How to help

Stepping away from the deep, emotional stuff temporarily, I will share some ideas about how to help a friend when his or her child is hospitalized.  Aiding my aging memory were my wife, Valerie, and a friend, Kirsten McGonigal, whose daughter received a kidney transplant.  Please leave comments if you have additions to this list below.

Coordinator – It starts with a coordinator to uncover the needs, then manage the network of friends and delivery of solutions.  This friend might need to lovingly TAKE the position rather than ask for permission, as your friend may feel guilty in asking.  The job requires effort, so multiple coordinators can share the load between meal scheduling, sibling care, errands for the house, managing social media and help at the hospital.  This is our coordinator, Julia Moomau, and her husband, Steve; but don't contact them...THEY'RE OURS!

- Home Needs -

Siblings who are not yet driving still have school, extracurricular activities, homework, hunger and a desire to visit parents.  Uber is a solution, however a family friend playing the part of deliveryman/cabby will give the sibling more of a feeling of security, familiarity and being cared for, all of which are even more necessary when Mom and Dad are around less.  Also, provide solutions for getting the siblings time with their parents outside of the hospital room, even if it’s just downstairs at the hospital.

Clean house – For someone in the hospital for more than 2 – 3 weeks, volunteer to clean their house, or take up a collection for a maid service.  The first time we were in the hospital, in 1995, a friend from Sunday school, who was an interior decorator, not only brought a cleaning crew to our home, but she also rearranged furniture and rehung pictures.  Had she asked, we probably would have refused (more guilt).  That said, we loved it.  The yard is another opportunity to help.  Valerie’s gardening friends have taken care of our plants when Val was away for extended periods.

Mail – The rest of the world continues.  The utility company doesn’t care that your kid is in the hospital when payment is due.  Collecting mail and filtering out the trash is usually one of my tasks, but it is easy for a neighbor to handle.

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Pets need to be fed and exercised.

- Hospital Visits -

Dress Code - Don’t dress up.  The person you are visiting may not have showered in a few days and already feels grungy.  Women especially may feel embarrassed in their unkempt state, possibly lacking makeup, so tone down the clothing and makeup.  I’m not talking Addams family, just nothing fancy.

Meal Companion – It helps for the parent to get out of the hospital room for a short time, and an opportunity to speak with someone connected to the real world is refreshing.  Even if it’s just the hospital cafeteria, schedule a time to take the parent for a meal; or volunteer to stay in the child’s room while the parents eat together.

Care package – Any combination of the following: nutrition bars, fruit, lip balm, mouthwash, mints, travel toothbrush/toothpaste, water bottle, ibuprofen, gift card, lotion, sanitizer, socks, slippers, pillows, blankets, face wipes, deodorant, book (nothing where the character dies in the hospital), magazine, tea bags, individual instant coffee packets (hospitals have coffee, so this is more to spoil the person), sweetener (some hospitals may be limited in the variety of sweeteners; here in Texas, it’s occasionally limited to the pink stuff)

- Other ways to help -

Integris Baptist Hospital chapel

Integris Baptist Hospital chapel

Prayer – Look at everything else on the list.  This is the easiest thing to do.  Need I say more?

Meals/gift cards – Time, location and participants in a family meal are all uncertain when a hospital stay disrupts the schedule.  When a child is in the hospital, the family may eat a regular, sit-down meal at home only a few times per week, and they may not know in advance which days that will be.  Since friends tend to deliver meals ample enough for two sittings, probably only a few per week need to be scheduled, and fill in the rest with gift cards for flexibility.  Additional meals can also be scheduled for delivery to the hospital, allowing the family to not only connect to the outside world, but share the food with other patient families.  Meal Train is an online scheduler that can help.

Social Media – Facebook has been helpful in updating friends and family on our hospital status, and the replies we saw were comforting.  Caring Bridge is also very popular for online status updates.  During especially difficult times, it may help to have someone else available to manage social media for the family; and don’t expect the family to reply during those periods.

- Why? -

Many people say, “God won’t give you more than you can handle,” but I don’t believe God gives bad things to His children.  The world does that, God will allow it to happen, and it may be more than we can handle on our own (this is a blog for another time).  However, that is where friends and family can be His hands and feet to help those in need.  For help received from family and friends, “thank you” doesn’t even begin to express my gratitude and how much I’m still thankful.

P.S. OK, maybe I got a LITTLE deep in this blog.

Why I do what I do

In addition to my full-time work, I’m involved in many endeavors that keep my calendar full, and writing this blog is just one of those.  It takes a larger portion of my time than any other “extra” activity, with no tangible return.  It sometimes seems like too much, but seeing people share these blogs, and the supportive comments I receive, help me to keep going.  What also helps are things like this.  It is a ten-year-old boy named Drake and he’s battling cancer for a second time.

An earlier blog described Trenton’s attitude during cancer, and my concern that chemo would wear on him, emotionally as well as physically.  The moment I addressed it with Trent, late at night in his hospital room, Trent was standing in the same position you see Drake.  The room was dimmer, Trent was wearing a hospital gown, but it was the same stance, bald and wincing in pain, leaning on a counter for support.

Trenton got through it and we have moved on, but Drake is still dealing with it…again.  He’s discussing his own death with his mother.  He’s scared.  He’s weak.  He’s exhausted.  He’s vomiting.  And he’s only ten.

Simply writing a blog probably won’t help Drake, but maybe it will help someone along the way.  I hope to add more resources as time goes by; I’ll find a spot in my calendar.  The effort feels like a lot, but it doesn’t seem like enough.  When I see what could have been, how close we have been and yet how quickly we return to our normal, it’s increased my thankfulness, as well as my sense of responsibility.  For me, it’s a necessity to give back by paying it forward.  Regardless of whether something similar has happened to you, I hope you too will pay it forward.

See the picture of Drake, imagine that it was once Trenton, and understand that it is why I do what I do.

Still Thankful

P.S.  And then there’s Ari.  He just learned he's getting a new heart.

Valerie's guardian angel

You may have never seen your guardian angel in the flesh.  We’ve seen ours.  At Children’s Health in Dallas, a heart transplant coordinator is the first point of contact for anything – ANYTHING - health related.  Your transplant kid has an illness that concerns you? Contact the Transplant Coordinator.  One of the siblings MIGHT have been exposed to something contagious?  Contact the Transplant Coordinator.  Keep in mind that Valerie had learned much about caring for sick kids over two decades, but any uncertainty still took her to our guardian angel - Susan Daneman, Transplant Coordinator at Children’s Health.  No day of the week, no time of day was Susan not available to consult with Dr. Val. 

This is our family’s love letter to Susan.

Susan,

You’ve heard me say it for years, but you may not fully appreciate what “my wife’s guardian angel” means to us.

As large as Children’s Health is, as many who have cared for Trenton, no one has cared for our WHOLE family the way you have.  The birth and growth of Allison.  The growth and graduation of Austin.  You know about it and you are one of the family.  It is not just about Trenton, and in many ways, it has much to do with Valerie.  When Trenton stays in the hospital, Valerie stays with him to care for him.  My job is to care for Val, but my ability is often limited, and that’s where you step in.

When Valerie needed to sleep at night, whether at home or in a hospital room, your calm reassurance during uncertain times provided relaxation.  Stupid questions were never stupid questions to you.

On a late Sunday evening, Valerie didn’t hesitate to call you when Trent was shaking and pale with a high fever.  You heard Valerie’s voice on the phone and remained calm when Valerie wanted to panic.  Valerie told YOU what was best that night, and you knew, better than anyone, when Dr. “Mom” knew more than Dr. “Cardiology.”

From cardio to chemo, still a guardian angel

Although chemo is not your area, you took an interest and checked on us anyway.  Your presence gave the setting a familiarity which reminded us we had survived the journey before, and we could survive it again.

You know the details.  You know Trenton’s personality, his impatience and confidence, and you how to talk WITH him rather than AT him.  You were on his side and he was on yours.  You became his mother, his sister, his friend, his advocate, his literal bodyguard.  You have been there for over two decades, until the day he left…and I thank God I was present that day.

The day we said good-bye

You were there on a Saturday morning when we said good-bye to Children’s.  Trent was ventilated, unable to speak as the team prepped him for transport to Baylor hospital; but you communicated with him, and I watched closely, knowing this was a significant time in our lives.  You promised Trenton that you would attend his college graduation (we still have the promise Trent had you sign).  You sounded positive as you looked him in the eye, trying to smile while tears welled in your eyes.  You even locked pinkies with him.  The image of you telling Trenton good-bye is burned in my memory.

So many people at Children’s Health have had an impact in our lives.  So many have stuck Trent, scanned him, x-rayed him, bandaged him, cut into him, taken his blood (and any other fluids they could find), all out of concern for him.  We are so (Still) thankful for them; but when I think of Children’s, when I think of the hand we grab when we’re on the ledge, the face of Children’s, the “mother” of Children’s is you.

Now that you know this…no pressure.  There are more families at Children’s in need of a guardian angel, and we’re glad to share ours, because for Susan Daneman, and other guardian angels on earth, I’m still thankful.

P.S. I would like to hear about your guardian angel on earth.  Please share your thoughts in the comments section, and pass this to others to do the same.

Attitude from the gut

Today, February 1st, 2017, is a special day...

Hair was a defining feature of Trent from the day he was born with a full red mop of it in 1994.  His first haircut was at five weeks old.  Trent had more changes in styles, colors and spikes before high school than I have had my whole life, so I was concerned when he decided to have his head shaved in preparation for chemotherapy.  It was his senior year in high school, a week after taking his senior pictures and his hair still looked great, so I reminded him, “The oncologist said some people don’t lose their hair.”  Trent responded, “I just want to get it done.”  The morning he showered for his haircut appointment, strands of hair began to run down the drain; and during the haircut, the woman who had cared for it since he was a toddler cried.  Trent seemed fine.

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Trenton was diagnosed in late 2011 with Hodgkin's lymphoma in his abdomen (thus the "gut" title), and oncology was a new area of the hospital for us, but Trent treated it as just another hospital visit.  Our dog, Snowball, probably thought that Val took the germ thing too far.

As chemo and the associated discomforts wore on, I wondered how Trenton’s attitude would hold up, so I asked him.  It was late at night in Trent's room at Children's, with lights extinguished, monitor screens and LED's from assorted pumps sufficiently illuminated our space as I watched Trent, in pain, leaning on a counter.

“Trent?”

“What,” he groaned.

