Educated Guessing

Tomorrow morning, we will venture into new territory.

After Rebecca’s diagnosis involving her shut-down colon, Rebecca’s GI doctor tested her for an obscure autoimmune disease. Of the hundreds of children this doctor tested over the years, Rebecca was the only one positive. Her antibody diagnosis is GAD (glutamic acid decarboxylase) and it primarily affects the neurological system. We now know, this is the cause of Rebecca’s brain stem problems involving her lung and heart regulation and her stroke. Even her pancreatic issues can be at least partially attributed to this antibody. Rebecca’s profound neurological loss in her colon is now assumed to be the GAD antibody attacking yet another organ in her 5 organ-less body while the muscular portion of Rebecca’s colon is most likely affected by a tremendous amount of scar tissue. And we may still be missing other pieces of the puzzle.

What we do know: the GAD antibody is definitively causing destruction in Rebecca’s body, with or without added factors.

What we do not know: whether other obscure autoimmune/metabolic factors are involved in Rebecca’s body. GAD can often be paired with another systemic immune diseases.

Knowledge in a disease can bring great power but also great fear. We daily fight against the fear-factor.

So, what do we do with this critical piece of information? Good question. Dozens of specialists spread across the nation in multiple major hospitals have asked this same question on behalf of Rebecca the last couple of months. They have poured themselves into researching this little-known antibody because there are no studies to be found in pediatrics and we only have a couple of studies to examine in the adult population.

After countless meetings, conference calls, appointments, consultations nation-wide, tests and vials of blood, an experimental decision was made:

Rebecca will undergo IVIG (Intravenous Immunoglobulin) treatment in the hospital a minimum of one week of every month. The infusions will be delivered 5 days a week, 8 hours a day. This will continue (assuming Rebecca’s tolerance) until the month of May in which we will then re-test Rebecca’s colon and determine if any motility has returned. If her motility continues to be non-existent, Rebecca will undergo yet another major, life-threatening intestinal surgery.

I could give you a long-list of massive complications with this infusion treatment, but I feel you could look that up with a few clicks on Google. I will boil down our top concerns unique to Rebecca for specific prayer requests:

  1. IVIG infusions are black-boxed in the medical world for thrombosis, in particular, pulmonary embolisms and strokes. Unfortunately, Rebecca has acquired blood clot disorders which make her even more prone to clotting. Her last iron infusion with a mere IV formed a clot across her entire forearm. We are asking for prayers that with blood thinners on board, Rebecca will not develop any clots during her infusions.

 

  1. Rebecca’s colon is what they call a mega-colon (Rebecca affectionately laughs when she hears this term because she states it is the first time she has a disease that sounds like a super-hero disease as opposed to her un-fun, nearly un-pronounceable other afflictions. In fact, we will be engaged in a very serious conversation with doctors and when they say the word ‘mega-colon’, Rebecca will laugh out-loud, unable to contain herself, which in turn causes me to laugh while the doctors are looking at us like we have lost our minds. Yes, we have lost our minds and yes, we have a very strange sense of humor living in this maddening medical world….). Despite our laughs, a mega-colon is a very serious problem. Waiting these next few months on treatment and not directly removing the colon places Rebecca at a high risk for toxicity. A toxic colon without a spleen is a life-threatening crisis. Rebecca is also high-risk for torsion of her colon (twisting that causes a severe blockage requiring immediate surgery in a mega-colon state). We are asking for prayers against these complications.

 

  1. We also humbly ask for prayers for our emotional spirits. Rebecca will miss even more life outside of the hospital including school (which she holds dear), and time with friends and family. The boys will miss their mother and sister a minimum of a quarter of every month – all the way from milestone events like watching football games and getting ready for school dances to everyday events like having a parent home to help with their homework and share a meal. Brian will miss time with his girls and constantly fluctuating between hospital life, work life and home life. And I will miss my family being whole again….

The phrase I coined during this new medical frontier is “doing our best to make an educated guess”. An educated guess this treatment will not harm Rebecca. An educated guess this treatment will help Rebecca’s colon. An educated guess Rebecca’s colon will hold steady during the months of treatment. And an educated guess Rebecca’s immune system will be healed….

