The room was nearly square and the walls were painted white and unadorned. The only color was the honey yellow of the pews and floor, well, that and the bright blue of sky that filled each window. Sun poured in and lit the air. The voices rose up and out, no accompaniment of instruments, just pure human expression of lungs filling and pressing down. As we began each song, it came to me again: these people know how to sing; their voices blending together with strength to worship their God. Hymn after hymn declaring His glory and love and provision.
I had begun to cry as I walked up to the church, when I did not expect to. I cried as the men bore his casket down the center of the room and placed it up front just feet from where his parents and little brother sat. I cried as we sang all three verses of “Jesus Loves Me.” Just as the words of scripture have become ever so much more real and known in these hard times with Allistaire, so did the words of the hymns take on dimension like never before. Streams of tears ran down both sides of my neck. Tears for the bluntness and realness of death, that it really can and sometimes does, come to this. Tears for the knowledge that this mom will never again in this life touch the warm flesh of her child nor hear his voice or see the light of joy and excitement in his eyes. Tears that we ourselves, might come to a day like this. Tears for the mystery that we could sing praises and adoration for such a good God who both allowed this day to come and who loves us so completely and so tenderly. Tears that we live right now in this earthy life and that we must continue to wait for the fulfillment of many promises and tears that there is an eternal view that buoys us up.
Crisp white shirts, dark vests and beards of varying proportions and color. Dresses almost sweeping the floor, sleeves touching wrists, flowing fabric of like cut and variation of color and pattern, transparent stiff white caps with hair bound up within. These are the Old Brethren German Baptists of which Benton’s family is apart. May I say it was true delight to be with them, this part of Christ’s body that is new to me and part of me as I am part of Christ’s body. These are my brothers and sisters, bound by the same blood. Our deep fundamental need for a savior and the overwhelming flood of God’s grace through Christ resonated true as I listened to the men speak. It was pain to look into the casket and see Benton’s face distorted in the end by the rapid growth of his cancer and it was pain to hear the thud of dirt hitting the closed lid, and pain to see the mound of dirt covered in flowers when at last I could see past the hundreds that had gathered. But Benton is not there. He is not in that casket; he is not in that dirt that confused his little brother. Now he sees His Lord with unveiled glory and Benton has been made new. So we gathered in the great hall and feasted on a bounty of delicious food and everywhere the walls echoed the sounds of talking and laughter and life.
I went to Benton’s funeral because I felt compelled to go, drawn. I went to face what is real and what is possible. I went because it felt sacred, I felt the need to bow my head in prayer and lift my jaw in song to mark this passing, this leaving of one life to enter into fullness of life. Life eternal. Life abundant. I went that I might look Rachel and Merle in the face and know their pain but thank them too for going before me in a way, going before me in faith. I wanted them to know that I will continue to beseech God our Father on their behalf, asking that He would continue to uphold them and Benton’s brother, Wilson, as they make their way forward, now both free of the constricting hold of cancer, but yet severely wounded by its ravages. I wanted to dwell with the body of Christ in such a time as this. I wanted Benton’s death to be surrounded by the truths of God and not simply the truths of science and the hospital world. And it was good too, to be with a few families connected to the hospital by their own children’s fight against cancer and more so connected by Christ and our hope that He would hold us up now as we all await each next step, each next scan and bone marrow test, to know the unfolding of God’s plan.
Sometimes we do not know how we can possibly go on because the road ahead seems so very long and unbelievably hard. The cardiologists came by earlier in the week to discuss the already decreased function, the weakening of Allistaire’s heart due to her chemo and their desire to give her medication in order to try to protect it going forward into transplant. The damage can continue over time and the possibility exists, while unlikely, that one day her heart could begin to fail and she would need a transplant of her heart. “Either she dies or it just doesn’t end,” I cried out to these two men, who simply stood and nodded with grave faces. When I consider the possibilities it is all so overwhelming. It is lie that God does not give us more than we can handle! Do you think I can handle this? NO. But it is truth that He does not leave me alone to handle it because He takes it up upon Himself and enfolds me into Christ, tucking me inside Him that as I dwell in Christ, I can walk under the weight and am not buckled or crushed because over me and around me is my mighty God who not only carries my burdens but carries me as well.