“Are you starting to get those feelings like ‘why me?’ and ‘it’s not fair,’?”

“No.”

“Are you sure?”

“Yes.”

“Good, because there are kids who have had an organ transplant, and there are kids who have had cancer, but few who have had both.  There are a lot of kids going through what you are now, and they may get those feelings that it’s not fair.  Keep your attitude positive, because you can be a great example to help them.”  “I know,” was his only reply.  And that was the end of our discussion.

A couple weeks later, however, I asked a friend who had survived the same type of cancer to come visit Trent.  They shared war stories of discomforts, but following a brief moment of silence, Trent commented, “Well, I've been through worse than this.  I've had a heart transplant.”

The day for which we had waited – our final oncology appointment - finally arrived.  I was a little anxious in the waiting room of the oncologist, and as we walked down the hall and into our consult room.  We waited only briefly, however, until a nurse walked in with two wrapped gifts.  “We always bring gifts when someone is done with chemo,” she said.  We paused momentarily, looking at each other...  Did we just hear what we thought we heard?  Valerie sought clarification.  “You mean we are definitely done with chemo?”  When the nurse confirmed, Valerie sat calmly though her face jumped for joy, her eyes lit up as they hadn't in months.  Trenton, however, was emotionless, almost as though he hadn't heard the news.

Doctors Tanya Watt and Priya Mahajan eventually joined us to confirm the good news.  We wanted the tumor to shrink ninety percent and it shrank eighty-nine percent.  The remainder would continue to shrink and a small portion would become scar tissue.  I listened to the discussion, but kept wondering what Trenton was thinking as he sat calmly.  Once we left, walking down the hallway, I patted Trenton on the back and asked, “So, what did you think of the news?”  Trenton, confidently and matter-of-factly, answered, “I knew it.”

Lessons came from the overall experience, but especially the initial meeting with Drs. Watt and Mahajan, three months prior.  Dr. Watt, sufficiently pregnant (although I made no mention of her state, as I had learned long ago to say nothing until the mother is at least a few days postpartum), spoke quickly as she delivered the results in a fashion that made this event seem almost routine.  She informed us that eight percent of transplant kids get cancer and that Trent's classical hodgkins lymphoma was a rare type of cancer for transplant kids.  My stomach and attention both leapt hearing this as she continued, “...and there is an eighty-five to ninety percent success rate with four rounds of chemo and he won't need radiation...”

“Wait wait wait.” I interrupted.  “Go back.  Did I hear you say there is an eighty-five to ninety percent success rate?”

“Yes.”

A quick glance at Trenton revealed no smile, but his eyes lit up slightly and I detected an expression of satisfaction when he processed his odds.

I recently met and shared my Children's connection with Dr. Stephen Skapek, Professor of Pediatrics and Director of Hematology/Oncology, and leading the research lab at UT Southwestern in Dallas (and a very pleasant person).  I told him, "Prior to cancer, I didn't think attitude was as important as people say.  You do your research to find a solution and you just fix my kid, then our attitudes will be fine.  However, Trenton's confidence in a successful outcome helped him through the process; and that confidence came from Dr. Watt’s confidence in ample research.  Therefore, your research is not just providing you with solutions; it's providing the patients confidence.” 

See a bit of Trenton’s attitude here:

So, why is today special?  The final meeting with Dr. Watt was five years ago today.  Trenton is now five years cancer-free (and he's probably not thinking about it).

For those who support medical research, those who do the research, and for the confidence it provides during difficulties, I'm still thankful.

Hope - the prequel to Still Thankful

My last blog, “Attitude from the heart,” mentioned following it with a part two, however an awesome detour was thrown in my way when a friend introduced me to Brian Summerall’s recount of Christmas eve.  I contacted Brian for permission to give it special attention as a guest blog, because it is an excellent representation of Still Thankful, yet from an angle our family hasn’t experienced, and thus I can’t adequately explain.

O holy night

I spent Christmas Eve, not in the way I expected last night. My friend, Tod Bush, passed away a couple of days ago. While his brain showed no activity, his body was kept alive on a respirator for the last two days. So yesterday evening I went up to the hospital for one last earthly goodbye and to try to find some closure.

What I found instead was hope.

Tod Bush

Tod Bush

You see, Tod was an organ donor, and his body was kept alive so he could serve as a gift to many with no hope. After a tearful “I love you and I’ll see you in heaven,” and a final prayer, I sat with his family in the waiting room as this friend I love became the ultimate gift on Christmas.

In the midst of pain and heartbreak, hope entered right about 8:00 in the form of a blue cooler.

It was accompanied by an EMT and two heart surgeons (one in scrubs and one in golf pants and hat) from North Carolina. They had just landed at Addison Airport and arrived by ambulance. One of the surgeons told us Tod’s heart was going to a woman who desperately needed it in North Carolina. While the surgeons were rushed to the operating room with their cooler, we sat with the EMT for two hours and told her about Tod.

Next thing we knew, the EMT got up, the surgeons rushed by, thanked us and told us everything went perfectly, and Tod’s heart rolled out the door in that blue cooler and boarded a private plane to North Carolina.

Jesus gave Tod a new heart when he accepted him at Frontier Ranch 30 years ago. On Christmas Eve, Tod gave that heart to a woman in North Carolina to save her life.

“Love so amazing. Love so divine.”

Within minutes, the next EMT rushed in with the lung team. We told her about Tod and his love of the Dallas Mavericks. We told her about the woman in North Carolina who would get Tod’s heart and would soon be wondering why she has a strange desire to watch Mavericks games.

After about an hour, his lungs rushed out the door to save a man in Florida.

“Then the LORD God formed a man from the dust of the ground and breathed into his nostrils the breath of life, and the man became a living being.” Genesis 2:7

The same lungs that God breathed life into for Tod would now give life to a man in Florida. The lungs that climbed mountains so countless kids could hear about Jesus would now give life at sea level.

“A thrill of hope the weary world rejoices.”

It went on all night. They took his eyes so a blind man could see.

“Mary did you know that your baby boy will give sight to a blind man?”

He gave everything… heart, lungs, kidneys, liver, eyes, skin, bones, tissue. Coolers rolled out, and planes took off one after another filled with gifts of hope.

Tod gave everything so that people who had no hope on Christmas Eve would receive the gift of life on Christmas morning.

What’s truly amazing about all of this and the reason it truly stirs our hearts is that Tod’s story is really God’s story. What Tod did for so many last night, God did for all of us on Christmas.

Like the woman in North Carolina, God’s word says our heart is defective.

“The heart is more deceitful than all else and is desperately sick; Who can understand it?” - Jeremiah 17:9

We are in desperate need of a transplant. Without a donor, we have no hope… no life.

On Christmas Eve, God entered the story. But instead of hope in a rolling cooler, we find it in a manger. Hope entered the world in a baby. Jesus. God with us.

A world with no hope on Christmas Eve, was given the gift of life on Christmas day.

“He came that we might have life and life to the full.” - John 10:10.

And just like Tod, God gave everything.

“For God so loved the world, that he GAVE his only son…” John 3:16

“Surely he took up our pain and bore our suffering… and by his wounds, we are healed.” Isaiah 53:4-5

The ultimate gift.

“Yet to all who did receive him, to those who believed in his name, he gave the right to become children of God” - John 1:12

Those who received Tod’s gifts last night got a new life. Those who receive God’s gift today, get eternal life.

New heart, new breath, new sight, new life.

So in the midst of heartache and loss last night, I saw God’s story. I saw what God did for me. I saw hope.

I saw Jesus in Tod when he lived, I experienced Jesus in Tod when he died.

“A thrill of hope the weary soul rejoices
For yonder breaks a new and glorious morn!

Fall on your knees
Oh hear the angel voices
Oh night divine
Oh night when Christ was born.”

Michele & Brian Summerall

Michele & Brian Summerall

 

 

 

Thank you, Brian, for your words.  It is people like Tod and Robyn Bush, and the hope they create through organ donation, that allow people like me to be Still Thankful.

Attitude from the heart

They say it’s not what happens to you, but how you react to it.  They say attitude is everything.  They say that what doesn’t kill us makes us stronger.  They say experience is the best teacher.  Well, sometimes I wish “they” would shut up.

Trenton always considered himself special for his transplant, probably because Valerie and I felt the same way, choosing to show him off rather than hide him.  We had received a gift of life and felt the need and opportunity to help others by promoting organ donation.  Trent and Valerie had been on television, radio and in print.

(Trent sees himself in a monitor in the first of these two interviews)

He threw out the first pitch with Carl Lewis at a Texas Rangers baseball game.  He also presented a plaque to Tom Landry at halftime of a Dallas Mavericks basketball game.

A newspaper article on Trenton appeared in the Dallas Morning News when Trent was in elementary school.  Two weeks later, our Indian Guides tribe attended a Rangers baseball game where the boys were allowed on the field.  The kids lined up on each side of the dugout to welcome the players down the “rally alley” before the game began.  Kenny Rogers, a pitcher, walked onto the field, straight to Trenton and spoke with him.  Trent made little of the encounter at the time, but a few innings into the game, he leaned over to me and said, “Hey, Dad, do you know why that guy talked to me?  He probably remembered me from the newspaper article.”

Trent managed to get himself in trouble in elementary school, even though he was in a wheelchair with a cast following knee surgery.  The girls in his class were nice enough to help Trent and even push his wheelchair, but Trent went too far when he began giving them orders.  In his mind, he was the boss and the girls were privileged to be his subordinates.

Trenton’s adolescent years brought the typical parenting challenges, but few associated with his medical history.  Valerie and I had heard stories that occasionally a transplant kid will stop taking immunosuppressants (anti-rejection drugs) in the teen years and won’t tell anyone, basically committing suicide.  The kid decides it’s not fair, that his or her life can’t be like non-transplant kids.  They feel burdened by the meds routine, the doctor visits, the uncomfortable side effects.  They give up.  While Trent had felt plenty of frustration, it had never become desperation.

Cancer still a part of our recent past, Trenton lived at home his first year of college to be near Dr. Mom, so he was eager for independence as a sophomore.  Those plans were delayed when Trent began to feel ill the day he moved in to his apartment.  By midnight he was in ER at Children’s, and the next morning he was quarantined in ICU, diagnosed with a staph infection, the source of which was unknown.  For two days, we were required to scrub in and wear masks and gowns before entering his room while doctors searched for the source.

