Every day I think, maybe today will be better, maybe today things will turn around, but every day I feel my face slammed hard up against the wall, the hot breath of terror hissed into my ear, knife against my throat. I feel I can’t breathe. I hold back tears more times than I can count. I’ve felt frantic, in shock. She’s always overcome, there’s always been a way through, but maybe, maybe, maybe this really is that closed door we have so long feared, dreaded.
Her BNP today is 4300. I don’t know why. “Heart Failure,” is all I hear now. It supersedes everything else. Her echo was terribly bad on Monday. Her ejection fraction dropped yet further to 18 (down from 29 last week) and her shortening fraction is somewhere around 9 – I never heard exactly, just a number the cardiologist thought she remembered but I never tracked down because those numbers are just like ragged rusty nails dragged hard against my skin. They tear and burn and with all my flesh I despise them! I hate them with violence and I want to tear them to shreds. I want to explode with rage against them and somehow by force of will destroy their reality, tell them NO! You CANNOT be. You are not allowed here. You are forbid to bind yourselves to my child!
I’ve been trying to get her to eat. Ten bites of chicken noodle soup was the goal for the first half of the day. Three bites of apple sauce. So when she threw it all up, it stung with utter defeat and the words of the cardiologists berating my heart, “Nausea and lack of appetite can be a sign of heart failure.” I strain to find some other cause, some other plausible explanation. And there are – her ANC (Absolute Neutrophil Count) started to finally come up on Sunday after 30 days at zero. Sunday it was 30, then 93, 75 and today 172. Her belly pain has increased substantially with pretty consistent pain throughout the day. My thought is that the pain is related to the increase in white blood cells which go immediately to where healing needs to take place – in her gut. This causes the pain and “worse before better,” just like the infusions of granulocytes did. There is a lot of evidence too that she is having substantial pain related to anticipating pain. This ICU stay has terrified Allistaire like nothing I have ever seen. It breaks my heart that even the nurse just coming to scan her ID bracelet causes her to cower in fear. She has experienced so much physical pain and she feels she can trust no one not to hurt her. Oh it hurts my heart, it hurts, it hurts. So now she is also afraid to eat, afraid of the pain in her tummy and just approaching her with food on a fork causes her to cry out in pain.
I have long sought to yield Allistaire to the Lord, to lay her down at His feet. By God’s grace and His Spirit at work in me, I have bent my knee time after time, knowing that He is God, He decides and it is not because He needs some sacrifice from me. While it must seem mad to some, perhaps to many, I really believe that God will bring good, incomprehensible good of unfathomable proportions from these losses. But oh, how it hurts so bad. Suffering and loss are not some abstract yielding. It hurts down to my fingertips, they ache with blood saturated with pain. My flesh throbs with the deep, deep sadness of loss present and anticipated. In walking with God I don’t just get to say yes, I submit to your authority and sovereignty as God and get to skip over these woes. I walk, I walk, intimately aware of every detail.
Yesterday morning I sought to be still before the Lord and wait patiently for Him. The day before I found myself frantic because all that is in me yearns with brute force to be able to turn this tide. I see our doctor walking down the hall before me, whistling. For him, he knows we are doing all we can and in that satisfaction he can rest. But I walk down that same hall behind him feeling my heart exploding and leaking away from me, legs quivering with sorrow soaked weakness and no matter how well we do all that can be done, it will never be enough. It is not satisfying to me. I want Allistaire to live! It is hard for anything less to ever feel like enough. I went home to Montana this past weekend and it was good. It seemed strange that such a place is real – such an extravagant beauty and gift is that place and is ordinary life. Oh how I long with desperation for ordinary life. A little blue bucket with yellow handle hung from the bush by the driveway, now visible because of winter’s taking away of leaves. It just hangs there, piercing my heart right through with memories of this summer when Allistaire and Solveig would play in that crowded hedge of bushes, their little domain, their fort. I cannot get that blue bucket out of my vision. We went about town, just the three of us and it was good but still it took so much not to just cry and cry and long for a time when this might all be behind us and there are four, four, four as it should be. I think back over last summer when we really thought this might all be okay, maybe she had escaped and maybe we could really live. Those memories precious, feel like distant, far off lands you wonder if they are truly real.
