Hail Storms of Life


Saturday morning the ‘super-cell’ hail storm gave our house a pounding. Glass shattered all over me as 10 of our house windows were pelted by thousands of baseball and golf ball size hail in less than 8 minutes. Our new roof was destroyed. Our cars in the driveway are undrivable and have to be towed away, one unsalvageable, here is to hoping the other car is….


After the storm, the kids and I (completely unharmed) assessed the damage. We walked in circles around the shards of glass scattered across our floor and the fractured roof tiles littering our yard. It was a slightly disastrous sight. Yet all I could repeat to myself was “this does not matter, this does not matter, this does not matter….”

It did not even register as a problem.

Because, really, in light of where I am standing, this is not a problem.

I just returned from California last week. Riding high off the phenomenal success of Rebecca’s Wish Zoo event, my sister’s family left Texas to head back to their home in California the Monday after. Three days later, I received a phone call from my sister that was difficult to interpret through her shaking voice.

Caleb has cancer.

My 13-year-old nephew has cancer.

An aggressive form of leukemia that has spread to Caleb’s spine and a solid organ.

I immediately got on a plane to fly to California. Attempting to alleviate an iota of my sister’s suffering.

One mother in a hospital to another. One mother of a seriously ill child to another. One mother trying to grasp an unwelcome turn in life to another.

I am no stranger to comforting other mothers. But I never expected to be doing this with my beloved sister.


I was freshly home from this life-altering, life-draining experience as the hail storm hit. And so, as I was inspecting the fragmented damage, all my mind could focus on was Caleb. And Rebecca. And the things in life that do matter.

Broken cars, shattered windows, and decimated roofs do not phase me. They are a mere inconvenience; “for we brought nothing into the world, and we can take nothing out of it,” 1 Timothy 6:6.

The healing of broken bodies and souls are what matter.

And I am thankful for the unexpected miracle of a storm to remind me of that truth.

Lord, let me never forget what truly matters in this shattered world and “turn my heart toward Your statutes and not toward selfish gain. Turn my eyes away from worthless things,” Psalm 119:36-37.

You have prayed faithfully for our Rebecca and I humbly ask for prayers on behalf of our Caleb. You can follow his journey on caringbridge under Caleb Winter.

Love to each and every one of you,


AMAZING Hospital Spring Break 2019


Rebecca has experienced minor intestinal movement in the last few hours. A small but significant victory. And we are thankful. She is living off about a third of her nutritional needs for 7 days now, but without inflaming her liver more, we have no other options at this time. We pray her body will begin to accept full intestinal feeds through her tube with minimal pain very soon.

I expected to be out of the hospital by Spring Break.

In case you were wanting a profound life lesson, never set expectations. NEVER.

I wanted to be home with all my children when the boys were off school where we could relax, heal and recover as a family. This will be the boys’ last school break until the second week of June.

My mind decided we were going home, but Rebecca’s body had other plans….

I threw myself a stupendously grand pity party last weekend for about 3 and a half minutes. I wanted it to be a whole lot longer than 3 and a half minutes, a WHOLE LOT LONGER. But in the middle of my rant to Brian, my husband had the audacity to interrupt me and remind me of all the good things that happened that day???!!!

You know, kind of like my unexpected miracles.

And I wanted to hurt this man I was eternally bound to. Seriously hurt him. And if he was not twice my size and we were not in the middle of the hospital hallway, I might have actually attempted something very, very bad like a throat punch or something…..Did I just write that?

I thought, of all the people in the world, did I not deserve to rant more than 3 and a half full minutes? But alas, the thought of getting arrested by the two correction facility officers standing in front of a sick inmate’s hospital room a few doors down from me, deterred me from being rash. Besides, orange is definitely not my color. Once I calmed my not-so-Christian thoughts about this man I pledged to cherish for life, I realized Brian was ultimately correct (don’t tell him I said that).

The hard truth of the matter was, the Taylor family was going to be in this hospital over Spring Break whether we liked it or not. I might as well start finding good in this undesirable situation.

