;}#yiv3481205795 WordPress.com | Conglomeration of Joy posted: “I was watching a movie…a man trudging through the snow, days and days, months of journeying, comes to the top of a ridge. Out before him unfolds an expanse of evergreen covered hills and mountains with snow, clouds settled in the low lands like a thin v” | |

  3. As always, thanks for sharing your prayers, thoughts, fears, and joys. Thank you for the reminder of what we are celebrating this weekend. And thanks for sharing the pictures of the fabulous fairy birthday party. 🙂 Happy 6th birthday to Allistaire! Still praying for you all.

  4. I was hoping for an update on the Andersons. Your words remind me that fresh mercies and manna are such a comfort. Happy Easter-He is risen! Praying daily.

  5. Prayers! Allistaire you are amazing beyond all belief … Jai and Sten, I know the darkness well but must say it is incredible the love that is apparent within your family! Hate that we “had” to meet you and at the same time so humbled we were allowed to meet!

  6. Thank you for this Jai. Always praying for you, Allistaire, Sten and Solveig. 1 Corinthians 2:7-10: “On the contrary, we speak God’s hidden wisdom in a mystery, which God predestined before the ages for our glory. None of the rulers of this age knew it, for if they had known it, they would not have crucified the Lord of glory. But as it is written: what no eye has seen and no ear has heard and what has never come into a man’s heart is what God has prepared for those who love him. Now God has revealed them to us by the Spirit, for the Spirit searches everything, even the deep things of God.” Your trust in His goodness has strengthened my own.

  7. Jai, I just joined your Obliteride team!!!! We have never met, but my dream for the past year was to be able to fly in and ride with the Baldy Tops. My Sawyer is just about Allistaire’s age. Sawyer has epilepsy, diagnosed when he was 14 months. Your words and your fight got me through Sawyer escalating in seizures that wouldn’t stop, 2 brain surgeries, sleepless scary nights and more. Even more so – you showed me how to pray and talk really about God when you have a sick child.

    Last year, when I was with my family at the lake for a week in July in Montana, my dad asked each of us, “If you could do one thing, what would you do?” You were getting ready for 2015’s ride, and I thought – I would want to ride with Jai.

  8. Oh Sarah, you don’t know how your words have just ministered to my heart this morning. As one who has had to stand by and witness the carnage of this disease, the hurt of my heart weighs heavy-sometimes I grow weary-I so long for the Lord to put an end to this pain and yet, He is the sovereign, all-wise God who knows what He’s doing and He will end it when the time is right. How good it is to hear and be assured that in the meantime, the Lord is using our suffering to help others turn to Him! Indeed, He is our hope! May the Lord strengthen you as you deal with Sawyer’s illness! I hope we get to meet in August at the Obliterate so I can personally hug you. (Jai’s Mom, Kathy)

  9. Jai,
    I ran into your girl the other day, with her Papa, outside Met Market; I was so glad to see her out in the sun, wiggling and chatting. I don’t know what tomorrow holds, but the moment gave me great joy. I was so glad the day’s manna included sunshine.

    Your writing in this entry, and others, reminds of the Odyssey. The weary, way-worn wanderer, facing impossible hurdles, over decades, fighting his way home. It’s partly your language of waves and warfare, being overwhelmed by dark water, and being ambushed. It’s also the unending series of challenges, each one taking more of him. And the suitors in the hall: the cancer in his own house, trying to take his wife, kill his son, eat his wealth. Husband and wife separated for years, longing for home.

    The story reminds me so much of Christ’s triumphal return.

    I don’t know who you are. Are you Odysseus, fighting the waves and monsters? Is Allistaire? Are you Penelope, waiting for redemption? Is Allistaire the house, and the suitors the cancer? Or is the house the whole of Creation, waiting for its King to return and restore peace? I think all of it, maybe.

    I’m praying for true restoration for you all.
    All my love,

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