On the third day, a new type of test was run.  Results available a few hours later, the cardiologist walked in Trent’s room and reported, “I’ve been doing heart caths eleven years and it’s never happened, but that’s what it was.”  Heart catheterizations involve going in through a major artery.  Trent had a routine heart cath only a month earlier, and someone hadn’t followed procedure, causing an infection on Trent’s heart.  Trenton’s response: “Hey, nobody’s perfect.”

Trenton seems to think Valerie worries about him too much, and every so often something happens to remind Val to keep worrying.  This time, it was in the spring of 2014, seven months after Trent’s staph infection when we learned his body was rejecting his transplanted heart.  While Val’s worry kicked into a silent high gear, Trenton’s “whatever” cruised at a steady pace as he informed the cardiologist that the transplant needed to be in June or July, because he was busy.

I wondered how Trenton could have such an attitude, and after the transplant I may have found my answer.  A friend loaned me a book, “David and Goliath” in which author Malcolm Gladwell shares a variety of challenges and setbacks which the characters used as assets in attaining success (for instance, a disproportionately high percentage of CEO’s have dyslexia).  The story that caught my attention was of Britain during the second world war.  The British government, fearful an attack by Germany would not only be physically devastating, but psychologically, built multiple psychiatric hospitals outside the London city limits to handle the anticipated casualties.

Once the bombings occurred, buildings were leveled, thousands were killed and thousands more injured, yet the psychiatric hospitals were empty.  It turned out that, after the first bombing, survivors realized they could in fact survive a bombing.  Furthermore, as the bombings continued, as devastating as they were, they reinforced the survivors’ beliefs.  Multiple times they would experience one of two types of misses.  A “near miss” was close enough to feel, and perhaps even get injured, but they survived.  A “remote miss” may have been only a few blocks away, close enough to hear, maybe even seeing the bombs falling from the sky, but the person knew he or she would be unharmed.  For some people, the near misses became almost like a show to watch.

That was Trent.  He had felt near misses – transplant number one, cancer, staph infection – and had always survived.  And he witnessed a multitude of remote misses – knee surgery, monthly checkups and annual heart catheterizations.  The combination of these misses over his lifetime might have reinforced to Trenton that transplant number two, while something that may seem too overwhelming for most people to face, was just another “bombing” like many before.  The cardiologist sounds the alarm; the family takes cover; their world shakes; and once it’s over Trent just goes back to school.

This is not to say Trent is oblivious to the risks.  One morning, a few days prior to being listed for his second transplant, Trent awakened from a multi-day heavy sedation and joined a discussion of whether the hospital would list him.  The cardiologist did not hold back, sharing his own questions of why and why not listing, the possible outcomes if Trent were not approved, and how long Trenton might survive if not listed.  Trent was unusually quiet later that afternoon, lying still, mostly looking distantly up at the ceiling while holding Valerie’s hand.  I noticed his eyes watering but he never cried.

Mistakes.jpg

A lesson from this, like it or not, is that experience helps.  I wish Still Thankful could provide all the secrets to surviving traumatic situations, but like “they” say, sometimes “you just have to be there.”  I share what I can so you can learn from our experiences and be better prepared to care for yourself or others facing a trauma.  However, at some point, experience will be your best teacher.

Notice I didn’t include our cancer adventure; it will be the next blog with a different lesson.  I guess you could say this one was from the heart, and the next one is from the gut (the cancer was in Trenton’s abdomen…get it?).

For difficult experiences, I’m NOT thankful, but for the wisdom and ability to help others because of those experiences…of course I’m still thankful.

P.S. – To explain the pictures at the top, three of the many friends who have positively impacted Trenton’s attitude:

1. The York family would have Trenton out to their ranch in Stephenville (where he slept with/on/under their Labradors).

2. Deana Dynis, Trent’s 3rd grade teacher, and his Executive Director when he graduated high school.  She was there for him in between those years and ever since.

3. Did you know Trenton is a second-degree black belt?  Being trained by Master Cha in Coppell, Texas was a major factor in building Trenton’s confidence, respect and courtesy; and Cha trusted Trent, as weapons expert, to train others.

STILL THANKFULsgiving

Thanksgiving would have been an ideal day to share something on Still Thankful, but I was spending that time with family.  I did, however, ask my family to share something for which they are thankful, and in the spirit of Still Thankful – “in spite of life’s challenges” – I asked them to share a challenge from which they found thankfulness if they could think of one.

Valerie - My partner, COO, doctor, best friend and best half (not that I have a good half without her): 

The view from our bedroom

The view from our bedroom

My big challenge this year would have to be embracing CHANGE. Not only becoming an emptynester but downsizing to a downtown apartment, leaving a part time job of 15 years and learning to live in a totally different atmosphere has been difficult. However, now that I'm there I love my new stage of life! It's so much fun being a couple again with the man I married almost 30 years ago. Thankful for each and every day!

Cammy mom.jpg

Cammy - My brother Danny's wife, and Chief Operations Officer at the Cary Compound, especially over the past decade as she has cared for my aging parents while managing her own gang: 

Cammy dad.jpg

I am thankful for my parents. For marrying so very young. For sticking with it even though you had so many things that were not in your favor. For raising me to be the woman I have become. I owe you so very much.  

I have always thought of myself as thankful for my parents, but as a fifty something mom who has been through some large challenges, I can truly say that I appreciate them both now in a way that was simply not possible as an immature adult.

Clairanne & Curt & Grant & Nolan & Madeline - My younger sibling, her husband and three kids:

We are thankful for our 3 beautiful children.  When unable to get pregnant naturally, we tried invitro-fertilization.  As the process progressed, we were informed by the doctor that we were having triplets.  Grandma was in the room as we found out and Curt had to sit down.  As the doctor told us, "Baby one, baby two, and there's baby three," Grandma couldn't hear him, tugged at his coat and said, "What did you say? We're having three?"  All I could do was laugh.

Clairanne.jpg

As the first few weeks passed, the fear of a triplet pregnancy became real.  But we are still thankful that the pregnancy wasn't difficult.  The worry of having them too early was always on our minds, but by the grace of god, they arrived healthy, and for that we're still so very thankful.  But next year, we'll have 3 soon to be high schoolers, please pray...

 Jaeton & Rachael - Danny's oldest child married a young woman this past summer who sings like an angel: 

Rachael and I are thankful for our year of blessings. Many people (especially some our age) might lose their minds at the thought of marriage and a baby in the same year, but we couldn't be more thankful for the blessings the Lord has given us.

Austin - my oldest "child" is a CPA with EY:

I am thankful for my coworkers. When the days are long and the work is lackluster, I am thankful that they are quality people who help keep spirits high.

 Kira - Austin's wife took the challenge of teaching in impoverished middle-schools, currently in Houston.  Her kids, nearly all Hispanic, have literally been living in fear recently.  Imagine trying to learn while fearful.  Imagine being the one to teach and inspire them.  Notice the creativity in her formatting, and be thankful there are people like Kira to teach our kids: 

Sometimes it has been difficult

To remember why I decided to go

Into my profession. With the culture of

Learning focused on results and not process, my

Love for teaching has dwindled greatly.

 

Those moments when I question myself are

Hard to live through. But when I am

Awash in doubt, I think of my students and how they

Need me to be at my very best every single day.

Knowing that keeps me going; it gives me the

Fuel I need to keep showing up day after day. 

Ultimately, they are what matters. Even if only one of them

Learns to dream bigger and reach higher, I have been successful.

 

And the opportunity to make a difference is why I am still thankful.

 

Madisen & Seth - Danny's second child and her husband:

Seth and I will have been married 2 years on the 29th. It’s been pretty smooth sailing for us, that is until about 7 weeks ago. 

Seth has had Eczema since he was a baby. The go-to treatment is topical steroids. Little was it known at the time that you can get addicted, burning for more steroids to relieve the constant itch. The cure? Going off of steroids cold turkey. So, after roughly 25 years of steroid use, we decided to take him off of it. The result is withdrawal - intense itch, burning, sweating, dry skin, swelling, blisters, and no sleep. That has been our entire life these past 7 weeks, and recovery time varies - between 4 months to 3 years. 

 

So what are we thankful for during this struggle? Many things actually. 

1. People who listen. Most doctors we have found are not willing to listen to the idea that you can get addicted to topical steroids. They want to give you more, concluding it is only a bad eczema flare. Once, when shopping at Walmart for something to help relieve Seth’s neck pain, I asked an employee where I could find Oragel, and she asked why. Turns out her own mother had gone through the same thing and used Oragel to help as well. I'll never forget her last comment: "I hope this helps, but both of you are in for a ride." She was right. 

2. The internet. No, seriously. We really would not be able to get through this without testimonials of others who have shared on blogs or started websites. In fact, we never would have realized there was a problem/possible cure to Seth's eczema in the first place.

3. Showers. One of the only things that gives Seth some relief for a bit, and helps me to un-stress :)

4. Family, friends, and prayer. All of those go together I am convinced. The love and support we have received has been so encouraging.

Trenton - Let me translate his message below.  Trent is thankful for a video game programming class, because it is one of the biggest projects he has had, making him a better programmer:

#include <iostream>

using namespace std;

int main(void){

         cout << "Hello world" << endl;

        return 0;} 

 

Jessica - Six months after transplant #2, Trent met Jessica; and a few months after that, he was helping her deal with the loss of her father.

I am thankful for friends and family support.  When my dad was in the hospital I had friends that were always there for me to talk to when I needed it and it helped me get through those two months.  Even now they are still there when I'm having a hard time and missing my dad.

Taylor - Danny's third child, or better yet, Cammy's daughter, dependable, sensible, a cook, the one who gets things done without need for the limelight:

I am thankful for the Dazzlers new studio. After twenty years of meeting in spaces around town, we were given the opportunity to open our own studio. There have been many challenges along the way. One of which was finding affordable, quality flooring for our dancers. A Dazzler mother attended the auction of a school that was closing in Kansas and bought us a very nice floating gym floor for an incredible price. The catch: we had to disassemble the 7,000 square foot floor and haul it to Norman, so a willing group drove to Kinsley Kansas in the rain. I mention the rain, because we hydroplayned four times and nearly flipped the car.  We arrived nine hours later and the floor was loaded.  We were thrilled until we found out the floor was basically useless, due to the school having glued down the planks, ruining the tongue and grooves of almost every piece of wood. In discouragement, we looked for another option.  My Uncle, who works for a flooring company, heard about our situation and helped us get a deal on beautiful wood floors! Our dancers, practicing on a floor that we spent so much energy on, reminds us that whatever challenges come in the next twenty years, God’s grace will leave us Still Thankful.