Yesterday morning I sought to be still before the Lord and wait patiently for Him. I rose early to exercise, shower and eat breakfast. As I neared the Starbucks line, I caught sight of a little girl I know and her mom and dad. They now live in House B of Ronald McDonald House, in the very same apartment Allistaire and I lived in after her transplant. They have been given a room there because this sweet girl is now on Hospice. Only a month ago I saw her running around Ron Don, bald head and feeding tube, but joy and life abundant. I saw them a few weeks ago, with shoulders slumped and flat faces and the news that there is nothing left for her. Nothing left. They must give into that beast. And I saw her face yesterday, distorted by her tumors now everywhere in her body, her eye bulging but shut closed, flesh strained and contorted purple from the pressure beneath. I looked upon cancer and its devastation as I went to get breakfast. My heart tattered for them and fumbling for words and perhaps silence that loves. I felt I was looking at my future.
I’ve always known it could come to this. But as this darkness closes in and the light seems so dim, oh how I long to turn away, to flee, to scream so loud and unending that I can no longer hear these words of doom. I weary of numbers that slice. The thing is, I know the Lord will be with me. I know that He will hold me up as He does today. It seems too awful to endure and if so, that means I won’t have to endure it will I? No, I very well may have to walk, one tedious excruciating step after another, but I know I will endure. But why, why must this be? What is the point?
A friend of mine whose son died recently fears that her son’s death was punishment from God. How I long to offer her words of life that would take away this overwhelming burden. I went to the passage where Jesus sees a blind beggar and His disciples ask Him why this man was born blind, was it he or his parents that sinned. Jesus responds in John 9, “It was not that this man sinned, or his parents, but that the works of God might be displayed in him.” This man was desperately poor and blind from birth for the direct purpose that God’s work might be displayed in his life. What sort of exchange is this? Why this wretched suffering so God can get glory? Does He really need more glory? My gut response to the idea that God would cause/allow suffering for His glory is that He is an arrogant asshole. But this is not the end point, His glory is not His aim. His work in our brokenness manifest His glory for the direct aim that we might see Him for who He really is – that His glory would reveal His true self as our only salvation, our only hope, our only source of life. He seeks glory that we might know His love, for that is His ultimate glory, His great love. He loves us and He wants us to have life and He will exact whatever it costs to give us eyes to see how desperate we are for the life He offers. He loves us and He is ever extending His hand and inviting, inviting us in, in to dwell with Him and to be satisfied.
Why must Allistaire suffer? Why must I? In my finite view with my finite heart I can only guess and grab at a handful of small reasons. But what if it is for my friend? What if in my brokenness she can see the hand of God extended? What if He makes His glory known in my life for the express aim of drawing people to the only source of life, which in itself is ultimate mystery, ultimate suffering, ultimate life. It is the bled out heart of God through the sacrifice, the death of His Son Jesus Christ that life in Him is made possible. Who am I to liken myself to Christ? What is my life? It is but a breath, a vapor, but it is my great, immeasurably dear gift to Him. Shall I suffer? How shall I live out each of these days that seem to cut and gouge relentlessly? I walk, nay, I am carried by Him. I now rejoice in the dependence in Him I once reviled. I know not the days ahead, I even dread the hours that will bring by the cardiologists. I don’t know how to let go of this fight. I don’t think I shall until there is nothing left, nothing left.
Most High God who has come down so low, compassionate, merciful, gracious High Priest who is acquainted with all my sorrow, carry me. Make your works displayed in our small lives, for your glory, so that we may all swoon at the beauty of your love that causes us to fall at your feet and be held in you. Spirit of God, help me to be still and wait patiently for you.
Here is a link to sermon by John Piper about the blind man.
Conglomeration of Joy 
Jai, my heart tatters with yours. I walk in prayer with you. I ache for your suffering girl.
Oh, Jai, I’m weeping with you, friend. And of course praying for you and Allistaire.
My heart is breaking and my love and concern for you, Sten, Allistaire and Solveig is small indeed when compared to the love of our Lord! Our hope is sure and we look ahead to that great day of the Lord when all things will be new and we shall see Him. Strength for today and bright hope for tomorrow; comfort for your broken heart is our prayer! Love you!
my heart is full and broken for y”all. Yet I am encouraged in that God gives you His beautiful words to strengthen all who reads them. Please know that y’all are greatly loved and prayed for constantly.
Can’t believe it is coming to this. Jai, your conviction and passion and honesty are as beautiful and strong as what is happening to you all is horrendous and ugly. Sending you love and sending up prayers with and without words. Lord, have mercy.