What in the world does it really mean that God will carry me? It all sounds so lovely but in the thick of it, when you hear the word, “hospice,” what can God really do, tangibly to care for me? I cannot tell you how and I wondered when this all began again, would He really, truly show up in that darkness I so feared. He told me, so clearly He told me, “I AM in that darkness, you WILL be found by Me. I AM the God who turns darkness into light.” These were His claims to me, and while I put my hope in that, too I wondered if such a thing was truly possible. I reminded God that His name was at stake – “You had better show up God!” And as I walked further into groping darkness, darkness thick and darkness suffocating, there was eventually a turning. It did not happen in a flash, in a moment. First I had to feel the darkness, to experience its cloaking of my life and its attempts to devour me, to come swamping into me, trying to drown me. But in relatively short time, there was turning of darkness to light. Truly it was like the darkness of night being turned to light of day. You look for it. You stare and you cannot see it, but then you are aware that it is happening – it has happened because you see light where there had only been darkness. You watch it unfolding around you and you laugh because it is happening when you didn’t know how or if it really would. I cannot tell you exactly when God turned this dark into light but I can tell you with certainty, I walk in the light today. There is joy this day. The Spirit of God has been at work in my heart and giving me eyes to see. Again, as I did nearly one and a half years ago, I know peace that passes understanding, that doesn’t make sense, that should be absurd were it not real. There may be darkness ahead, darkness like I have not yet known, but with each step forward, being held in Christ, I am even more expectant of dawn.
Tuesday and Wednesday evenings are Allistaire’s last days of chemo prior to transplant. Dr. Pollard has scheduled Allistaire’s bone marrow test for next Monday, May 20th. Typically we will know preliminary, morphological results that afternoon assuming it was scheduled early enough in the day for the pathologists to have time to review it. Flow Cytometry results will take a day longer. At the bone marrow meeting last Thursday, it was decided that if Allistaire has blasts over 5% but less than 25%, they will still prioritize the clinical study transplant involving the conditioning chemo, Busulfan, and the 10 out of 10 matched donor due to its better statistical outcomes. So we wait, but it is wild to me that we are at last nearing the end of this part of the process. In about one week we should know what direction we are headed with regards to transplant. Please be praying that if we need to make use of the donor marrow, versus the cord blood, that arrangements with the donors can be made quickly and without snags.
I also wanted to take a moment to address all you sweet, sweet folks who have and continue to pray for us and give so generously to encourage us and ease the burden along the way. First off, please forgive me for failing so miserably in being in contact with you and getting out thanks in a timely manner. Please know that every text, phone call, card, visit and gift, is such a joy to Sten and I and really, truly means so much to us. Thank you for all your faithfulness in your prayers and for those who have amazed me with your consistent encouragement with cards and such – you are such an example to me that I hope to one day emulate.
Many of you have expressed concern that you do not know what to say or fear that you may or have said something wrong. Here’s the deal – this is a time of wrestling – for all of us – there is no neatly packaged set of words that can change this reality or take away the pain of it. I am not expecting such from you and you should not expect that from yourself. The point of words are two-fold: to be an expression of love and care, and to sort through what all of this means and is. Wrestle with your words. Do not give up because it is hard or because they seem insufficient. They are, on one hand, utterly insufficient! Again, words will not take away this reality or the pain of it. Yet words have power! Words make something more real! Remember Christ is called The Word! God is clearly all about words. And while the book of James makes it clear, we can bring about great harm with our words, please do not keep silent for fear of your words being imperfect. This reality with Allistaire is forcing us all to pull out all the big questions of life – they are out in the open for us to examine, to attempt to name and describe and understand. Let us not fear our insufficiencies so much that we remain quiet and shove the questions back into the recesses. I speak and I write because I want to explore this land of reality I am in. I head this direction and then see no, it is not quite right or it is lacking in some way or overemphasizes or underemphasizes something of import. But I must strike out if I am going to have a shot at learning this place in which I dwell. Do not fear being trite when conveying God’s word to me – God’s word is mystery and wonder and gigantic truth, too big for any of us to scale, but say it, name it, declare it and know that we both see that we are touching mystery. Ann Voskamp talks in her book, “1,000 Gifts,” about how when God had Adam name the animals, there was a way in which the naming was about taking possession, about taking hold. We use words to hook into realities that we might better take them into ourselves and consider their many facets, dimension upon dimension. Our words can never be enough to conquer and dominate these enormous realities, and yet, why deprive ourselves? Let us begin, as we grapple, to more and more take hold of that which God has given us and convey love to one another at the same time!