Allison - My youngest is now a freshman at the University of Oklahoma, living in the dorms just minutes from Danny's family:

I have found many things I am thankful for since moving to Norman. One in particular that stands out is this voice, or accent, that Mikayla does all the time because she knows it's the only way she is able to make me laugh. But beyond just that, I am very thankful for all of the Norman Cary's for not only loving me like one of their own, but also giving me a job and free toilet paper because ya girly broke.

Mikayla - Danny's fourth child and the best hope to continue a legacy of humor through my brother's lineage:

I'm very thankful for the many things God has given me. This year the Lord has blessed me in more ways than one but I would have to say one thing I am most thankful for is my best friend. Shoshana has been a great support for me in all aspects of life. She has been there for me in the good times as well as the bad. I consider her my sister and I'm very thankful for the friendship she has given me, and I know that this friendship will continue through the years. 

 

Danny - You may not know our family has experienced the loss of a child.  As you will learn more in future blogs, Danny and Cammy lost Alyssa, their fifth child, at four months old.  One sentence from her dad says a lot:

I am thankful that the Lord is faithful, even in the time of great loss.

Elton – Dad just lost his wife recently, and this is the first big holiday since then.  Plus, he will be ninety-six next month, so understand that, when asked by his grandkids what he was thankful for, all he could share before getting emotional was:

Family.

And me?  Not this time.  My family has this one.  Besides, if you haven't figured it out by now, you will.  Just know I'm still thankful.

 

P.S. We often create our own challenges, which is fine, but can often lead to unexpected challenges for others.  Cammy took on the challenge of hosting twenty-five people for Thanksgiving dinner, and with it, the challenge deviling every egg attainable.  She can be thankful for her success, however, veterinarians in the Norman, Oklahoma and surrounding areas are reporting the challenge of treating a spike in hen exhaustion.

The funny thing about humor

I recall my dad, the father of three, telling someone about raising kids.  “When you have that first child, you want them to be perfect – everybody’s friend, do well in school and sports – but you eventually realize they can’t be perfect.  So, with the second kid, you want him to be a good citizen, healthy and just do his best.  By the time number three comes along, you just want them out of the house alive.”

Comedy usually runs in our family, but sometimes it just oozes and festers.

It was comedy that caused me to begin writing about my kids.  While other parents are better at recording a child’s first steps and words, I noted our kids’ humorous comments, the best of which seemed to begin when they could first colorfully communicate their thoughts, beginning around the age of three.  And Valerie, being at home with them during the day, relayed much of what I recorded.  We were so good at it that Valerie would sometimes call me at work, “I had to call you about this one, because I don’t want to forget it…”

Austin: “After everyone dies, does God make more people?”

Trenton: “I want to be a hockey player when I grow up, because you can hit people and you don’t have to say you’re sorry.”

Allison: “This chicken looks like it was marinated in spit, but it tastes good.”

Comedy has an element of truth, and I have often found myself attracted to that which makes us laugh while also causing us to squirm a little uncomfortably.  My kids have been around it long enough that they too tend to appreciate the humor in situations where others may feel a bit guilty laughing.

The first Christmas following Trenton’s transplant, Valerie’s mother gave us a gift with a tag that said, “To Valerie and David in honor of Trenton.”  Valerie asked, “Are they syringes?”

Scan_20161119 (2).jpg

Large doses of antirejection medicine causes hair growth along one’s forehead, down the neck to the shoulders and further down the arms, and less than two years post-transplant, hairy little three-year-old Trenton was wearing a tank top at Austin’s tee-ball game.  Constantly impatient, Trent had wandered away from the game and over to the playground, so I followed him.  Another little boy, maybe five years old, saw Trent’s hair growth and asked, “Why is he so furry?”  I knelt, pulled Trent toward me and, with my index finger, pulled down slightly on the neck of his tanktop, revealing his scar.  “Do you see this line on his chest” I asked.  “This is where doctors cut open his chest, pulled out his heart and…”  The little boy suddenly lost interest and ran away.

Cancer in late 2011 opened a new, yet still uncomfortable door to humor for us.  We were late for an oncology appointment one morning, but (Still) thankfully rush hour traffic had dissipated, allowing me to “have my way” with the speed limit.  Valerie expressed, more than once, her fear of being ticketed for speeding, to which Trent suggested, “If the police stop you, just tell them your son has cancer.”  And that became our joke for anything that might not go our way.

Make A Wish Foundation grants wishes to kids under the age of eighteen and Trenton qualified by a matter of months.  In August 2012, MAW North Texas flew us to Vancouver, B.C. and treated us like royalty.  Throughout the experience, from the Fairmont Hotel, to the head chef cooking a seven-course meal, to the limo, the face time with Metallica, and standing as close to the stage as anyone could, I kept reminding Trent, “Dude, you are so lucky getting cancer before you were eighteen years old.”

Fairmont Pacific Rim.jpg

In March, 2014, Trenton began the first of a handful of Friday night hospital stays to receive a 6-hour IV before returning home Saturday morning.  He was checked into a room in Children's and began the less-than-welcomed ritual of being hooked to machines.  Trent had come to accept it as normal in his life, but even after nearly two decades of needles, Trent had never gotten used to the next stick.  Thus, the following interaction:

Nurse: “What is your religion?” (part of a longer list of prep questions)

Trenton: “Methodist.”

Nurse: “Does your religion require any special accommodations while you are here?”

Trenton: “Yes, before you give me any I.V., you are required to sacrifice a goat.”

I admit pride in the way my kids have developed their humor, even the disturbing humor. Following a heart in attack in 2014, Trenton said he had considered taking a selfie in the ambulance, but was afraid the paramedics wouldn’t appreciate it. Then, after spending a few hours in ER, we were told Trenton would be moved to a room in cardiac ICU, but still there nearly two hours later, Trent was getting restless, losing patience. Finally, when the person arrived to wheel Trenton to his room, I teased Trent, asking if he was sure he wanted to leave the ER. He said “Yes, I’ll be back some other time.”

There have been times when humor didn’t fit, or was too much of a struggle to be effective, and the following day was one of those.  Following a procedure, Trent arrested and we thought he was gone, and I’m proud to say humor never entered my mind…until we knew he was back.  Our minds and bodies at that point were feeling complete exhaustion.  I slumped backward onto the couch, feeling my deep breaths in my chest momentarily before glancing at the chaplain, Vance, and asking her, “You don’t have a bar here in Children’s, do you?”  Vance replied, “No, but if we did, I’d have a drink with you.”

Childrens Health

Childrens Health

Later that day, I called family to update them, and felt Austin should be one of the first to know.  Austin had recently graduated the University of Oklahoma and remained there to prepare for the CPA exam.  I struggled unsuccessfully to maintain my composure as I told Austin about his brother, but told him everything.  Austin, put on the spot for a response, and not much of a communicator, said, “Well, I guess it makes studying for the CPA seem like not such a big deal.”

Humor has always been a natural part of our family.  Allison’s high school cheer squad suggested she become a standup comedienne; and Austin’s performance review at work included “Austin is good at using humor to lighten a situation.”  You can probably tell by now that comedy is one of our coping mechanisms.  It helps us fit an overwhelming situation into regular life, hopefully minimizing the feelings of fear.  Besides, after all of life’s challenges, it’s important to be still laughing…and still thankful.

 

I'm too late, but still thankful

I would like to share some thoughts on my mother, from the perspective of one of her children.  Much of what I will share comes from my perspective, since I was her favorite.

Mom said a number of things, some of which I paid attention to.  As a kid, what I heard most often was not said to me, but others nearby.  I would comment and Mom would follow it by telling everyone, “Stop laughing; you’ll make him worse.”

Mom was the person who encouraged my writing when I was young.  I never pursued it, not totally believing her compliments, but I remembered her encouragement.  It’s the reason I pushed beyond my comfort zone in creating this blog.

She also made it clear that I should get a college degree.  Graduating college may seem obvious these days, but you need to understand how clueless I was back then.  I got my degree in accounting, because it was the first major on the list alphabetically in the business school.

Trenton kissing Allison with Grandma and Austin looking on

Because of Mom’s encouragement to attend college, I met Valerie at OU and my mother soon became impatient for me to get married.  Some may think Mom was concerned that Val would figure out she was getting the raw end of the deal, but I believe it’s because Mom was eager for more family.  Mom was all about family.

When grandkids came along, each was unique to Mom and she had a special relationship with each, whether they came as one-offs, or a family-size variety pack (triplets) in the case of my sister and her husband.

It was our church and our family caring for us during our first heart transplant.  One evening of many, I was in a rush to get home from the hospital in time to see four-year-old Austin before my parents put him to bed.  I arrived moments too late, because he had just poured orange juice on Grandma’s head, however I was unable to discipline him with Grandma laughing so hard.  He was her grandson and she was all about family.

During Trenton’s cancer, Mom called me just days into the adventure.  Speaking through her tears, Mom, now well into her 80’s, said, “David, I don’t think your father and I can survive this.”  I told her, “You don’t have a choice.”  She knew this, but it was her grandson…and she was all about family.

The quote for which Grandma will be forever remembered by her grandkids and two grand-in-laws is, “I want a great-grandbaby!”  The problem was that none of the grandkids were even married when her demand began.  Seth was dating my niece, Madisen, and Kira was dating Austin at the time they joined us for Thanksgiving in 2013.  As we sat in the living room in a big circle, each person stood to share one thing for which they were thankful.  When it was her turn, Mom forced herself to her feet and exclaimed, “I have two, maybe three, years left in me and I WANT A GREAT-GRANDBABY!”  When it was my turn, I said, “I’m thankful Seth and Kira haven’t gone running out of the house.”  But, here again, Mom was all about family.

All the grandkids

 

So what?

Why the memories about Mom?  Partly because she passed away in her sleep, early in the morning on August 22nd.  The above is taken from the tribute I gave at her funeral.

More so, the reason for sharing came to me the day Mom passed away, after Valerie told me Allie was crying.  Allison had been trained in her single-digit years, while in gymnastics, not to cry.  You fall off the beam; you hurt and get bruised; but you don’t cry.  I can count only three times that I know Allison has cried in the past decade, the latest when learning her grandmother passed away.  Of course, Allie was sad Grandma was gone, but it was made worse because Allie had considered visiting Grandma the day before, but chose not to, believing she would have another opportunity.  Allie learned a painful lesson in putting things off.