Oh, what a load it is you have to carry! How much you must wrestle with! May our God continue to sustain you and sustain your faith and hope in Him. There seems to us no logical explanation for all this… I am reminded of something our pastor said a few years ago in a sermon: “We have no idea what it takes for our God to reconcile a broken, sinful world.” Some day it will be made plain to you. Someday. But for now our tears our real, the pain is real. You have people you’ve never met praying for your family. Hugs and prayers from California.
From one Mama of a sick kid to another, I read your blog with a sense of reality. These are the hardest days a mother is expected to endure. It is with great empathy that I hold you up in prayer. My family prays every evening for Allistaire’s healing. I hope you feel carried on the wings of the prayers of all God’s people.
Jai, As I sit and read and in-between the tears re-read you post, I am at a loss for words, Know that Allistaire and you are in my prayers each and every day several times a day… I will be praying for strength and courage for you all, Praying for that huge miracle of complete healing. Sending lots of hugs, loves and puppy loves from us to you. Date: Wed, 18 Feb 2015 19:48:38 +0000 To: kathybarnes102@msn.com
You are constantly on my mind, and I am praying for you, Allistaire, Solveig, and Sten.
Oh Jai I Wish I could come give you a big hug and a miracle! My heart breaks for u and beautiful little Allistaire. Sending u all my love! Hopefully I’ll be better soon to come visit.
No Jai! My heart hurts for you…so brutal. Jesus, sweet Jesus, bring comfort that only You as God can bring. My heart is with you, Sten, Solveig and Allistaire. I love you guys.
Oh I am continuing to pray to our miraculous God. Love you Jai.
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I am praying for you and Allistaire and your whole family. May the burden become less and may the days become brighter. So much love, you are always in my thoughts.
xo sherrie
I am praying her! On my knees daily…I love you friend, you are never far from my thoughts.
Praying for all…
I cannot imagine the fear and panic and sadness you must feel. God, what we wouldn’t do for our babies. I am so sorry for the continuing scary news. I’m praying for a miracle.
My soul reaches out to you Jai, and I’m sending you comfort and hope. I pray for you and Allistaire, for your family. You describe the same path I know too well. I understand the daily challenge of facing medical information that you don’t want to be true, the despair, trying to find hope in each day, the contrast between your perspective of the day and the doctor’s (or the rest of the world’s), suffering too through your child’s pain, the angst and threat of loss. I know what it is to wonder why exactly is it you and Allistaire are being asked to endure so much. I wish I knew (or do I?). I am so sorry you are walking on a path like mine. I pray you are led off of it, in a direction that will return you and your family to the treasure of the ordinary life, to the blue bucket. I appreciate your beautiful, honest expression, and your effort to find comfort from your love for God, from your faith. May God help you, strengthen you, give you resilience and hope throughout your journey, wherever it takes you.
As I read your post this morning I had to run out the door..praying as I went ….as I was driving Ps 23 kept coming to mind… so I used it as my bases for praying for you …I so see you following HIM as your SHEPHERD and see you gaining strength from your relationship with HIM …therefore giving us who read your blog insight to how “our” shepherd leads. Allowing us to cry, ponder, scream, even rest in knowing that HE is IN you giving you words, thoughts and strength to continue in this part of your life’s journey. Sending cyber (((((HUGS)))) from GOD & me with HIS LO❤️E & mine, Vanita
Jai,
I have been following your blog since shortly after you started writing it. Thank you for being transparent and real the entire time. I have prayed for you as you have found yourself on mountain tops and in incredibly dark valleys. I cannot imagine what you are going through as I have never been asked to walk the path you are on. However, my life has had its share of dark valleys and I want to testify to the fact that no matter what happens in life, God walks that path with us. The older I get, the more I see that we are so very loved by a mighty, mighty God who is ever with us and fights for us just like you have been fighting for Allistaire. Someday Jai, we’ll get it; we will understand why the really hard things in life happened but right now we have been given the privilege of trusting, of believing without seeing. I am writing this with eyes full of tears and ever so much love to you and Sten and Solveigh and Allistaire.
Irene
Praying for you, Sten, Allistaire, and Solveig dear Jai. You are so precious… love to you. Grace. Peace… Courage… Oh Jesus, comfort Jai and speak tenderly to her. I love you, Sister.
Praying with you. Thank you for sharing your beautiful heart with us.
Dear Jai,
Prayers continue to come your way from St. Louis. Our hearts are heavy with sorrow and love for all of you tonight. May the Lord keep you and Allistaire in His everlasting arms.
“There is no one… NO ONE!… like the God of Jeshurun,
who rides across the heavens to help you
and on the clouds in His Majesty.