Tomorrow is our last children’s class at BSF. Oh how we have missed Allistaire. Your family is always in our prayers. Thank you, from the bottom of my heart, for sharing all that is happening with your precious child. Thank you for giving me specific things to pray for. Thank you for words which comfort and encourage me in my daily walk as you share God’s amazing care moment by moment. Praying with expectation, bellena
Jai, Thanks for this post as all the others. I know that you expend a lot of energy and time to put this journey down in words. I love the description of the funeral of this friend. It makes me long to meet this family, and have joy that someday I will. About your friends who don’t know what to say: Those of us who have been “friended” by Job’s friends in a time of sorrow realize that we are just one good intention away from becoming them. Thanks for the gracious way you’ve given freedom to say what is on our hearts and let pass by any unintentional harm done with words.
Allistaire blowing the fuzz off the dandelion with her own fuzzy head is some kind of beautiful irony that I cannot get a hold of. I love it.
Continue to think of you all, all the time.
Darling photos of Allistaire….and thanks for the heart catching details of how difficult it must be to let your child go. I too enjoyed the voices singing together in perfect harmony. I just finished the Beth Moore study on the book of James…what a delight it was!
Thank you for your words, Jai. They mean more than you could know to us! My words have been not so much to you, but to our Lord on your behalf…and they continue many times daily. Still asking for that miracle. I’m sorry Gina and I didn’t get to visit while we were in Seattle last week, but it was best. Gina’s little one was sick, and Becky’s got the stomach flu the next day! Will keep praying!
You continue to be in our prayers. Allison has an appointment on Friday. Hope to see you.
Jai, dear Jai – you have written with a depth of understanding that only comes with pain and sorrow. Your deep awareness of the big picture and who and where the Lord is in the middle of it blows me away. You have truly chosen to not just “survive” through your unimaginable heartache but to “thrive!” Tears streamed down my face as I read your words, but my spirit was soaring to think of such Faith…a Faith big enough to receive the Lord’s deep down joy and peace in the midst of the scary unknown!! Thank you, thank you for your blogs! They are rich and powerful!! Much love to you Jai, Sten and the girls!
Thank you for your honest words and taking us along on this journey.
You’re in my thoughts in prayers each day.
Allistaire’s smile warms my heart. She is simply beautiful!
2 Corinthians 5:4 NLT
“While we live in these earthly bodies, we groan and sigh, but it’s not that we want to die and get rid of these bodies that clothe us. Rather, we want to put on our new bodies so that these dying bodies will be swallowed up by life.”
Hi Jai, I’ve been following your blog for awhile and so love and deeply appreciate your carefully chosen words that convey such depth and authenticity. We recently lost our daughter as a result of two very rare heart defects. Some days the grief is crushing but the Lord gave me these verses yesterday and I wanted to share them with you in relation to what you shared in this post –
“If I say, ‘Surely the darkness will overwhelm me,
And the light around me will be night,’
Even the darkness is not dark to You,
And the night is as bright as the day.
Darkness and light are alike to You.”
I’ve been praying for you guys and will continue to.
This is my prayer in the desert
When all that’s within me feels dry
This is my prayer in my hunger and need
My God is a God who provides
And this is my prayer in the fire
In weakness or trial or pain
There is a faith proved
Of more worth than gold
So refine me Lord through the flames
And I will bring praise
I will bring praise
No weapon formed against me shall remain
I will rejoice
I will declare
God is my victory and He is here
And this is my prayer in the battle
When triumph is still on it’s way
I am a conqueror and co-heir with Christ
So firm on His promise I’ll stand
All of my life
In every season
You are still God
I have a reason to sing
I have a reason to worship
This is my prayer in the harvest
When favor and providence flow
I know I’m filled to be emptied again
The seed I’ve received I will sow
My love to you, facing the unknown and unfaceable, yet doing so with the God carrying and bearing and weeping and holding you tightly. I continue to pray for wisdom, new options, protection, healing, and that, ultimately, Allistaire could be a light of hope to future children with AML, as these experimental therapies prove themselves to be effective and powerful!
Love & prayers continuing! May God keep holding your family close to His heart. Thank you for putting words to your struggle & faith… They are beautiful, as are Allistaire’s dear pictures.
Hello Jai, I’m Benton’s dad. I couldn’t believe it when I seen you at the funeral last Saturday. Thanks so much for being there and sorry that Rachel and I could not spend more time with you there. I called Children’s today and talked to your dad and gave him my phone number. Call anytime. Within 3 hours we can be in Seattle and will if you need us. I don’t hardly want to tell you what the past week has been like without Benton, but be assured, God gives more grace than we can comprehend. We have a good Father! (509)225-0922 anytime. Merle and Rachel Brovont