In preparing for a better attitude, the first thing I asked myself was, in my history of Spring Breaks, how different could this Spring Break possibly be? So, I made a list comparing my college-era Spring Break to my hospital-era Spring Break and surprisingly found both involved:

  1.  A severe lack of sleep. These similarities are emulated to the point where people keep interrupting your sleep, rotating in and out of your room all night long. Based upon medical/social schedules.
  2.  Certain people surrounding you who may or may not be in all their right senses – aka my daughter on drugs/spring breakers on who knows what?
  3.  Lodging in an overly small room with sheets and bedding that are not your own while sharing a minuscule bathroom with other women vying for tiny counter-top space.
  4.  Eating take-out food for every meal. Come to think of it, the take-out food my friends bring me in the hospital now is far better than what I filled myself with in college…
  5.  Entertaining large groups of people at one time from the overly small lodging room. We have crammed 16 people in our hospital room at once during this stay and my college days were no different.
  6. Enjoying different views. It is not everyday someone gets the pleasure of viewing ‘University   Hos i al‘ (that is not a typo – the “p” and “t” in the large sign do not work) in broken lights across our hospital room window. Something about a hospital attempting to fix broken bodies but not fixing the broken lights on its main sign (for years) exudes great confidence in an establishment…. Sure, a Spring Break view can be more aesthetically pleasing, but I guarantee it never produced as much humor as our broken-lighted sign.

The list goes on (actually, it pretty much stops there), but you get the picture. Back in the day we thought our Spring Break experience growing up was AMAZING (we probably used that word a million times to emphasize how AMAZING our experience was). We built life-long memories we now look fondly upon. So, with that concept in mind, the Taylor Family decided to go forth and form our own AMAZING Spring Break memories from University Hospital.

This included a t-shirt.



Because everyone knows that every AMAZING Spring Break experience has to have a commemorative t-shirt. We made “Spring Break 2019 – University Hospital” t-shirts to wear and be distributed to visitors this week in the hospital. We also added a few memorable quotes from this hospital stay (most of my memorable quotes were banned as Rebecca informed me they were not appropriate. Quotes like, “What do you mean medical school doesn’t teach math??” a statement I repeated many times after correcting my third resident in 24 hours on massive dosing mistakes. My daughter on drugs is a far wiser human than I am as she reminded me these same residents are still immensely involved in her medical care and might possibly be offended by seeing that quote paraded down the halls of this hospital, immortalized on the back of a t-shirt.



So here is to your own AMAZING Spring Break, wherever you find yourself. Grow where you are planted. Enjoy this moment, from this particular location, and this particular view. Right now. This is your life. Your very own unexpected miracle.

Thank you Lord.

Love to each and every one of you,


Raising Hospital Boys


This week has gone by fast and furiously. Rebecca’s procedure on Monday verified her intestinal inflammatory process of the colon and scar tissue adhesions in her upper intestines. The intestinal feeding tube the doctors placed curled in Rebecca’s mouth during recovery and the nurse and I had to pull the whole tube. Not my very favorite thing in the world to do.

Because of this, on Wednesday, Rebecca underwent her 4th anesthesia procedure this hospital stay to replace her feeding tube, one that ended deep within her intestines. Rebecca is missing a large portion of her small intestines, so the exact placement of the tube looks different due to her anatomy. The intent of the feeding tube is to start nutrition into Rebecca’s gut. This allows us to start weaning the TPN nutrition running through her heart as TPN is very hard on the liver. Rebecca’s liver has quadrupled in enzymes since starting TPN – not a good thing. Protecting Rebecca’s liver is paramount as it is her super organ housing her pancreatic islet cells.

Yesterday we started ‘trickle’ feeds into her intestines and to our great surprise, Rebecca was able to tolerate them without too many repercussions. Hallelujah!!  Our goal for today is to slightly increase the rate and pray hard she accepts the increment. To help her tolerate the overall scar-tissue pain association, Rebecca is on a steady narcotic diet of Fentanyl and Dilaudid.

Ladies and gentlemen, we are back to the big guns. Bless.


Raising boys from the hospital is a challenge. Don’t let anyone tell you differently. Although I highly doubt anyone would….