The Eternal God is your refuge,
and underneath are the Everlasting Arms.”
(Deut. 33)
Jai my heart breaks for you, my tears flow for you and my prayers go up for you. Love you my sweet friend. God is enough. How hard that is to believe at times. May He hold your hand through this dark time and give you unimaginable peace and comfort and rest.
Jai, I am at a loss for words but know that while so many of us cannot know your pain precisely our bodies ache, tears fall, and we tremble before the throne of God on behalf of your entire family. Love and long long hugs to you.
Dear Jai… My chest was heaving last evening as I read this.. Thank you for your candid sharing. Not only do my husband and I (both Bremerton BSFers) feel closer to you and yours, but we also know we are privileged to share in this season of life for the Anderson family. As I read all the 22 other comments so far, I read how most have said all I may have contributed, so let it suffice to say you have 2 more prayer warriors who are aching with you over here on the Kitsap peninsula! When we were carried through 2 major traumatic periods in our older children’s lives, the songs GOD WILL MAKE A WAY (when there seems to be no way!), as well as the ‘good old-fashioned hymn,’ TURN YOUR EYES UPON JESUS (and the things of earth will grow strangely dim in the light of His glorious grace!) really helped me since I am a musically minded sister-in-Jesus. May you know HIS song within this day… Because He Loves Us.. He can’t leave or forsake us..
I’m praying for her miracle, Jai. Praying for the Lord to mend her heart and to hold you up in this valley. Weeping with you and sending all my love.
My name is Beverly, and I live in Alabama but am originally from Bozeman. A friend of mine has kept me updated on your story. I have to comment on what I see as a powerful working of our God, like a ripple effect. Not all of us are so eloquently spoken as you are, but so many of us have to endure intense suffering. It may not be the same as what you are facing as you watch your little girl go through what she is. As we all know, suffering is part of the human state. But, because God has gifted you with the ability to so beautifully put into words all of the many conflicting emotions that you feel, the rest of us, and I can only guess at how many people read these posts, are blessed! The fact that you trust in the One who knows it all and are so sure that His purpose in this trial will prevail, IN SPITE OF IT ALL, speaks power and healing and TRUTH to the rest of us! So may I just add to the encouragement that you receive from so many others: God IS using this for His glory, and through you, He is changing hearts everywhere! I know that there are times when you are not so sure, but I know that our loving Father has chosen you, your family and His precious Allistaire for this powerful assignment and He is always trustworthy and faithful to get you through it! Thank you, and God bless you and your family! You will be in my prayers!
Sent from my iPad
I know no words to bring comfort. Please know we will continue to beseech our God in prayer for your child, you and your family. -Your Friends in Port Angeles
My heart breaks for you as I continue to pray and am amazed at your continued strength in GODS LOVE💕💕💕
There’s no simple answer, no comprehensible reason for any of this to which we humans will ever understand. That said, meeting you and Allistaire kept me true to my Faith when most needed… I find it weird to thank you for something like that… Something neither of us chose . Thank you a million times over though… Your family’s strength empowered mine. Your continued selfless devotion to others amidst your own raging storm still amazes me, inspires me and leaves me in awe. We pray for Allistaire every day and ask God give you all strength. From our family to yours we send love and prayer!
Oh jai, its with tears running down that I write this…I’m so sorry allistaire , you and your family must walk this way. I cry out to God for a miracle…for He is the ultimate heart healer. I dont claim to understand His ways, but I know He is LOVE. I am also praying for your continued faith to believe this, for it is true no matter what. “Trust in Him at all times, oh people; pour out your hearts to Him, for He is our refuge.” Ps 62:8.
Proverbs 4:23 “Keep thy heart with all diligence; for out of it are the issues of life.” Don’t let fear bind it up, Fill it with the living word Jesus Christ, with love, courage, and strength that only He can provide. Never give up. Even too the end. If at the end, you’ve done everything. The Lord is just getting started!
Proverbs 22:5 “Thorns and snares are in the way of the froward: he that doth keep his soul shall be far from them.” Continue to seek encouragement from the God and His word. He will not forsake you. When the body is not willing, keep your trust in Him. He will stirr in you a fear conquering lion. Lean on Him! I will prayer for both of you, that your fears be traded for love and courage, that your doubt will be replaced with His foundation and direction. In Jesus name!
Your suffering and passionate faith and love for God makes me stop and reflect on gratitude – makes me love and appreciate my children and hold them tightly… Praying for your lil’ girl and your family… May God continue to carry you…