And me?  I have written a book about my family’s experiences with Trenton, intending to publish it one day, and my mother would receive the first copy.  I took half of the book draft to her nearly a year ago, which she read intently.  I told Mom that she could read the rest once it was published.  However, life got in the way, the book has not yet been published, and now it’s too late.  Too late to give Mom the first copy (I was going to autograph it).  Too late to give the gift of writing to the person who inspired it (Mom was reading seven books per week in her final years).  To the day she passed away, Mom was unaware that Trenton had arrested prior to heart transplant number two.  I was waiting to tell her when I gave her the book, but…you know.

What are you putting off?  Think you have time?  No family members on their death bed, so you’re OK?  Yeah, Valerie and I thought that too in 2014 when Trenton went into O.R. for a procedure he had many times in the past.  Three hours later, we were facing the reality that Trenton’s heart wasn’t beating and doctors were skeptical of bringing him back.  For Valerie, life’s worst pain was amplified by what was not done.  “I usually hug him before these procedures and tell him not to bother the nurses.  This time, I didn’t hug him or kiss him.  I didn’t tell him I love him.  I didn’t even get to tell him good-bye,” she cried.

 

 

The other side of regret

For every regret, I have many reasons to be thankful.  And for every regret, I have many opportunities ahead to add to my thankfulness.  I do, however, need the occasional reminder to live like I was dying.

 

How tribute ends

Our whole family sat on the first few rows of the sanctuary, supported by many friends, including middle-aged men who, as my friends in their teens, referred to my mother as Mom Cary.  I pointed out that this last act by Mom, bringing us all together, was quite fitting as she was all about family.

 What I didn’t mention at the funeral was that Mom found out, only a week before passing away, that she was going to be a great-grandmother.  My nephew, Jaeton, and his wife, Rachael, are expecting in April 2017.

It goes without saying that, for family, I’m still thankful.

 

Ellah's day of kindness

 

Let me introduce you to one of Trenton’s friends – Elyssa (Ellah).  One week each summer, Camp John Marc, located an hour-and-a-half outside of Dallas, hosts a camp for kids who have had heart surgery.  The week is called “Camp Moss” and is staffed by volunteer doctors and nurses experienced with these kids.

Trent first attended Camp Moss at age nine and returned nearly every year into his mid-teens.  These kids build friendships during the one week that extend throughout the remaining fifty-one.  What the rest of the world perceives as a different kind of life is just normal in this gang, so there is an acceptance and understanding without the need for them to analyze it.  Elyssa was one of the gang with which Trent could relate, thanks to Camp Moss.

How is Elyssa?  She’s great, better than her mother.  Elyssa has been in heaven for nearly three years, while her mom, Edie, is left with pictures, memories and the rest of her life without one of her daughters.  Trenton and his Camp Moss friends attended Ellah’s funeral.

Recall one of my previous blogs in which I shared the value of being able to feel and understand another’s pain.  Two years ago, Edie expressed her pain in a Facebook post that can help you understand.

 

Edie’s words

Tomorrow will mark the one year “anniversary” of you leaving us. After tomorrow that "year of first" will be behind us. I’ve spent 364 days waiting and hoping that this first anniversary would help ease the journey… I’ve come to the realization that nothing, not even the passing of time, is going to make me miss you less. Dad is always so positive and I truly try to be… sometimes my days just suck no matter how much sunshine I try to pour into it. I will miss you until the day I draw my last breath but I promised you I wouldn’t let your leaving destroy me and I won’t. I try to make the glass half full by telling myself that after tomorrow I will be 365 days closer to seeing you again.

When you first passed away Dad talked often about how “lucky” we were… Lucky was not how I felt. Even the word “lucky” in a sentence to describe the situation made my blood boil! As my soul has settled I can see now exactly what Dad meant. You leaving us was not something we had control over but having it happen the way it did was bitter sweet. We were SO “lucky" to be able to say goodbye. Lucky that you passed away so peacefully. Lucky to be surrounded by such wonderful people. Lucky that your medical team not only took care of you but truly loved you. Lucky that we were all surrounded by so much love and support. Lucky? Yes, but what a blessing as well.

One year ago today reality set in. I’ve been a nurse for a long time and still didn’t truly recognize what was happening in front of me. I know you were labeled “terminal” but I had prayed for one more rally. You had cheated death so many times before. You’d sent me home the night before - telling Dad “the lady needs to go home and sleep in her own bed”. We’d been up for days as your condition had deteriorated - first the recognition of a serious blood clot, then the diagnosis of necrosis in your hip joint. Physical and mental exhaustion were setting in. You would sleep for long periods of time, I just attributed it to exhaustion, I realize now that God was preparing you for your journey “Home". You would sleep for hours and be so difficult to arouse - then wake up like nothing was wrong. The night you sent me home your sweet Dad stayed with you while he tended to your every need - you were so weak you didn’t even have the strength to stand anymore. Dad recognized that the end was near before I did. The day before you left us I slept late at home and was awakened by a call from Dad to ask when I’d be coming to the hospital - so unlike him to need me at the hospital, I knew something was wrong, especially by the sound of his voice. I rushed to the hospital calling everyone I could think of on the way. As I arrived at the hospital I was met by three of your care team that knew you well - Dr Barnes, Tracey and Susan. At that very moment I knew. I knew in my heart that it was time to say goodbye. I know that “God has a plan”, I just kept praying his plan would be the same as mine - that you’d flunk hospice, we’d laugh about it and you’d come home again. The team explained that they were getting things ready for you to go home to Rockwall… I almost collapsed. The thought of moving you was overwhelming and I knew in my heart that you felt safe at the hospital. I was thankful that the medical team agreed. We all decided that the hospital was where you’d want to be, where you felt safest. What a blessing to have you cared for by the best and the ones we knew loved you like their own. How lucky we truly were.

Friends came from near and far to say goodbye. Ruth drove sister down to be with us. Our friends swooped in once again to pick up the slack. Your, “super friend", Michelle, was on a bus from Austin and at your side in no time. Nick and Tessa, your college friends and many of your camp family arrived. Uncle Buddy and Uncle John were by your side by the middle of the day. Aunt Natalie was doing her best to get to Dallas. There were so many others I just can’t recall. Nurses like Sabra and Haley that have taken care of you and loved you too came to tell you goodbye. The day turned into night before we knew it. You would wake up and talk to us but you became weaker as the hours wore on. Your sense of humor never wavered - once while I was talking loudly to you - you smiled and said “Mom, you don’t have to yell, I can still hear you.”

Tomorrow is going to be tough no matter how hard I try for it not to be… Dad and I will spend the day together. We’ve decided to listen to your memorial service and watch the slide shows that were shown at the service. Then we are going to go to your favorite Mexican restaurant here in Orange beach to have your favorite - chips and queso. At 12:21 tomorrow our year of first will be done. One year closer to seeing you again.

My sweet niece, Savannah, posted this quote that just seems to say it all so well:
"There's not a stone in my heart I've left unturned. Not a piece of my soul that I ain't searched. The only answer I found for all this hurt is there ain't not an answer here on earth." -Dierks Bentley

 

 

What to do?

Elyssa’s twenty-fourth birthday is the twenty-sixth of this month, and her family would like to celebrate with “Ellah’s Day of Kindness.”  Do something kind for a stranger, neighbor, friend, or family. Volunteer at a nonprofit. Pick up the tab for person next to you in line. Donate supplies to the recent flood victims. Anything.  “Ellah loved life and loved helping others. This way we can make her birthday, or every day, a special day of kindness.”

 

https://www.facebook.com/events/1638897519755826/

For life – regardless of its length, for kindness – whether from friends or strangers, may we be still thankful.

P.S. “Elyssa first attended Camp Moss at the age of 8.  Her last summer was spent as a counselor, then she came home from camp and was admitted to ICU. The only week she missed was the summer of her bone marrow transplant.  When they told her she needed a bone marrow transplant she began to cry.  Between sobs she let me know she had no worries about the transplant, she just didn't want to miss camp.”  See here what great things are done for kids at this camp: http://www.campjohnmarc.org/

 

 

Being a sibling

I am happy to have my daughter, Allison, as my first guest blogger on Still Thankful.  These are her thoughts on growing up as the sibling of a transplant/cancer kid…

My whole life, Trenton and I never really got along. We fought quite a bit and would never be able to sit next to each other for too long. My mom blamed it on the fact that we are "too close in age" therefore we are "too similar" which makes sense, because trust me, there is only enough room in this world for one of me. 

In the movies, to set up a good heartbreak story you have to first start with an abundance of love. If the audience can feel the love and the passion radiating from the big screen, you know you've done your job. This is because the bigger the affection, the bigger the heartbreak, and the bigger the let down when everything comes crashing down. But hey, that stuff only happens in the movies.  

I am sure that many of you have also experienced the feeling of, "I hate them, but I love them." I usually hear people say this when they are talking about their family members, and this also applies to me. While Trenton may get on my nerves, he's my brother, a part of me that, if absent, I would not be me. And as much as I would like to deny it, he has had a big impact on my life and who I am today. At the time he obviously didn't even realize it, but he was impacting my life before I was even born.   

Believe it or not, I sometimes wish I could have been there for the first transplant. Some people might say, "Allison, that's so crazy why would you want to experience your 11 month old brother go through ANOTHER heart transplant?" Trust me, the second one wasn't easy for anyone. It was a traumatic experience and I would never wish it on anyone. But seeing how my parents and everyone handled it, I only wish I could have been there for them during the first one. Not to add to the kid pool and make them even more stressed because they have one more mouth to feed or person to come home to at night, but to just be a supporter for them during the lowest point in their lives.  

 

At four years old, I started in gymnastics and loved it so much, I did it for seven years. After retiring from gymnastics, I still wanted to be active, so I cheered competitively for six years, loving every second. For thirteen of my eighteen years, I’ve realized and been told that, when learning new skills, the first one is always the scariest. Sometimes you just have to go for it, hoping and praying that everything goes your way. And with the right people surrounding you, and the right amount of support, you can come out victorious. When I see someone trying a new skill, I will, to this day, tell them that the first one is always the scariest, so the best thing to do is just go for it. Hold nothing back and believe with your whole heart that everything will work out.