But while the medical team and I are making our researched and educated guesses, our ever-knowing, omniscient Lord is in control. He will guide us and prepare the way for whatever future He has written. And that gives me immense peace, an unexpected miracle in the midst of my ‘guessing’.

Thank you Lord.

“Then He placed His right hand on me and said: Do not be afraid. I am the First and the Last,” Revelation 1:17.

Your prayers keep us afloat during these rough waters.

Love to each and every one of you,

Christyn

 

Mr. Ken

We lost a pillar of the earth this week. One of the finest men I have, and will ever have the privilege to know, Ken Martin, passed away this week. His life was honored in a ceremony today and so it seems fitting I honor him with words.

Mr. Ken, as I called him, was a second father to me and my siblings, loving us since birth. Poppa, as my children called him, was a second grandfather to Rebecca, Nicholas, and Alexander, and loved each of them since birth.

I could write for hours telling stories of this incredible stalwart of a man, but I will share just one. A story that symbolized the very spirit of Ken Martin. A little over a month ago the five Taylors went to my parents’ lake home at Camp Creek which is 3 cabins down from the Martins.

Camp Creek could tell the story of my childhood. Summers spent shuffling from cabin to cabin eating watermelon and jumping off docks. Winters spent around a campfire roasting smores and waiting for Mr. Ken to throw a pack of Black Cat fireworks where we would run screaming at the ear-piercing sound. July 4th and New Year’s Eve were celebrated with lawn chairs filled with our families facing the water watching my brother John Paul’s award-winning firework performance. The reflection of the multi-colored cascade of lights was mirrored in the waves while patriotic music blared through the speakers. Every Sunday we had ‘Camp Creek Church’ with our families singing songs of praise that echoed across the lake.

My life is intertwined with memories of Mr. Ken. Laughing, joking, praying, hugging, providing, and loving everyone in his path.

We went to Camp Creek last month to allow Rebecca’s body to rest before her arduous medical trip to Cincinnati. Mr. Ken was also there resting his own cancer-ridden body.

Camp Creek is a healing place.

Ms. Diane, Ken’s wife and every ounce a second parent to me as Mr. Ken, invited us to come to their cabin that Sunday night. A group from our hometown church was trekking to the lake to sing and pray over Mr. Ken. So, the five of us walked the well-beaten path between our cabins to sit in the back and sing songs of encouragement. Songs that brought me back to a simpler time. A time where disease and suffering were not a part of the two of our families’ everyday vocabulary.

At the end of our worship, the group asked to pray over Mr. Ken. He surprised everyone with a response of, “Not right now.” He then turned to our family and asked Rebecca to come up with him. He instructed the group to, “Please, pray for Rebecca first – not me.” Rebecca’s Poppa held her hand while Ms. Diane rested both her hands between two of her loved ones in need of a miracle. The image of the three of them, holding each other in prayer, is firmly etched in my mind and imprinted in my soul.

This was the epitome of who Mr. Ken was. Despite his broken body in desperate need of prayer, he thought of others first. Always.

I want a spirit like that.

I want a heart like that.

I want to love like that.

To love like Mr. Ken. To love like Jesus.

A couple of hours before Mr. Ken died, my mother, Rebecca, and I said our goodbyes. When Rebecca broke down telling Poppa how much she loved him and would miss him, he responded in typical Mr. Ken style. With a broken, oxygen-deprived voice he told Rebecca he loved her, and he would never stop praying for her. I know he is honoring that promise.

We will miss you Poppa until the day we reunite in heaven. Thank you for being an unexpected miracle to my entire family. We love you full power.

 

 

Before I die I want to….

We received fantastic news from Rebecca’s Cincinnati study:

Rebecca has motility in her stomach and small intestines!

Hallelujah!!

Although this does not change the severity of her immobile colon, it does allow us to finally start addressing this serious problem. Had the small intestines been immobile as well, the doctors said her medical situation would have been “hopeless” and they would be unable to pursue any options for Rebecca.

We are thankful for the gift of hope.

Attached is a picture of Rebecca at the art museum in Cincinnati before her hospitalized procedure. They had a wall where people could write their ultimate accomplishment before they die. Honestly, when I saw this wall with floor to ceiling writings of intimate revelations, I hurried past. The weight of our life-threatening situation pressed heavily upon me and I wanted to spare Rebecca any anguish upon forced thoughts of premature death. But my daughter stopped me, grabbed my cold and clammy palm, and said, “Mom, I need to write my wish.”