A conversation between Nicholas and I after we had seen each other only 15 minutes the entire week went a little like this:

Me (picture mom-mode lecture tone): Nicholas, I don’t understand why you have not finished your GT project? You should have sent out your letter of information weeks ago. You must learn to be responsible. If you don’t learn now, you will NEVER learn….

Nicholas (picture frustration mixed with exasperation tone): I am really sorry Mom, but I needed the email addresses!

Me: Well, we have the email addresses on the computer. They are simple to pull up. Please tell me why is this a such a problem?

Nicholas: Because the computer is at the hospital and I am at home.

Point = Nicholas

So, Nicholas’ very important Ronald McDonald House Meal project is now around 3 weeks delayed because we have been in the hospital approximately, well, 3 weeks…. If any of my readers have an interest in delivering a meal to the needy families of the Ronald McDonald House this month – please let me know. A really sweet 8th grader and his hospital-residing mother will be over-the-moon appreciative (how is that for a shameless plug??).

Aunt Jenny, aka craft genius, created a fish-inhabiting science hat project for Alexander from the hospital room with shredded remnants scattered across the industrial tile floor. Had the science hat been left to mom, it would have resembled an inside-out baseball cap with a torn notebook paper taped to the front letting people know what it was supposed to be. Thank you Lord for Aunt Jenny.

Tennis tournaments are watched via FaceTime where I scream for Nicholas so loud I startle the other patients into thinking some type of tortuous procedure must be occurring in our room.

Sweet notes are written by the boys before school mornings and sent by phone so we can know they are thinking of us while we are apart.

Yes, raising boys from the hospital is a challenge.

But loving these boys is super easy.

Thank you Lord, for my Nicholas and Alexander – whether together or apart – you are my unexpected miracle.



Hospital Challenge


Rebecca’s procedure was very difficult for the vascular team, but successful. She has 2 lines running, one in each arm and is being fed through her heart at full nutrition while we are continuing to work on her obstruction in the intestines. Her pain is intense and we would appreciate prayers for relief.

We are trying to focus on the positive, so Rebecca has come up with a challenge while she is in the hospital! She is very worried people are going to forget about the Zoo fundraiser (which I have assured her is not possible!). She wants to sell 250 tickets to Wild for Wishes from the hospital room.

Yes, you read that correctly – 250!

How is this possible??

Go online and purchase tickets on the website below. ALL proceeds go toward helping children with pancreas disease per Rebecca’s Wish. If you cannot attend, you can purchase a ticket to sponsor a pancreas family to attend the event.

Rebecca will check throughout her stay to see updates on ticket sales.

Let’s have some fun and make some unexpected miracles happen for sick children from Rebecca’s hospital bed!!



Borrowing Trouble


Here is a truncated update on Rebecca:

Rebecca’s intestines show another blockage even after only drinking liquids since the blockage we fixed last week. We are working on the second blockage but because she has lost over 15 pounds, the decision was made to give her 1 and a half times IV fluid maintenance as well as full TPN feeds through her heart. This requires surgery tomorrow morning by a specialized team that will go into Rebecca’s convoluted and damaged veins to run a line into her heart.

For those who are new following our journey, I will give you a brief synopsis of my thoughts on this decision:

TPN and PICC lines = the bane of Rebecca’s existence.

I would rather drink poison than watch my child get another PICC line. Maybe not a deadly poison, but at the very least, a non-lethal form of poison…

The last 5 central lines Rebecca received have all equated to massive and life-threatening blood clots. While other teenagers develop pimples, Rebecca develops clots. And once she has a blood clot, we enter the black-hole of hospital stays. This is an affectionate term we use when the over-riding problem you are facing has nothing to do with the problem you entered the hospital for. We would come into the hospital for pancreatitis and end up with vascular damage, anti-coagulant shots, constant monitoring of blood levels, and massive hemorrhages requiring transfusions…


I know my mind is jumping ahead of itself because Rebecca absolutely does NOT have a blood clot right now and may not even develop a blood clot with her soon-to-be new central line. My Grandmother called this line of worry, “borrowing trouble”. But the fear factor of Rebecca getting a clot is pervasive through my thoughts and mind.