 

If you haven't already put the dots together as to why I decided to talk about my gymnastics and cheer life, let me explain. I wish I could have been there for my parents and brothers during Trent's first transplant because I would have told them the same thing I tell everyone in cheer: the first ones always the scariest, the hardest, and you will get through it. In our case, Trent had the right people surrounding him and the right amount of support and prayers going his way. And don't get me wrong, you will still go through hell stressing and wondering and crying and hoping and praying. I am not saying that if you believe everything will be okay, your whole mindset will do a 180 and stress and heartbreak will be lifted from your shoulders, but you will have hope. And sometimes, for some people, just having a little hope is enough to make it through any horrific experience.   


As I said before, I was born into this life, where my brother has already had a heart transplant and would eventually need one again. So, back in 2014, when I heard his heart had started to fail and he would need another transplant, my first thought was that he had been through this before and everything turned out okay then, right? He's done this before, he's got it. But before I knew he needed a transplant, I got a text. It was from my mom and basically said that Trenton had started chasing after a friends dog that ran into the street. Being the dog-lover he is, Trenton ran to catch the dog, eventually collapsing only to get as far as the sidewalk. His friend called for an ambulance which took Trent to Children's hospital where my parents met him. Later, realizing that he had experienced a minor heart attack, the text opened up reality to me, because while I have always known that he needed another transplant, I never thought about when. It was just this distant thought. Nothing REALLY tragic ever happened to him, at least nothing that I was ever worried enough to think he wouldn't get through, but this was real.  

 

During his time at the hospital, we were fortunate to have many families supporting us and bringing meals to the house. I remember holding the refrigerator door open and looking at my dad while he tried to fit another giant tin of food in. It was humorous and flattering the amount of food we received. People had signed up to bring something nearly every night when Dad and I were the only people eating. This leads to my next topic: independence. Most nights, I would wait for my dad to come home after work and visiting the hospital, so that we could have at least one meal together. Since Mom was with Trenton at the hospital, and Austin was in college, I spent much of the time by myself. Don't get me wrong, I think of myself as pretty independent, and I like spending time by myself. But I felt badly for my parents because I knew they felt badly for me. They tried so hard to spend as much time as they could with me, but obviously they couldn't just "hang out" with me for a whole day, because they had another kid, lying in a hospital bed, they had to get back to. They were apologizing to me for being absent. Can you believe that? They felt badly for ME because I was alone a majority of the time. This just made me love them even more. 

 

But I wasn't there for the first one. I wasn't there to support my family or tell them everything would be okay. Instead, I heard stories about it my entire life. When I tell people those stories, they feel badly for me, and take pity on me. Yet, when I tell them not to feel pity, that I'm used to it, and was born into it, they don't seem to understand. The thing is that I have never lived a life where my brother doesn't have to take like 20 pills day and night, doesn't have annual heart caths, can drink alcohol, and doesn't have a foot long scar running down his chest. I bet my family uses more paper towels than your family. I bet our meds drawers are bigger than yours. It's what I've grown up with and what I deal with as a sibling of a transplant recipient. And when I read that last sentence to myself, it almost seems selfish to say. I am not the one who has the foot long scar down my chest, has to take all those pills, or go to annual checkups. For anyone in the same position that I've been in my whole life, here is what I've gone through and experienced. I’m not giving advice on how to deal with the similar things you’re going through, but rather sharing my experiences so that you can understand what it's like being the sibling of a transplant recipient.  For me, it’s about being independent and understanding.

Allison

Val and I lost our third and youngest child to the adult world as she left for college a few days ago, so this is a tribute to daddy’s baby girl.

I love Valerie and there is no one who can replace her.  She was the only one with me before kids, and she will be the only one when the last of our kids are out and on their own.  There is no one who compares to her in my world.  That said, the second of three unique women in my life is Sweetie – Allison – the little girl I wanted long before she existed.

Early in 1998, learning Mommy would soon have a baby, three-and-a-half-year-old Trenton expressed his desire for a sister (his name of choice: EO), and he was available for consultation the day we learned the gender of employee #5 at Cary Enterprises.  Driving home from the obstetrician, with Trenton strapped into his car seat, Valerie said, “Well, it looks like you get your wish.  We’re going to have a girl,” to which Trenton reacted by throwing a fit and yelling, “I wanted a BOY sister!”  There is more, such as Trenton deciding he wanted the baby in his tummy, and asking his bulging mommy if a leg was sticking out, but let’s leave that to your imagination.

At the age of three, Sweetie tried ballet.  I have seen a pic, posted many times on Facebook, of a young ballerina with the caption, “Be this girl.”  Allie actually did this in class, which was a sign for Valerie that ballet might be too confining for Allie.

When Allie turned five, I told her that she was not allowed to turn six, and that if she did, she would be grounded until she went back to five.  She was my weekend workout partner and loved sprints and pushup and situp contests.  Her passion for conditioning and pushing herself led to seven years of competitive gymnastics, with 30+ hours per week of training, private schooling at the gym and fifty-one weeks of training between vacations.  This is a sample of their workouts, just the conditioning before the actual practice.

Of course, Allie has no connection to transplant number one.  She heard stories and saw the meds and doctor visits.  She had visited Children’s literally before she was born, and rode the halls in her stroller monthly into her toddler years, but it was all just regular life and part of a story until cancer.  Her brother’s cancer was Allie’s first experience with our family health challenges and she was thirteen years old in eighth grade at the time.  At that age, she was old enough to understand, mature enough to take care of herself and thoughtful enough to help.  She was also young enough to complain, but didn’t.

Allison was a reassuring connection to reality from my hospital surreality.  While I continued to juggle responsibilities of support for Valerie and Trent at the hospital, combined with work, home, bills, schedules and everything else that doesn't really matter at the end of the journey, Allie centered me, calmed me at the end of it all, more than she realized or attempted.  She was not normally proactive to help, but throughout this trek, she was there for whatever reality support I needed.  I handled stress throughout the day, allowing it to build up into knots at the upper portion of my neck, and Allison knew how to disintegrate those knots with her strong gymnast hands.  I would sit on the couch and relax my head back while Allie stood behind the couch, with her hands under my head, firmly pulling and stretching my neck and spine, allowing the stress to ease out from the vertebrae and prep me for a short night of sleep before doing it all over the next day.

Allie did dishes and laundry without being asked, stayed on top of her homework, never complained and seemed easy going and understanding about the disruption.  I wondered what she thought, and one night, not long into the journey, I found out. We were riding in the car, just the two of us.  The sun had fully set and the radio was playing, but otherwise, we had little conversation until Allie spoke up with no warning.

“Is Trenton going to die?” she asked calmly but directly.

A quick prayer for help shot through my brain as a moment of nonresponse filled the car.

“I don't think so, Sweetie.  He could, but they have a lot of data showing his kind of cancer is treatable and they think he will be fine.  They have some good meds for treating this, so I think it's going to be OK.”

My mind wandered for more answers, wondering which direction to take the discussion, if at all, and music from the radio covered the next minute of dead space in our discussion.

“Isn’t cancer hereditary?” she asked next.

A light bulb went off.  “You're worried about getting cancer, aren't you?” I inquired.

“Yes.”

“Well, I wouldn't worry about that.  Trenton's cancer was caused by his medications.  Our family doesn't have a history of cancer, so you have nothing to worry about.”

And, with that, she seemed satisfied.  I hurt knowing she carried that worry, but was thankful she shared it and we addressed it.

Between cancer and transplant number two was a staph infection on Trenton’s heart, and Allie showed she was thoroughly trained on disruptions to life’s “regular” schedules.  She learned our “routine” of preparing provisions of clothing, makeup, snacks and technology for Valerie to stay the night at the hospital.  If she felt discomfort in the sterile setting of ICU, with her brother hooked to multiple monitors and drips, she didn’t show it, instead choosing humor (the family M.O.) and tweeting selfies.

 

 

During heart transplant number two, Allie was completing the final few weeks of her sophomore year in high school, and thus, had become more independent.  She had friends to ride to school and cheer.  She was totally responsible for her homework, so Val and I never had that on our worry list.  She rarely ate dinner alone, however, as my goal was to make sure Val and Trent were fed and ready to settle in for a long night of short naps in his hospital room before I drove home to eat with Allie.  And Allie sat with me in the den, watching television after dinner.  We didn’t talk a lot, but we didn’t need to.  I knew Allie liked being in her bedroom, but hung around for me anyway; and hopefully, my being there helped her too.

Rarely did Allie and I get consumed with hospital details at night.  Valerie and I hid nothing from the kids, but those times at night, when it was just Sweetie and me, or in the morning before school, were for everything, and hospital updates were just one of multiple topics.  Allison caught me off guard one of those days when, soon after walking in the house one evening, I asked, “Good day?”  Allie replied simply, “If Trenton’s still alive.”

Trenton’s first transplant was in 1995, and we were pregnant with Allie only two years later, so it was no surprise to receive the occasional question, “How could you take a chance having another child after what you went through with Trenton?”  Our answer was, “How could we not, seeing the ways God was with us during the transplant experience?”  And so, I got my little girl, and I now have one of the most important women in my life, because we trusted God…and because we were still thankful.

P.S. OK, God, You trusted me with your little girl; I’ll trust You with my young lady.

Learn to hate

My brother, Danny, and I were walking our two boys at Sooner Fashion Mall (Sooner, because it’s in Norman, Oklahoma; and Fashion, because, in the early days, it was high-style with everything from Sears to Dillard’s, and J. Riggings to Famolare) in December, 1992 when we came across Danny’s next door neighbor, former Sooner football great and not yet senator J.C. Watts.  My son, Austin, was almost two years old; Danny’s son, Jaeton, was approaching three; and J.C.’s daughters were a couple years ahead of that.  Danny introduced us, we shook hands, and I said to Austin, “Can you tell his girls, ‘hello?’”  Austin didn’t hesitate in walking up to black J.C.’s black daughter and planting his white face against hers with a kiss on her lips.  To be clear, that is not how we taught Austin to greet strangers, but he saw no problem in just being “friendly.”

We are not born with hate.  It is learned and reinforced over time in a variety of ways.

We all come from different backgrounds, yet we like to find others who are similar to us.  We need that for support.  Those similarities come with patterns that are borne of similarities in our upbringing, our families’ histories.  Those become stereotypes.  Stereotypes themselves are not always bad and understanding them can help us connect with others who at first may not appear similar to us.  White men can’t rap, and don’t even start with Vanilla Ice and Eminen, because that’s where I rest my case.

Stereotypes are difficult, because there are positive and negative and both can possess truths, yet both can contain helpful or hurtful intent.  Don’t act as though we are all the same; we aren’t and that’s the wonderful variety of life.  On the other hand, don’t act as though someone is less than you are simply because of a stereotype.  As former President Bush commented, “Too often, we judge other groups by their worst examples while judging ourselves by our best intentions.”

