Why, God?

I cannot deny that today has been hard on Rebecca. She has had far worse days of pain, but not in a while.

Rebecca had a 13-hour infusion today due to the lost blood during her procedure yesterday. We now know the AVMs found in her intestines were contributing to her continual blood loss. They were treated by cauterization and will be re-treated during her next procedure.

It also appears as though Rebecca has a blockage/stricture further down in her intestines. The doctors went as far as possible with the scope but will need a longer device to reach the ‘no-man’s land’ of lower intestines. So, we will patiently wait to address this issue when the appropriate device can be acquired and after Rebecca’s 6 to 12-week recovery.

Many have asked what is wrapped around Rebecca’s back in her pictures posted. On July 4th, Rebecca proceeded to fracture her back sitting on a tube in the water at my parent’s lake home. This prompted a bone scan which showed Rebecca’s bone mass is indeed, quite sub-par. Years of malnutrition and required medications such as steroids have wreaked havoc on my growing girl’s body. We are now challenged with what to do about this new complication?

To make Rebecca’s spinal situation worse, we received a surprise this past spring discovering Rebecca suffers from a serious case of scoliosis. Scoliosis that worsened due to her growth spurt of 7 ½ inches in less than 4 months post-transplant. And by a ‘surprise’, the word denial might be a bit more accurate.

The conversation with Rebecca’s pulmonologist after an X-ray to check her lungs went a little like this:

Pulmonologist – “Rebecca’s scoliosis has significantly worsened per her X-ray.”

Me – “What scoliosis?”

Pulmonologist – “Your child Rebecca’s scoliosis. We have compared her X-rays from previous hospital visits and her curve is significantly worse with a rotation forming in her spine.”

Me – “You must have the wrong child. Rebecca does not have scoliosis.”

Pulmonologist – “There is only one Rebecca Taylor in this hospital that has her pancreas removed. In fact, there is only one Rebecca Taylor in the WORLD who has her pancreas removed. I am pretty sure I have the right child.”

Me – “Maybe they placed the wrong name on this film and then the machine proceeded in erasing multiple organs on this other child’s film. You know computers can do strange things these days…”

Pulmonologist – Silence. (I am fairly certain she was using this silence as a chance to decide which psychiatrist to send to the room and evaluate me.)

Although I knew when looking at my daughter’s back she definitely had a curve, it took an additional full scan and an orthopedic spine surgeon to convince me that Rebecca did indeed have another major anatomical problem to add to her already massive list.

Bless.

IMG_8796

Rebecca’s scoliosis curve is over 40% and is now causing reduced air flow in her lungs. At this point, there is little to be done except stabilize her with a back brace that will not fix her curve but prayerfully keep it from getting worse. Major spine surgery in Rebecca’s fragile body is not an option right now.

In the madness of the past 8 and a half years, it dawned on me we never thought to check the ‘basics’ in Rebecca’s anatomy like eyes, ears and spine. We know every detail possible about how my child’s heart, lungs and kidneys operate, but have no idea if she can see the giant alphabet wall-chart or hear the soft ‘ping’ from padded earphones. And of course, we completely bypassed the touch-your-toes spine check in school.

This is the point where I board the bitterness train…. bitterness that rides in my soul until it runs through my mind and crashes from my mouth in a hot mix of anger and sorrow:

“How is this fair?”

“How is it my daughter has one more massive issue that has nothing to do with the umpteen diseases she already suffers from?”

“What if I caught this sooner?”

“How much more can this child possibly take?”

And then I ask the question at the heart of it all:

“Why, God?”

Like Job-I demand, plead, and bargain for an answer I never receive.

And then I am the one silent. In the presence of the I AM.

Do I have to know the ‘why’ to trust in this Lord?

If the definition of faith is a “firm belief in something for which there is no proof”, then I have no right to demand proof while claiming faith.

My faith must come without the prerequisite of my understanding.

My faith must come without the knowledge of my ‘why’…

And so I ask the ‘whys’.

And then I give up the ‘whys’.

And trust.

Because this God who “gave dominion over the earth” and “endowed the heart with wisdom” and created the exquisite soul of Rebecca Taylor, is a God who deserves my unexpectedly miraculous faith. Despite the unanswered ‘whys’.

Thank you Lord.

“Therefore we do not lose heart. Though outwardly we are wasting away, yet inwardly we are being renewed day by day. For our light and momentary troubles are achieving for us an eternal glory that far outweighs them all. So we fix our eyes not on what is seen, but on what is unseen, since what is seen is temporary, but what is unseen is eternal, 2 Corinthians” 4:16-18.

Love to each and every one of you,

Christyn

 

27 thoughts on “Why, God?

  1. Beautiful, faith-filled writing my daughter.
    God is in you!
    Praying for our precious Rebecca.

    Dr. B. Don Russell
    Distinguished Professor
    Texas A&M University
    979-845-7912 (office)
    979-229-8963 (Cell)
    Sent from iPhone

    Liked by 1 person

  2. Love you my friend. I offer no words, other than this because, as you know, they are insufficient. May you feel His Presence and Peace in the midst of pain. Love you so very much.

