Ache

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IMG_2485When I went to stand, I found that the strength had drained from my thighs.  I felt weak, about to crumble and my face does, it contorts and pulls and my temple pounds.  I keep my head low and the sobs come.  I hide behind my sunglasses, trying to find a way out, where to go?  I circle the outside of the hospital desperate to find a place to be alone.  How can it just keep being bad news?  Is it really possible that this is my child, that this is me, this is my life?  She is too full of life and delight and joy.  How can she be the one to die?  I feel so weary.  So very tired.  I cannot even cry as much as I want because my heart feels dulled by the pounding of bad news after bad news.  The pain in my face is intense, and in self-preservation, I try to keep the tears from coming – because it is not really the tears but the unbelievable pressure of pain, seeking to be released, pressing on the inside of my eyes and cheek bones.  I feel lost – I don’t know where I can go to be alone with this grief.  I wander and settle on a sunny set of back stairs because my skin is chilled and raised with bumps despite the warm afternoon.  I wonder how long this torture is going to last and then immediately I correct myself and know that this torture is nothing to the torture of her actual death coming to be.  I think of Rachel and Merle and my legs shake as I imagine how forlorn they must feel, how every day and every night is met with the knowledge that he is gone.  Gone.  I think of Allistaire and I am them, trying to live each day, trying to live in a life with a gaping, swelling hole.  There is no thought now and no action that does not get linked with thoughts of her death.  Any attempt to think of the future, whether a month or a season or a year from now, is tied to the vision that she may not be with us.  I don’t buy a size up if I buy her new clothes at all.  She may not be here –she may not grow into a size four.  She asks me about being a baby and if she is big now.  I tell her yes, you are big.  She exclaims while asking, “I’m getting bigger?”  “Yes, my love,” yes and it hurts so bad not knowing if you will ever really be big.  I watch her eyes that lie in stretched lines, the corners of her mouth downcast, the slightest bit of pain in her expression when she asks, “Do you know that I love you mommy?”  “This much and this much and up into the air,” she says with arms outstretched.  I love her so and the pain slices through the moment.  Every morning when I awake whether in the hospital or out, there is the dull thud that something is wrong, this is not what life is supposed to be.  I went to my locked cupboard for room 269, to pull out the fuchsia towel I brought from home to dry the purple bowl and the spoon with the swirl at the end of the handle.  I brought one green plate, one purple bowl, one glass with the yellow daffodil and the green leaves, one fork, one spoon and one knife.  I suddenly saw Sten with the dish towel perpetually thrown over his shoulder when he’s in the kitchen and I missed him so bad and I found myself crying, missing a different life where there is not pain and sorrow and brokenness all around.  I thought I was merely going to eat a bowl of GrapeNuts.  I walked to Starbucks during her bone marrow test and I saw the boy with hat and glasses, the color of his neck both shockingly white with red blotches, his hands not really hands but melted, I assume burned.  I want to run and run and run.  What is this place?  I am so weary of being surrounded by sorrow and defeat and broken and scarred and I wonder, will there ever again be good news?  But I have to keep going.  I have no other choice.  It’s time for Allistaire to wake up from her nap and it’s time to change her dressing, after all, it’s Monday.  We do this over and over and over and you wonder when will it end and you stop yourself, because it ending could be your worst fear come true.  You can’t ask for it to end because you cannot imagine your life without this one you love so much, so thoroughly, so utterly.

Morphological results show that Allistaire’s bone marrow is about 70% cancerous.  Flow Cytometry results tomorrow will give a more precise count, but regardless, we now have one option: the transplant with the matched donor.  The bone marrow doctors are conversing to make sure that Allistaire really is qualified for this clinical study that is her only option.  Tomorrow at 2:45 she will have a CT scan of her chest, abdomen and pelvis.  She will remain sedated for an MRI that will look for disease elsewhere in the body, such as the brain and along the spinal column.  I don’t know what it will mean if she does have disease in those locations.  It will be likely a hard day because Allistaire cannot eat after 8am until she is out of her sedation, which will likely, be after 4pm.  She cannot drink after noon.  The tests are of course right during her naptime.

I am a reader.  I love to read.  When I was a teenager I would make myself sick on Saturdays, staying in my room to read a good book, not wanting to eat or even stop to go to the bathroom.   In all the best stories there are unbelievable lows where all seems lost, but you keep going, sure you are on the scent trail of redemption – you are sure it will all work out even if all seems like a wreck.  Every fiber of my being aches and burns with sadness and sorrow so expansive it cannot even escape the confines of my flesh.  And I ask you Father, Redeem, Redeem, Redeem!  Turn this around somehow!  But I don’t know how long the story is.  I don’t know at what point this day lies in the tale. Hold fast to me Father.