And then I realize how utterly ludicrous my thoughts actually are….

My fear for a future ‘potential’ problem is robbing me of my present joy.

I am wasting precious energy on a condition that may not ever manifest?? And I can say with one hundred percent accuracy that a mother with a sick child in a hospital does not have a single ounce of energy to waste. Not even a sixteenth of an ounce of energy to waste.

“Therefore, do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own,” Matthew 6:34.

So, I will not worry about tomorrow because God knows the today I am looking at has more than enough trouble of its own. Thank you Lord for this unexpectedly miraculous truth.

And thank each of you for your constant prayers on our behalf.



Time to Wash My Face


We tried a drinking trial after Rebecca was on complete bowel rest for over 40 hours.

It was disastrous.

My daughter ended up curling herself into her mother’s arms weeping in pain. And I rocked this 5-foot 8-inch child of mine in a futile attempt to alleviate a fraction of her agony.

This is not the life I wanted for my child.

This is not the life any parent wants for their child.

I feel a burden pressed firmly upon my soul witnessing my daughter suffer. A burden heavy enough to crush any life worthy of living. A burden I was not meant to carry….

John Piper once said, “weep deeply over the life you hoped would be. Grieve the losses. Then wash your face. Trust God. And embrace the life you have.”

I weep deeply over my daughter’s pain, her relentless disease attacking her fragile and broken body. I weep over Rebecca’s missing 5 organs and twisted spine that prevents her lungs from breathing deep, unhindered breaths of air. I grieve the loss of a normal childhood for Rebecca and my abandoned boys. I grieve lost time as a family united under the same roof and crises-free moments my husband and I once had the luxury of experiencing. I grieve the loss of a happy and scheduled home in which plans, and vacations are not consistently cancelled last minute, and money does not flow like water into the cavernous abyss labeled medical expenses.

I could drown in such loss. Weighed by my burdens, crushed by unrealized dreams of how my life would and should look….

But once I have wept, grieved and accepted my losses, I have a choice to make.

And I choose to trust God.

That very same God who created me. The God who loves me. The God who turns unthinkable sorrow into unimaginable beauty.

It is time to get up from my grief-stricken pose and wash my face clean of salt-stained tears.

Time to embrace the life that I have, not the life I envisioned: A life filled with compassionate children overflowing with love, their very compassion birthed from exposure to hardship. A life filled with the transformation of lives through my broken daughter’s Wish. A life filled with great meaning and purpose, never wasting a single treasured moment. A life filled with unexpected miracles. A life I am honored to be a part of…

Thank you Lord.

Psalm 28:7, “The Lord is my strength and my shield; in Him my heart trusts, and I am helped; my heart exults, and with my song I give thanks to Him.”


For I AM with you

We worship a God of miracles. And I have witnessed many of those miracles – some dramatically ‘large’, some unassumingly ‘small’ – all faith-sustaining. I find it extraordinarily rare though, to see a miracle answered with immediate results???

Something like:

Me – “God, I need such-and-such.”

God – “Well sure Christyn, here you go!”

And poof!! The once-unattainable miracle appears before my eyes.

Like I said, rare. The kind of rare I witnessed last week….

A child with chronic pancreatitis was hospitalized in San Antonio from out of town. Her body revolting in her diseased state while waiting for desperately needed treatment. I received a call from the hospital informing me of this child’s precarious circumstance. So, Rebecca and I headed to the medical center, armed with Rebecca’s Wish information and a card containing our Adopt-A-Family $1000.00 check.

As I opened the door to the patient’s hospital room, a vision of my life a mere few years ago flashed before me: The eerily silent room clothed in inky shades of dark, silent and dark by necessity to erase all interference of outside stimulation. An exhausted mother resting on a make-shift couch bed with cheap, itchy, overly-bleached white hospital blankets haphazardly thrown across the stiff plastic, faded orange cushion. The 12-year-old girl curled in a fetal ball from excruciating after-procedure pain, hooked to an IV pump coursing sanity-saving narcotics through her veins.

Yes, this was my life. The same room, same silence, same darkness, same blankets, same couch, same IV pump, same narcotics, same exhaustion, same pain cycle over and over and over…..