Relying on stereotypes to defend our disdain for another can sometimes be due to our own greed, feelings of inadequacy or a lack of self-responsibility.  Someone is wealthy?  He probably didn’t earn it.  Your wife or girlfriend comments about a handsome man?  He’s probably gay.  You get the idea, so we won’t even discuss, “They’re fake.”  The bottom line is that we are often to blame for our supposed problems with others.  For an excellent understanding of how we can misunderstand someone due to blinders of stereotypes, I highly recommend the movie “Crash.”

And don’t assume laws are the solution.  You can’t legislate love or hate.  If you need a law to tell you how to treat others, you’re part of the problem.  If you claim the law is needed, not for you, but for someone else, you’re part of the problem.  A government can’t show love.  That’s a human’s responsibility.  Not once during our hospital stays have we been comforted by the IRS, DMV, EPA, DOE or HHS.  It was our family, friends, nurses and other caring people.  Laws did nothing to soften the heart of the Dallas sniper.  With our hearts and minds in the right place, our hands and feet should follow.  Dallas sports reporter Dale Hansen eloquently confesses his recent apathy here: 

Trenton’s two heart transplants taught me the emotional struggle of sorrow, joy and thankfulness all occurring in the same event.  We truly mourned the loss of our donors while rejoicing the life-saving gift we received.  After all these years, it’s still an uncomfortable tug-of-war, but one that has led me to seek true opportunities for thankfulness in what appears to be a total loss.  And right now, the media is focusing us on the loss, because fear sells.

 Dallas was wounded, yet we already won this battle one day later when one person’s display of hate was answered with thousands of displays of unity.  ONE horrific act of hate compared to THOUSANDS caring about each other.  Did you see the police car?  It was vandalized with love, covered in flowers and notes of support.  If we REALLY want to win the war, we must mourn those we lost (and if you know one of the families who lost a loved one, you may want to read my previous blog about empathy) while being thankful for the unity that has overtaken, and not be consumed by the hate of the few.  Do this and you will see how great my Dallas and your community already are.  Families questioning the senseless loss of their loved ones may eventually find comfort in knowing that good came the horrific event.  Most people don’t like change, so it’s an unfortunate fact that much pain comes from significant change, but it’s something we must continue.  See how we won this battle:

Every emotion with which we were born has its opposite and each exists for a reason.  Even anger is useful as a pressure relief valve, but we must control how we express it.  The one emotion with which we are born without its opposite, however, is love.  We are not born to hate; it’s taught through example and reinforcement.  This tells me something about the importance God places on love.

Austin and Trenton were blessed to have attended Cottonwood Creek Elementary in Coppell where student population was so varied that over thirty different languages were spoken (Allie attended a home/private school for elementary due to fulltime gymnastics).  For them, variety is the norm.  This variety makes them part of the generation providing solutions.  Austin, by the way, still kisses someone who is not identical to him.  His wife is an Oakland A’s / Golden State Warriors fan, yet Austin overlooks those faults in Kira and loves her anyway (such a fine boy).

Look back at the pictures of at the top of the page.  They are plants growing on the island of Visby, Sweden where Val and I visited a few years ago.  Select your favorite plant and stare at it for a moment.  Then look at the group and decide.  Would you prefer to live in a world with just your one favorite plant, or would you find more enjoyment living with variety?  Care for all kinds if you want your life to fully bloom.

 

“…faith, hope and love; but the greatest of these is love.”  For variety, for unity, for love…I’m still thankful.

 P.S.  If you agree with this, please pass it along; and if you don’t agree, don’t hate me.

 P.S.S. I hope you will take a moment to view two more awesome acts of caring that occurred from Dallas’s battle with hate.  Of course, being Dallas, it centers around good restaurants.

http://www.wfaa.com/features/new-york-police-officers-overwhelmed-by-texas-hospitality/274412773

 

http://www.bizjournals.com/dallas/news/2016/07/15/nick-sams-owner-former-nypd-cop-hosts-benefit.html?ana=e_ae_set2&s=article_du&ed=2016-07-15&u=p3%2BE8I3QQo7qnIhB857PERgPKE8&t=1468621457&j=74905542

I know how you feel - Empathy

 

It was early 1998, not long before Allison was born.  We had recently moved into our newly built house and piano movers arrived just before 9:00 pm on this evening with a baby grand that had been purchased new by my great grandmother in 1909.  As Valerie, Austin, Trenton and I sat on the staircase, watching excitedly as the piano was set in place, Val fidgeted nervously.  She had been trying to contact her mother all day without success, and could no longer contain her worries.  “I wonder where she is.  I hope she’s OK” Val repeatedly thought out loud.  Sensing her concern, Trenton did his best to comfort her.  In the sweetest, most reassuring voice a little boy could muster, four-year-old Trenton said, “Well, Mommy, maybe she’s dead.”  Different people empathize in different ways.  Some of us just may need a little help.

 

When Trenton first arrived in the intensive care unit in March, 1995 he was placed in a room next door to a teenage boy named Zack.  Zack had his own set of problems arising from an extended stay at Children’s Medical Center, but he had received relief from a heart transplant just days before we arrived.  Seeing him leave ICU about a week later gave us relief too, as we were just beginning to explore the possibility of a heart transplant for Trent.  That kind of surgery was frightening, so Zack’s apparent success gave us reassurance that we had a workable solution.

 

Friends and family were the first to teach Valerie and me the comfort of empathy.  Their love was often shown through service, whether someone was delivering food, caring for Austin, sitting in ICU with Trenton so Valerie and I could rest, or even cleaning our house and redecorating (yes, redecorating our house, and they even rehung pictures).  Equal to these for me was knowing the pain these people felt for us.  In person, it was people like Valerie’s brother, Vernon, standing at Trenton’s bedside, crying at the sight, but there was a more subtle expression of empathy I also appreciated.  A friend had set up a phone number for anyone to call in for an update (it was 1995, so few used email or web sites).  The friend left a daily voicemail of Trenton’s status, and callers could leave reassuring messages that I checked each day.  What caught my attention was the number of people who called and left no actual message.  Knowing someone was calling solely because they were interested in Trenton was comforting in itself, but some DID unknowingly leave a message.  Occasionally, a caller did not hang up fast enough before the recording began and I was able to hear one second of a slight sniffle or whimper of a cry.  Someone, and I wouldn’t know who, was feeling our pain.  Yes, I guess misery really does love company.

 

Trenton had three nurses caring for him in shifts and Melissa was on duty the morning of Trenton’s surgery.  Valerie was resting in the ICU “family bunk room” at the time.  The family bunk room was a quiet, unlit room attached to the ICU waiting room, with bunk beds, all with their own curtains and each family assigned a bunk.  Val never slept well in there, fearful the next light to shine into the room would be a nurse coming to tell her we had run out of time. This evening, at midnight, Melissa entered the room and grabbed the curtain, causing Valerie to start shaking.  Thankfully, Melissa was alert to this fear and quickly shared the news, “Good news!  We got a heart!”

 

Although her shift had ended, Melissa stayed at the hospital until the transplant surgery was complete late in the morning.  That afternoon, she called me from her home, saying, “I could get in trouble for telling you this, but I’m so freaked out, I need to tell you that I know who the donor is!”  While telling a neighbor about our transplant, the neighbor informed Melissa that a baby in their neighborhood had died the day before.  The two compared notes and realized it was Melissa’s neighbor who was the donor.

 

I attended the funeral for baby David a few days later, sitting near the back of the sanctuary, out of eyeshot as I watched his parents, Gary and Sarah, walking to the front row.  I was draped in pain and sorrow.  It was terribly uncomfortable attending a funeral 1) for a baby, 2) for a stranger, yet 3) someone who meant so much to us by having a life-saving impact in our lives.  That said, I knew it was nothing compared to Gary and Sarah’s pain, and it was the least I could do, although little did I know at the time we would help them during a chance meeting one year later (but that’s a story for another time).

 

So, why did I mention Zack?  A month after attending David’s funeral, I sat at Zack’s funeral, wondering if this would become the routine of a transplant family.  Afterward, I wrote a brief comment in my journal when I arrived home.  “I am going to my second funeral in just over one month, both for children.  It’s uncomfortable.  You don’t bury your kids…I hope these funerals don’t get easy.”

 

Jump forward eighteen years to 2013.  A friend in Oklahoma informed me of a family she knew whose daughter, London, was in ICU with serious heart problems at Dallas Children’s Medical Center.  I visited the Facebook page created to update family and friends on London’s status (gone are the days of voicemail updates), and I read every word of every post…and the pain came back as fresh as if reliving our own experience.  I prayed multiple times for London and her family, and with each prayer I said, “Thank you, Father, that this still hurts.”

 

My first blog mentioned how Trenton blessed us with survival, and while that is true, it is incomplete.  We have also been blessed with a stronger ability to feel someone else’s pain, and while it doesn’t feel good, it’s a blessing to 1) be in a position to know how it feels, 2) know that it may be all that is needed to provide comfort to someone, and 3) be human.

 

This is just a suggestion.  If your friend is a pile of mush, suffering through a trauma you have not experienced, don’t think you too need to be a pile of mush and take on their painful emotions in order to be of service to them.  Think about how you would feel in their position and what would give them comfort at that time, and then be their rock and their servant (that has always been my brother, Danny).  If they feel the need to be in pain, instead of trying to talk them out of it, feel their pain (being thankful that you can), remembering there is reason and purpose in pushing through to another day, and that you can help carry them there.  Those of us who have lived their pain can be a pile of mush with them, but we also must be the connection back to their survival when they may not see it.

 

If you think empathy is necessary only when a family member or close friend is suffering, consider how divided we have become in America, whether by race, religion, financially and/or politically.  A black person is shot by a white policeman and our Facebook timelines explode with opinions of how one or the other is to blame.  Instead, realize the sadness of a life cut short, a family in mourning, and the risk a police officer takes every day in just doing his or her job.  Currently, the internet is overflowing with millions of self-anointed zoo “experts” opining on who is to blame for a boy getting into a gorilla cage at a Cincinnati zoo.  Did you know the mother received death threats?  I’m not aware of a time that death threats have helped a woman who either made a parenting mistake or was simply raising a mischievous kid.  In elementary school, Trenton and a friend, Dru, once went to the Vice Principal’s office for throwing rocks at the school during recess.  When put on the spot, Trenton explained, “I was throwing rocks at Dru’s rocks so they wouldn’t hit the school (full disclosure: when first hearing this story from Valerie, I replied, “That boy’s gotta learn how to lie better.”).  I’d like to take this moment to actually thank all the other parents of Cottonwood Creek Elementary for not sending death threats to Valerie and me.  Think, feel and act out of love and empathy.