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23 responses »

  1. Whether you get to cherish her love for a little while longer or the rest of your life, you have a true gift in Allistaire. You have an army praying with you and for you, no matter how we’ve come to know you and your family’s story.

  2. Deuteronomy 31:8
    “The LORD himself goes before you and will be with you; he will never leave you nor forsake you. Do not be afraid; do not be discouraged.” (NIV)

    I know, I know… much easier said than done. I know you have heard this a thousand times, but I will say it once more, you, Allistaire, your entire family are in our prayers continually. I desperately plead with God for your precious daughter’s healing, I ache for you, I cry for you, and I so wish there was something I could do to ease the intense burden. I pray for comfort, for doctor’s wisdom, for miracles, for peace, and that tomorrow will be a brighter day with GOOD news!

    • Stacy – no, I am thankful to hear those words – they are truly my only hope – they are the only thing that makes this day bearable. Oh how I need Him to surround me, to have this all fit into something worth it. I must choose day by day, many times a day to lift my eyes – to look for the Lord.

  3. I have no words and can only feel the pain you divulge through your post today. We are thinking of you and here to help; though we know it’s a futile attempt in taking away your pain.

  4. Thanks for sharing so raw and openly Jai. “The God of angel armies is always by your side.” I have no words….but that your family is in our prayers. Love Karen

  5. Praying with you and for you tonight, Jai…. I love all the pictures of Allistaire and am so thankful you’ve gotten to spend time outside with her.
    My kids were listening to a song tonight from Isaiah 43:2-3….God’s words to Israel, but praise Him that he formed and loves us gentiles too! 🙂
    “When you pass through the waters I will be with you; and through the rivers, they shall not overwhelm you; when you walk through the fire you shall not be burned, and the flame shall not consume you. For I am the Lord your your God,the Holy One of Israel, your Savior.”

  6. Oh, Jai, I’m weeping with you. Gayle and I just prayed on the phone for you and your family. Love you, Betty

  7. Dear one,
    We leaders at BSF in Bozeman will be praying for your family and that Allistaire has hit bottom today. That this will be that day that her story turns around, May 21st, 2021. We all ache with you dear one. I pray you will feel Aslan’s breath near you as He moves into the picture to do a mighty work in this story, a redeeming work. Much love, RobinO

  8. Gah. I just weep with you. I pray with you. Redeem, Father. Make blessing out of wrack. Heal, Rapha. You are so close to my heart each day. Allistaire has crawled her way in and settled, like a bird, in my very soul. I am praying with you, desperate to pray with hope, FOR hope. I love you, my friend.

  9. I too cry out, “How long, Lord? How much more? How long will you let this stabbing of our hearts go on? Have mercy, Lord God! Please have mercy!” The answer: “My thoughts are not your thoughts, neither are your ways my ways,” declares the Lord. As the heavens are higher than the earth, so are my ways higher than your ways and my thoughts than your thoughts.”

    Both the challenge and the comfort to me comes from God’s revelation in Genesis, that book which many of us have just completed in our BSF study. The same God, the Almighty One who spoke the world into existence, the One who said, “Let there be light,” and there was light,” the One who placed the sun, moon and stars in the sky, who made man in HIs very own image, the One who with grace called out a people for Himself, that One also has said:
    “Lift your eyes from where you are…” Ge 13:14
    “Do not be afraid. I am your shield, your very great reward.” Ge 15:1
    “Is anything too hard for the Lord?” Ge 18:14
    “I am God, the God of your father….Do not be afraid… I will go…with you.” Ge 46:3-4
    “God will surely come to your aid.” Ge 50:3 & 4

    Lord God, enfold Jai in your everlasting arms; strengthen her in every possible way; please bring comfort and healing to her hurting heart.

  10. Jai, I’ve been following your blog for a few weeks now. My heart ACHES so deeply for you and your family. So, so, so many prayers for your beautiful girl. I was also inspired to register with the “Be The Match” bone marrow program. If I could help someone’s family in that way I would be ecstatic!

  11. I read your message this morning, first thing. I have cried so many tears. I have not known what to say. I still don’t. Just know that you all are so loved. I hold to hope and to The Lord with you. I am praying for abundant light to shine in this valley.