And so, with tears in my eyes, I watched Rebecca joyfully write her life’s goal:

Before I die I want to – “cure pancreatitis.”

Lord, please grant Rebecca the pure desire of her heart. That would be a true, unexpected miracle.

Love to each of you,

C

First Day…

Unexpected miracle = Rebecca going to her first week of school with her brothers!!

The flight home from Cincinnati was brutal. And when I say brutal, I mean brutal. I thought many times watching Rebecca curled up in tears and almost fainting from her wheelchair:

WHAT IN THE EVER-LOVING WORLD WERE WE THINKING???

But as Brian so eloquently stated, “A nuclear war wouldn’t have stopped Rebecca from going to school, much less stomach pain.”

Seeing Rebecca’s smile attending school after approximately 7 months of hiatus from illness, was worth all our insanity of returning home early.

Thank you Lord.

Rebecca = 11th grade

Nicholas = 9th grade

Alexander = 6th grade

***Nicholas has two sets of pictures- one from before school leaving at the crack of dawn, wearing athletic clothes for football and the second from after school.

By the way, Nicholas was dress-coded his first day of school because apparently, our high school does not allow shorts of ANY kind???

Do they realize we live in Texas?

In August?

In over 100 degree weather?

And cargo shorts to the knees cover more body parts than 95% of the ever-so-modest city of San Antonio?

Okay, enough of my rants. I will now invest in more jeans.

Love to each of you,

C

Cincinnati Bound

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Rebecca and I are in Cincinnati this week. No, we are not squeezing in one last vacation before school starts. No offense to the good old state of Ohio but if I had to pick a last-minute vacation, Cincinnati would not be my number one pick. Maybe it would make my top 75 (maybe), but most assuredly not number one. We are here on a medical trip. Shocker, I know. Rebecca felt seven major hospitals around the United States were not quite enough for a well-rounded medical experience, so we are adding an eighth, Cincinnati Children’s Hospital, to her ever-growing list.

I have withheld sharing medical information on Rebecca the last few months because somehow, if I did not speak it out-loud, or write it down, I could pretend it was not real. I merely experienced a bad dream or maybe a break from reality that was inevitable after all this time.

We are 3 months into a new diagnosis on Rebecca. After her 5 week hospital stay last spring with numerous colonic blockages, we scheduled a motility test at CHOSA hospital. The results were profound – total colonic pseudo-obstruction both muscularly and neurologically due to massive scar tissue and Rebecca’s autoimmune disease viciously attacking yet another organ.

Simplified: Rebecca’s colon no longer works and is not considered a viable organ in its current state.

During this motility test, the doctor informed us Rebecca’s colon needs to be removed and yet it is doubtful a surgeon in the United States can preform this procedure on Rebecca in her complex post-transplant state.

I was wholly unprepared to hear this diagnosis. It was as if my mind could not comprehend the words coming out of the doctor’s mouth. It sounded like a different language, a foreign dialect with harsh and jolting tones.

Usually, my ‘mom’ face is set, asking the complicated medical questions without a shred of emotion. Usually, I show no hint at the inner turmoil exploding in my heart. Usually, I reassure my anxious child with smiles and nods while she receives even more devastating news on her broken body.

But usual did not happen this time.

For the first time in 9 years and approximately 1,200 days of hospitalization, I walked out of the hospital room, abandoning my helpless child laying on the procedure table. I avoided her eyes during my abrupt exit, knowing the look of pain and confusion on her face would break me. If I could not wear the mask she was so accustomed to, I needed to escape before my guard came crashing down.

News of one more organ damaged beyond repair, one more organ that needed to be eradicated from my beautiful daughter’s body, and one more potential life-threatening, life-changing surgery was too much.

It was all too much.

So, I rushed out of the room, barely making it before I slid down the hospital hallway, knees to my face, weeping in front of all who passed. I was beyond caring what anyone thought. My raw emotions won over discretion and decorum. I did not have the luxury of waiting for a more ‘appropriate’ time and place. If God is everywhere, then the hospital hallway floor is as good of a place to cry out to Him as any other.