 

Back to baby London.  How is she two years later?  She’s excellent and has a baby brother.  She will eventually need another surgery, but London is doing well and growing, and for that I’m still thankful.

 

P.S.  Pic 1: Could you discipline that face?  Pic 2: Our first donor family, the people who made our life story possible.  Pic 3: Allison recently graduated high school and will attend the University of Oklahoma this fall.  Why did I post it?  Because this is my blog and I get to post what I want.

Valerie

Blog Pic Valerie.jpg

 

Through the birth of Austin, Valerie dedicated her life to being a mother.

Through the growth of Trenton, Valerie sacrificed her time, effort, heart and tears showing the depth of her care for her kids.

Through the maturity of Allison, Valerie sacrificed her clothing, bras, shoes, jewelry, conditioner, makeup, flatiron, blow dryer…

I had another blog ready to share this month, but after posting the above comment to Facebook, I decided to share some thoughts on Valerie ( or “Trenton’s mom” as she’s also known).

What does it take to be Valerie?  When we first met, all I needed to know was that she had a look similar to Linda Ronstadt and Jackie Onassis, and she didn’t get that “I smell a dead skunk” expression on her face when she saw me approaching.  I could explain more of the physical details, but my kids read this blog, therefore, to save my family from nausea and therapist bills, I will move on.

I recall lying on the bed with Val when we were eight months pregnant, watching a small bump move across her bloated tummy.  It was Austin’s fist.  Val had also begun feeling a pain around her left rib at the same time her right pelvic area ached.  Her doctor would later explain that what she felt was the baby stretching.  Two months later, “Baby A” was lying between us on our bed, stretching his arms and legs as I watched in awe.

Austin was an ADORABLE (get that? A-FREAKIN-dorable) toddler physically, verbally (we let him answer the phone at the age of three) and fashionably, and Valerie eagerly supported all the above, as did her mother who worked for Neiman Marcus.  By the time he could walk, Austin recognized the logos of Domino’s, McDonald’s and “Meemans.”  For Valerie, this time of life was maintenance and PR for Baby Gap.

And then there was Trent.  Born with a pile of bright red hair that spiked in every direction when freshly washed and blown dry, his first haircut was at five weeks old.  It was more of the same PR for the first eleven months until our transplant life began and Valerie was driven by emotions and desperation.  She (we) had no clue, no experience, no baseline for making judgment.  Don’t feel badly when you are in the same position your first time; after all, it’s your first time.  Thankfully, we had mothers.  Mothers delivered food.  Mothers took care of Austin.  Mothers took turns sitting awake all night in Trenton’s ICU room so Valerie could sleep.

A couple years later, when life became more routine, Val and I were (mostly) in agreement as to how the kids should be raised, so I was caught off guard when I noticed Valerie letting Trent, now at the “testing” age of three, get by with mischief I knew Valerie knew was unacceptable.  When confronting her, she expressed to me what both of us had felt, but never discussed.  “I don’t know how long I have him.”

Immersed in over a decade of Indian Guides, soccer, tae kwon do, school, snot, Lion King videos, black olive pizza, homework, baby sister, band and video games our lives had become encumbered by the demands of normal life, thankfully distracting us from the detour of the hospital path.  When the next detour appeared in the form of cancer in seventeen-year-old Trenton, Valerie was sucker punched, but a veteran, trained by monthly hospital visits, doctor conversations and insurance phone calls she kept her fighting stance externally while she wanted to crumble on the inside.  She and Trent spent the first night of this journey in the ER at Children’s Medical Center, awaiting test results as they basked in the annoying fluorescent lights.

 Having returned home late that evening to be with Allison, I awoke quickly when the phone rang at 5 AM the next morning.  Valerie was calm and collected.  “Hey. We got the test results a couple hours ago, but I wanted to let you get some sleep.  Trenton has a tumor in his abdomen and they’re going to operate later this afternoon to see if it’s malignant.”  After disconnecting, the first thing to enter my mind was Val’s composure.  I could tell from experience that her soft voice indicated she was in Trenton’s room, wanting to show no emotion with him nearby.  Thankfully, we had mothers during our cancer battle.  A mother knit an alpaca cap for Trent.  Mothers took care of Allison.  The Executive Director of Trenton’s school, also a mother, organized her staff to accommodate Trent being out of school for four months, so he could still graduate on time.  And mothers delivered food.

 Two decades of medical experience (I refer to her as our family doctor) has provided Valerie with ample training.  She converses easily with medical staff and has occasionally corrected them; tracks closely the medications prescribed; and understands the how/what/why of a variety of procedures.  She knows the machines and monitors and how to read them.  She has dealt with practically everything the mother of a transplant kid can experience in logistics, processes and administration at a hospital.  Has that “strengthened” her?  Not exactly.  It’s trained her for managing the setting, so she is competent in that environment.  However, when the whole setting goes downhill, she follows it, understandably.  Two years ago, when Trenton arrested following a routine procedure, Valerie melted to the floor in tears before I could even fully comprehend what the cardiologist was telling us.  Nonetheless, while her right brain erupted, her left brain continued to analyze, as she asked questions and made comments indicating her understanding of our predicament.  Thankfully we had mothers.  At our lowest point, when we believed we had just lost Trenton, I felt I might not be enough to help Valerie through her mourning.  I needed the help of a mother, and one came.

 So, here’s the inside scoop, and back to the question: what does it take to be Valerie?  Love, sacrifice, hard work and caring.  It’s not complicated but it’s often not easy.  It’s being a dedicated mother.  When you are in the same position, and you love your kids, you will do whatever it takes, and it WILL hurt, but you can survive.

 For mothers…I’m still thankful.  Happy Mother’s Day.

 P.S. – Valerie had a nice surprise of flowers from Austin on the Friday before Mother’s Day and she texted her thanks to him.  Austin later sent the following screen shot to me with the comment, “Your move.”

Trenton's story

My first blog explained why I created this site.  Now, I want to give you a brief history of what happened.

Valerie and I were raising two cuuuuuuuuute little boys in late February, 1995 when the younger, eleven-month-old Trenton, lost the strength to breathe while being treated in the ER at Dallas Children’s Medical Center.  Prior to this, we had no idea Trenton was ill, but now we discovered his heart was enlarged and Valerie had just saved his life by taking him to the hospital.  Four days later, Trent arrested and we lost him for nine minutes.  Doctors called it a one-in-ten chance that he would come back and yet he did, but he likely wouldn’t live more than two weeks without a heart transplant.  Less than three days after being listed, Trent received what the surgeon called an “ideal” heart.  And, less than two weeks later, on his first birthday, Trenton came home.  I attended the funeral for the donor baby, but that’s a story for another time.

Normal life was meds every six hours, checkups monthly, and a full day of exams at the hospital annually.  It may not sound normal, but when that’s all you know, it’s normal and that’s OK.  Immunosuppressant meds come with a roulette wheel of potential side effects and the wheel stopped for Trent on cancer when he was a senior in high school.  The highlight of this adventure was not chemo, baldness, or hospital visits in the middle of the night.  Rather, it was Trenton’s attitude.  He never complained, and even told a friend, “I’ve been through worse than this; I’ve had a heart transplant.”  He also showed no emotion at the last oncology appointment when we learned the chemo worked and we were done with treatments.  Afterward, I asked Trent, “So, what did you think of the news?”  Trent responded, “I knew it.”

Just before graduating high school (on time, in spite of being out of school for four months), Trent was granted a wish by Make-A-Wish Foundation.  A friend from his senior class, Rachel had lost her mother to cancer just before Trenton’s chemo began; so Trenton asked, “Could I give my wish to Rachel?  She’s been through worse than I have.”  That’s not how it works, so Trenton was granted his wish - we met Metallica, but that’s a story for another time.

Trenton began his freshman year in 2012 at the University of North Texas in Denton partly to be near home (a half-hour drive from our home) and doctor Mom.  He was obviously excited about apartment life his sophomore year in 2013, so it was reason for concern the day Valerie helped him move in that Trent didn’t feel like staying the night.  It was the right decision, because although doctors said to watch Trent that night and bring him in the next morning, Valerie saved Trent’s life again by making the decision to overrule the doctors and drive immediately to Children’s.  Soon after arriving at the ER, Trenton’s fever spiked over 104, his blood pressure was dropping rapidly and two bags of IV were quickly sweated out.  Blood pressure finally began to stabilize after lowering the head and raising the foot of his bed for the blood to circulate back to Trenton’s upper body, but this effort continued throughout the night before finally settling at a satisfactory level.  The next two days required gowns and masks as we were unsure of the source of infection.  Eventually, it was determined that a procedure the previous month had led to an infection on Trent’s heart.  Equipped with the cause, we could then receive the cure, but again Trenton didn’t complain, especially when he was able to eat regular food (ICU nurses at a pediatric hospital are not used to seeing the pizza guy delivering to patients).

Valerie is good at worrying, especially about Trent.  In fact, I think she may sometimes worry about not having something to worry about.  Her worries about the effects of the heart infection were confirmed, however, in March, 2014 when the cardiologist informed us that Trenton’s body was beginning to reject the heart, and another transplant would eventually be required.  Trenton nonchalantly stated, “Well, it’s got to be June or July, because I’m busy with school.” 

Trenton suffered a heart attack on May 21 while running at a friend’s house and was taken by ambulance to Children’s.  The following day, after a regular procedure, his heart stopped beating and he left us for six minutes (but that’s a story for another time).  A few days after recovering, Trent was transferred to Baylor hospital in downtown Dallas, because they were the only program willing to transplant him after being just two years cancer-free.  Nine hours after being listed, Trenton received his second heart transplant.  Baylor’s promotional video for their transplant program, featuring Trenton, can be seen here:

 

 

Recall Trenton’s requirement that he not miss school.  The spring semester ended May 10th.  His heart attack was May 21st.  He was transplanted May 31st.  He left the hospital June 17th.  Rehab lasted until the end of July.  A week later, he moved into his fraternity house.  A week after that, he started the fall semester of college – missing no school.  How’s he doing since?  He’s fine, living the normal life of a college student…but that’s a story for another time.

 Still thankful.