    I pray His protection from this enemy.

    “But you, O Lord, are a shield for me. My glory and the one who lifts up my head. I cried out to The Lord with my voice, and he heard me from His holy hill. I lay down and slept; I awoke, for The Lord sustained me” – Psalm 3: 3-6

  12. Oh Jai, you don’t know me but I lie awake at night and pray for you and Allistaire and your family. Your words have continually pierced my heart and even taught me to pray. We lost our daughter on April 26th, 3 weeks and 4 days ago, at 30 weeks and 1 day in my belly due to two very rare heart defects. We too were in Seattle, preparing for her care, hoping against hope that she could make it to a point where her tiny body could handle the surgeries.
    It is not easy but my hope lies where yours lies. In a sovereign Redeemer who sees the end from the beginning. Nancy Guthrie says it so well – knowing Christ does not remove the pain; it keeps us from despair.
    I know our situations are different but just know I ache with you, I grieve with you, I pray for you, and in a way that only makes sense in the body of Christ, I’ve come to love you and Allistaire and your family.
    May Christ be all sufficient for you today.
    Sara

  13. Jai, you all continue to be in our prayers and our hearts. We don’t know if we have a lifetime left or less, but as much time as you have with her I know you will cherish each and every. As you say, lift your eyes to The Lord. He is here with you and will carry you through. Take each moment in itself and truly live there, in the present.

    Much love to you!
    Stefanie

  14. this has always been one of my favorite quotes, “you never know how strong you are until being strong is the only choice you have”. I’m amazed at your strength and i pray for your continued strength. Please know how much you guys are loved.

  15. Jai,
    As I read your post I openly cried, I am Praying for Allistaire each and every day, pleading with God for healing. I am at a loss for words for I just can’t find the ones to convey my thoughts, So know you are loved and being Prayed for daily.

  16. Jai,

    I’m so sorry to hear the results of the bone marrow biopsy. I don’t know what to say. My heart breaks for Allistaire and all of you, and you are all in my constant thoughts and prayers. I pray that the CT and MRI scans have good news and allow you to go forward with the clinical study.

    Thank you for such an honest account of the patient and caregiver side of cancer. Your story is one that every person in medicine should read. Being on the medical side (I’m finishing my radiology fellowship), you see the patients and their families, but sometimes you forget that the patient and family members have lives all of their own. They have lives outside of the hospital wards, outside of the charts, lab results, and CT images. The patient in the CT and MRI images is a real person–not just a set of pictures with a diagnosis to be made. You try not to forget that point, but sometimes you do. Maybe it’s a protective mechanism, maybe it’s the overwhelming nature of illness–I don’t know. Thank you for taking the time to share your story. The pictures of Allistaire are beautiful!

    There are many heart-wrenching scenes surrounding a children’s hospital. Kids shouldn’t be sick. They shouldn’t be burned. They shouldn’t hurt. They are too sweet and innocent. But thankfully, there are hospitals made especially for children. It’s such places that someday, someday will be the places that find cures for children’s cancers and diseases.

    I know such words offer little consolation, but thank you. Thank you for being such a wonderful and caring mother, caregiver, and storyteller.

    Peace be with you,
    Aubrey

  17. I follow your journey with prayers daily! I know that your strength to go on comes from the Lord and it is obvious by your writings that you are so very faithful. We can’t understand why little children, especially, are to suffer from such dreadful diseases. You are giving little Allistaire such devoted love while your heart is aching. My prayer is that a miracle happens for Allistaire and that your heart will be enveloped in the peace of the Lord. Please know that fervent prayers are headed your way all the time from Laurel, Montana! I wish I could give you and Allistaire and your husband and Solveig a hug. Please Dear Lord soothe Jai’s aching heart!

  18. Oh Jai… I’m so sorry. The BMT doctors are really a great team and very (very, very) knowledgeable about transplants. I praying daily for Allistaire, you and your family. And praying that the doctors find the absolutely best treatment for Allistaire.

  19. Jai–thoughts & prayers for you & Allistaire all day…including some chubby sticky ones from James 🙂
    Hoping & praying for good outcome of results & MD conference today…
    Lots of love from all the Plautzes 🙂

  20. Jai – Every time I read your blog I feel like you must surely be looking into my soul and pouring part of it out in your words. Oh, this pain! I weep with you. Lifting you in prayer. This “close, but so far away” thing really stinks! Sending hugs via our blogs. – Nicole

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