The week after Rebecca’s diagnosis, per our San Antonio doctor’s request, I flew without Rebecca to Cincinnati Children’s Hospital to meet with some of the best GI motility specialists and surgeons in the world. After our interviews, we came up with a few ‘possible’ plans due to Rebecca’s unique (to say the least) anatomy. Rebecca is already missing a large portion of her small intestines so removing her colon that is wrapped with scar tissue creates a near impossible medical situation.

This week, we are in Cincinnati Children’s hospital for round 2 of consultations (hematology, GI, immunology, endocrinology, etc.), small intestine motility testing, and anesthesia procedures. All with an end goal to evaluate Rebecca and see if she is a candidate for major surgery on yet another organ. Your prayers for this imperative week of testing are coveted. The procedures are very taxing and painful on Rebecca’s body.

I am asked how our family is handling this undesired medical revelation we received 3 months ago? I would answer truthfully by stating we lived the summer in equal states of distress, denial and hope. Some days distress won over, other days it was easier to pretend nothing was wrong, and then there were days when hope was in full-force. Similar to living with multiple personality disorders – I had no idea upon waking, which emotions would win for the day?

Bless.

But as long as there is a shred of hope – and there is always hope with Jesus, we will lift our eyes to the Lord as we pursue this twist in our journey. And pray for God to reveal His unexpected miracles along the way. Because all other ground really is sinking sand…

Thank you Lord.

My hope is built on nothing less

Than Jesus’ blood and righteousness

I dare not trust the sweetest frame

But wholly lean on Jesus’ name

 

When darkness hides His lovely face

I rest on His unchanging grace

In every high and stormy gale

My anchor holds within the veil

 

His oath His covenant, His blood

Support me in the whelming flood

When all around my soul gives way

He then is all my hope and stay

 

On Christ the solid Rock I stand

All other ground is sinking sand

All other ground is sinking sand

Edward Mote

Handicap Bullies

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After the unexpected hospital trip in Alabama, Rebecca proceeded to venture into what I like to call a ‘tour’ of San Antonio hospitals. Similar to the ever-so-popular tours of restaurants and homes other families thoroughly enjoy, the Taylor family specializes in tours of hospitals. Different doctors, different procedures and different scans necessitate this carousel of madness. CHOSA for a day, University hospital for 2 days, TX Diabetic Institute hospital for a day and then another trip to the ER for what turned out to be a large and painful blood clot formed from Rebecca’s infusion line. 4 different hospitals in 4 days, 5 different hospitals in a week. A new Rebecca record.

Bless.

We are compiling results this week for upcoming surgeries/procedures on Rebecca. I will update you as we have a plan.

I thought when Rebecca turned 16 that driving would be a nightmare. I was wrong, driving is not the nightmare, parking is. But it is not the kind of parking-nightmare you would imagine from a brand-new teenage driver. Rebecca has handicapped parking. Her handicapped parking is obvious for those who know of her medical situation, but not so much for others.

Yes, on Rebecca’s great days she is fully capable of walking from the back of a parking lot into her destination. But Rebecca’s endurance is sketchy at best. Sometimes she feels perfectly fine walking into a store and then loses breath by the end of her visit. Rebecca has a limited amount of energy each day and knowing when that said energy-level plummets, only God knows.

Therefore, in order to set our child up for success, the doctors insisted on handicapped parking. We use it when Brian carries Rebecca into a building, or when she can solely function in a wheelchair, or when Rebecca’s adrenal system is down and her pain levels are high. This is our way of maintaining as normal of a life as possible for a teenager missing 5 organs….

By the way, for any of you drivers in San Antonio that are reading this and thinking of moving cities with Rebecca on the road, do not fear, Rebecca NEVER drives with one ounce of narcotics or any other mind-altering drugs in her system. You are safe. No need to pack your bags.

So, Rebecca’s parking nightmare is not the physical action of her parking, but parking lot ‘bullies’ as I affectionately call them. I have provided a few examples of Rebecca’s typical encounters when she gets out of her car in a handicapped space:

The doubtful bully….

“Child, you look far too healthy to be using a handicap sign.”

The sarcastic bully….