PTSD waves rippled through my body and instinctively, my legs refused to move forward. Why in the ever-loving world would I walk back into a scene I prayed for years to be delivered from???  I assuaged my rising panic only by repeating to myself, “this is not about you, this is not about you, this is not about you, this is about the hurting family in front of you, this is not about you…”

Because who better to understand a mother’s pain than a mother who shares the same pain?

So with new-found confidence, I marched in the room and landed on one of the itchy blankets right next to the frazzled mother. The mother who used to be me.

Trying to lesson my assault on the silence barrier, I quietly explained to the mother about our charity. How Rebecca’s Wish started, and its purpose. I informed her she was now a part of a family who understands her, who supports her, who prays for her and above all – who loves her.

With an all-familiar look of ‘post-child’s-pancreas-procedure-shock”, she whispered a thank-you and nodded her head as I handed her our card.

As Rebecca and I prepared to leave, I jolted upright as a sudden cry shattered the silence. Turning quickly, I witnessed the mother hunched over wailing, her chest heaving with ear-piercing sobs. It was alarming and heartbreaking at the same time. I rushed back down upon the tangled, itchy blankets and wrapped my arms around this hurting woman’s weary body. For eight full minutes, I held this stranger in my arms. For eight full minutes, I let her tears stain my shoulder. For eight full minutes, she unleashed emotions while repeating, “you have no idea, you have no idea…”

As her body calmed, she told her story:

Her daughter was diagnosed with chronic pancreatitis at the age of 4. And although the family lived hours away, San Antonio was their closest hope for treatment. For years they made the trek back and forth from emergency room to emergency room, by car or by ambulance. Their daughter had been in remission until last week, when the child’s undeniable pancreas pain hit with full-force. The mother could not miss work – the father could not miss work and yet they could no longer wait to treat this relentless disease. So, the mother drove her daughter to San Antonio for yet another procedure, yet another set-back.

5 minutes before we walked into her room she had a conversation with her husband and told him they were out of money.

5 minutes before we walked into her room she said she needed an advance on her salary to pay for the expenses to get her daughter home.

5 minutes before we walked into her room her husband said they needed to pray to God for a miracle.

And 5 minutes later complete strangers walked into her room with an unexpected miracle of $1000.00.

Rebecca and I had no plans to be at the hospital that day, much less that night, much less that hour, much less the 5 minutes God happened to orchestrate the delivery of His miracle.

This family prayed in their desperation and God found a way to answer that prayer.


And our faith was strengthened.

Yes, my God is still faithful even if strangers do not walk into a room delivering $1000 a mere 5 minutes after asking.

But there was no denying in this circumstance that God was making a profound statement to this family by breaking the silence barrier with a loud shout declaring, “I hear your cries. You are not alone. For I AM with you. Through your pain, through your disease-ridden body, through your heartache, and even through your financial crises – I AM with you.”

Thank you Lord, for that unexpectedly miraculous reminder.

“So do not fear, for I am with you; do not be dismayed, for I am your God. I will strengthen you and help you; I will uphold you with my righteous right hand,” Isaiah 41:10.



IMG_20160212_085918So, Rebecca is back in the hospital. Actually, she has been ‘back’ in the hospital since last Saturday, I was too busy to update.

Just in case you were ever in doubt:

Hospitals = NO EXTRA TIME.

The iron infusion Rebecca was hospitalized for almost two weeks ago triggered an autoimmune relapse. Rebecca’s autoimmune disease has inflamed her brain-stem which regulates her heart and oxygen rate. Her vitals result in bottomed-out oxygen saturation levels and extreme heart rates. This makes it difficult, if not impossible, for Rebecca to walk and even sit up at times.

In short, this is the same issue Rebecca dealt with last February that hospitalized her for 16 days and the same issue she was placed on a BiPAP machine in 2014.

Our goal this round is to quiet Rebecca’s immune system by loading her with large doses of steroids while giving her supplemental IV bolus support and oxygen. Now that we (think we) know what we are dealing with, we pray to reverse Rebecca’s symptoms in a timely fashion without incurring more damage.

