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.
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:
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’.
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,