“I sure hope you feel better soon, considering you are stealing a parking spot from the elderly in wheelchairs!”

The outright angry bully….

“How dare you take this space!! You selfish teenager!! You ought to be ashamed of yourself!”

After being accosted with various versions of this scenario, Rebecca was scared to get out her car for fear of more undesirable bullying. What was she to do? Explaining her complicated disease to complete strangers took far too long and emotionally drained Rebecca as she was forced to relive her medical drama multiple times a day. And quite frankly, most of these bullies would not listen to Rebecca anyway, they had set judgment against this ‘healthy’ looking teenager and were in no mood to listen to truth.

This scenario reached a boiling point until one day, as Rebecca was being accosted by an ignorant bystander once again, Rebecca decided she had quite enough of the screaming insults and took action.

Rebecca turned toward the volatile woman, slowly lifted her shirt and revealed her scars.

Rebecca’s abdomen with the mini-canyon dip running vertically down her trunk, the gaping hole that never healed from feeding tubes, the jagged edges of haphazard skin that formed from numerous central lines, and the straight-line incisions littering her young skin from too many surgeries to count, were completely exposed.

Rebecca revealed every scar in its full glory. And yes, my daughter’s battle wounds are fully glorious. Physical proof of a strong and courageous survivor.

In shocked astonishment, the parking bully that once had a waterfall of speech was now struggling to utter a single drip of a word. Rebecca nodded her head at this now silent observer, slowly lowered her shirt, and walked away.

Brilliant.

These parking lot interactions though, cause me to reflect on how judgmental our world has become. Or maybe the world has always been judgmental and I am only now sadly noticing??

We have no idea what circumstances others around us are dealing with. Yet somehow, we feel justified to presume? That we have a divine right to judge the intimate intentions, thoughts or health of complete strangers? We view an outside exterior and assume a story. And then we take that uneducated story and justify berating innocent victims in the process.

We all have scars. Every person who lives upon this earth has a version of their own glorified scars. My daughter’s happen to be highly visual, a written history across the outside of her abdomen. Others’ scars may be hidden, written across their hearts or minds. Should humanity be expected to reveal their scars before given grace?

Even the apostle Thomas had to run his hands across the scars of Jesus before he believed in His Savior. Do we require the same?

Jesus’ response to Thomas: “Because you have seen me, you have believed; blessed are those who have not seen and yet have believed,” John 20:29.

Blessed are those who have not seen the scars yet still give benefit before the doubt.

Blessed are those who give acceptance before presumption.

Blessed are those who provide innocence before guilt.

Give mankind grace without expecting them to reveal their scars. Give them grace without understanding the wounds they bear.

Give grace to the co-worker with hidden scars of depression

Give grace to your neighbor with hidden scars of grief

Give grace to your friend with hidden scars of rejection

Give grace to the teenager in a handicapped parking space battling the hidden scars of a lifetime of surgeries and pain.

Give grace simply because you can. An unexpected miracle.

Thank you Lord.

“Brothers and sisters, do not slander one another….There is only one Lawgiver and Judge, the one who is able to save and destroy. But you – how are you to judge your neighbor? James 4:11-12

 

Striving for Abnormal

Rebecca wanted so desperately to go to Colombia for a mission trip this summer. A huge group of her friends from church went last year, and she was determined to go with them this summer. She begged to go. Not only was it going to be a great experience with her friends, but she would be able to help other children in need. A win-win for Rebecca.

And when I say Colombia, I mean Colombia the country, not Columbia, South Carolina. You know, the country in SOUTH AMERICA.

On top of wanting to go to a country with a different language in a village with questionable medical care, she wanted to go without Brian and I to chaperone. Because “no other kids were going with their parents” and she wanted to be ‘normal’ like them. If they could go with only the youth ministers, then Rebecca wanted to go with only the youth ministers.

Shockingly, her parents’ answer was no. Although it was a sad no because Brian and I knew how much this freedom would mean to Rebecca.

A chance to be ‘normal’.

But when the youth group trip to Alabama came up, we said a resounding “yes!”. Alabama we could get to relatively easy in a crises, Colombia not so much.

And not only was the trip in the continental states, but one of my best friends, Amy Stephens, was chaperoning and dedicated as Rebecca’s surrogate mother during the trip.