    Liked by 1 person

  3. I have a statement on a mural in ou house that reminds me of where I believe you find yourself coming back to after the “WHYs”. Da Lifnei Mi Attah Omed ~ know before whom you stand.

    As I recall this is a reference to the first part of Ecclesiastes 5. Most times i read this as a reminder of the promise of God’s faithfulness, but at other times as a gentle prompting from the Spirit when my human frailties overwhelm me.

    Cathie and I are praying for Rebecca and all of your family.
    Daniel

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  4. Christyn…..I truly don’t kmow what to say but just WOW!!!……it’s hard to come up with words that express the feelings and just overall awe at the way Rebecca has handled this whole situation which truly seems sureal…not to mention your required attention and stress and the whole family. I pray God will give you all amazing strength and endurance….you all truly amaze me.
    God be with you during these difficult times.
    Much love your way to Rebecca and the whole family…..RO

    Liked by 1 person

    1. Meeting you this year has been such a highlight Ro. We have your painting to constantly remind us of Rebecca’s journey and the light of God at the end of the path. Thank you for using your gift from the Lord to bring beauty to our lives. We love you.

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  5. Your writings are so good. I don’t want to read them because I don’t want to read about another medical issue arising in Rebecca or that you are broken hearted. Then, I keep reading and I am inspired by your faith and I pray and love Him all the more. Standing in the gap for you today. Oh my heart.

    Liked by 1 person

    1. I agree with Brandi…. so sorry to hear another problem to deal with… but amazed to continue reading and see, hear and feel your strength and faith. What a testament you are to others as you make this journey. I was told by a therapist. … ” you have to live the questions”… may you continue to live the whys and trust GOD’S big picture plan. Praying GOD’S continued blessings on Rebecca and ya’lls family.

      Liked by 1 person

  6. Thank you for sharing your hard days and hard thoughts. This is why I’m bringing my neighbor who does not know Jesus to your Wednesday night class. Your light shines so brightly. Praying hard for this new (to us) development.

    Liked by 1 person

  7. Dear Christyn,
    I have never met you or precious Rebecca but want you to know that I pray for her every day and have for years. I am saddened by this new medical revelation but I join you in faith and trust in our incredible, all knowing, all loving Heavenly Father! I will continue to pray!

    Liked by 1 person

  8. I too have never met you,but I am humbled by your undying faith. Please know that we all pray for Rebecca and your family. Thank you for sharing your soul and spirit about something so private so that others realize that everything must be left to the Lord. God bless.

    Liked by 1 person

  9. Your words are thoughts are so uplifting as I find myself riding the bitterness train in my own life due to life’s struggles. You brought tears to my eyes and a deep breath into my spirit. I needed that to face this day. Prayers for your/His precious Rebecca ❤️

    Liked by 1 person

    1. I find it to be an easy train to ride when life doesn’t deliver as I hoped. I am praying for YOU now and thankful God brought us together through our journeys.

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  10. Sending prayers of strength and love to you all during this new set of obstacles. It is truly easy to jump on the bitterness train, yet you find a way to jump off and find the light. THAT is always the unexpected miracle.
    God truly has blessed Rebecca to have you and her family for full support and love during her darkest times.
    Always praying for sweet Rebecca and you all.
    “He gives power to the weak and strength to the powerless”. Isaiah 40:29

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  11. Praying so much for our dear Rebecca. We love y’all and Rebecca. Whereas I don’t know the Lord’s plans or the why’s, in fact I often have found myself asking the same of him, I too am silenced in this same conclusion.

    We continue to pray and seek the Lord in this with y’all.

    Love from Randy and Autumn Bauder

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  12. Oh my. Yes, why God?

    Christyn, My heart pours out to you and Rebecca. I hear your struggles go from struggle to another and it amazes me how your faith in God helps you triumph through it all. To hear of this unexpected medical issue saddens so many hearts that love you and Rebecca so much. You both are a living testimony to how we should live out our faith in the One who is the author of it. I’ve had the blessing to of gotten to you Christyn, not just from bible study classes but through your family’s journeys in life because YOU’VE CARED ENOUGH FOR US to share it. So we can learn from you in how to still believe in a God who died on the cross for us even when we are in the mist of our own pain. (That’s my unexpected miracle). Our God created such an amazing beautiful mother to this beautiful miracle child. A miracle she is to live through all this pain and still believe God is always with her and has never left her. You’ve set a phenomenal example to her and us. God created a wonderful friend to many so we can see how Christ lives in you. You have set the bar of how to live by faith. I love you and I am so joyful to have you as a mentor, a teacher, a friend and most importantly my sister in Christ! You’ve inspire me to live by faith and faith alone in Christ! God blessed you and your family and I’m always praying for you all.

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