Wow. I just crammed an incredible amount of medical information in a few sentences. I might be a word genius…

Sometimes, not all of the time, but sometimes I get overwhelmed.

Shocking, I know. Especially considering my life is so calm and uneventful.

When I feel pressure mounting from the barrage of confusing specialists’ opinions, to the barrage of confusing lab results, to the barrage of confusing procedure reports; while looking at my child in a hospital bed for the 1,100th plus day in her life, still in pain and still struggling to comprehend her endless ailments, I indeed, feel overwhelmed.

Again, shocking. I know.

At times like this, it was as if Paul read my mind while writing 2 Corinthians 1:8-9, “we were under great pressure, far beyond our ability to endure, so that we despaired even of life. Indeed, in our hearts we felt the sentence of death.”

  • Under great pressure – CHECK.
  • Far beyond my ability to endure – CHECK.
  • Despair of life – CHECK.
  • Felt the sentence of death – CHECK. CHECK.

There will be times in our lives when we are overwhelmed. Overwhelmed to the point of despair. Overwhelmed to the point of death:

A broken marriage…

Severe loss of income…

The death of a child…

A terminal illness…

But verse 9 ends with, “this happened that we might not rely on ourselves but on God…” Because, in our desperation, we were never meant to carry the burden of our crises.

We were meant to rely on God.

Years into my hospital existence, I noticed something about myself in moments of complete and utter ‘whelm’. Without consciously thinking, I place my hands against my chest and fly them, ever so slightly, toward the sky. Not to the point where anyone would think I was crazy (although that statement is debatable), but just enough to give merit to my action.

A humble attempt at relieving pressure by casting my cares upon the Lord.

The greater the burden I feel, the more my hands repeatedly reach for the sky. Today is one of those days where my hands are weary…

This unremarkable gesture became profoundly remarkable to my soul. A simple reminder to rely on a God who knows far more about my child’s condition than the entire said barrage of specialists, lab interpreters, and procedure reports combined.  My unexpected miracle.

Thank you Lord.

“Cast your anxiety on Him because He cares for you,” 1 Peter 5:7.

Thanksgiving Thoughts From a Teenager

Happy happy Thanksgiving from our family to yours. Rebecca wrote these words I wanted to share on the day of all days to be grateful.

We love each and every one of you,

My first Thanksgiving in a hospital happened when I was nine-years old.

The longed-for holiday arrived after a complicated procedure, and my body refused to heal. My day was spent resting while watching the Macy’s Day Parade, and then a visit to all of the nurses on staff, where I handed out a few tediously detailed, handmade cards coated in piles of glitter. Cards I spent hours making while propped up on a pillow and covered in heat packs to ease the pain.

My mom worked tirelessly to help me with the cards and miraculously managed to convince the doctors to check me out of the hospital very late at night.

After packing up our home-away-from-home, complete with multicolored pillows, wall stickers, and welcome signs, we drove home where I was able to spend the night laying on the couch and watching movies with family.

That year, on that Thanksgiving, I realized I had so much more to be thankful for than things on the surface. Sure, I have spent most of my life sick and hospitalized. I miss school, and I am often too weak to hang out with friends. But because of my life, I am able to appreciate the out-of-the-ordinary.

I have two families.  Not only do I have my brothers, parents, grandparents, aunts, and uncles to love, but I also have another family with my fantastic teams of nurses, technicians, and doctors. They treat me like a daughter, something that meant so much more to me than they could have possibly realized. And so, first off, on this Thanksgiving, I am thankful for all the medical providers out there who have helped to keep me alive all these years.

Secondly, I am thankful for my disease. Without it, I would not be who I am today.

I would not be able to stand up for other children who have pediatric pancreatitis or any other form of disability.

I would not have the platform that I have today, where I  am working to change the world one  life at a time.

I would not trade places with anyone else in the world.

Because of my pediatric pancreatitis, I can hold a hurting child in my arms and tell them I understand, while they know someone loves them and wants to take care of them.

So this Thanksgiving, when giving thanks for the good, remember the bad, because the storms in life make us who we are and teach us to truly appreciate everything around us.

Written by Rebecca Taylor