We were set.

Rebecca was on cloud-nine. She talked of little else than the opportunity to be ‘normal’ like the other high school children. She made and shopped for her packing list and baked gluten-free goodies by the hundreds – that is not an exaggeration – she made over a hundred gluten-free muffins and pretzels and they were not worth the taste of one. Please do not share that tidbit of information with my daughter as she thinks they were DELICIOUS, but I think years of drugs must have surely dulled her taste buds…

Rebecca left for Alabama with high-spirits and no parent chaperones in tow.

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And then, a mere three days later, Rebecca’s ‘normal’ high school experience came crashing down with her weak body unconscious, laying on an auditorium floor.

After an ambulance rushed Rebecca to the hospital from a serious adrenal crash, after her mother yelled from a different state on the phone with the EMS trying to explain treatment protocol with an injection they were refusing to give, after hours in a hospital with no response and the refusal of allowing Rebecca’s chaperones, including Amy, to enter the room with my child until she was ‘stabilized’, after frantically and fruitlessly attempting to find a way to reach Rebecca (me from Pittsburgh during PancreasFest and Brian from San Antonio) because there were no available flights until the morning, and after Brian finally found an early-morning flight to reach Rebecca and fly her home safely, Rebecca’s ‘normal’ high school experience abruptly ended not-so ‘normal’.

And my child was sad. Desperately sad. As sad as she had been excited to go. She wept with disappointment, not understanding why, after everything she had been through, she could not enjoy a few carefree days. A few days without worrying about medical appointments, scheduling massive procedures, and deciphering complex medication dosaging. A few days without excruciating pain, the isolation of loneliness, and missing out on the limitless list of what her body is not capable of doing. And Rebecca certainly wanted to go a few days without losing consciousness in a serious adrenal crash, riding in yet another ambulance, and visiting one more hospital in one more state.

But those few days of ‘normal’ she fervently wanted did not happen. In fact, Rebecca slowly started to realize those few days of ‘normal’ she dreams of may never happen. At least not without a very abnormal dose of medical madness.

After the incident, I explained Rebecca’s emergency to my friend Jeff, texting him stating, “I know you may not believe this but there was a time in my life when everything was not so chaotic. Those days are clearly gone.”

He followed that text with three simple words:

“Normal is boring.”

And I thought about those convicting words for a minute and realized Jeff was exactly right.

Normal is boring.

Normal teenagers do not start non-profit organizations that raise almost 1 million dollars in a year and a half.

Normal teenagers do not speak to over 600 kids, inspiring them to turn their hardships into good.

Normal teenagers do not become a role model to countless children suffering.

Normal teenagers do not spend their free time trying to come up with a cure for a pain-ridden disease.

Yes, normal is boring.

And while I will continue to pray that Rebecca will have opportunities to experience more carefree moments in her life, I also recognize that her unique life is a gift. She has filled her 17 years with beauty and purpose, far more than most 90 year olds living today.

Because, what is the purpose of life if we do not live for a purpose?

May we all aspire to be abnormal. An unexpected miracle.

Thank you Lord.

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I want to give an enormous thank you to Oak Hills church student ministry team for handling Rebecca’s crises remarkably. They loved her and took care of her as if she was their own because they feel Rebecca is their own. A special thank you especially to Rebecca’s surrogate mother Amy Stephens, the student minister Samual Bernal and Nurse Devon Moore for never leaving a moment – from the ambulance ride, to the waiting room, to the hospital room when they finally allowed you to join Rebecca. You provided laughter and smiles while bringing comfort to a scared girl.

Rebecca’s other hero was her life-long friend Amelia Henderson. When Amelia realized Rebecca was going by ambulance to the hospital, she rushed back to her hotel room and got her Pooh Bear because she remembered Rebecca had never been to the hospital without her beloved Pooh Bear. Having a friend like Amelia is more of a comfort than all the stuffed animals in the world.

Thank you Lord for providing Your children to embrace my child during her time of need….

Love to each of you,

Christyn

Hail Storms of Life

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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,

Christyn

AMAZING Hospital Spring Break 2019

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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.

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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.

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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,

Christyn

Raising Hospital Boys

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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.

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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.