Trapped Within

It has been a few weeks since my last post, and I’ve received some questions lately as to what’s going on in my life and why I’m not posting. So, I’ve decided it’s time for an update. My MIA status is largely due to the fact that I’m in the middle of writing a book about TJ’s story.

Throughout TJ’s illness, I felt God leading me to write about the experience. About a year ago, I began writing the book, and after completing about 100 pages, I became overwhelmed and disillusioned with the publishing process and stopped.

Recently, my husband Travis encouraged me in a round-about way to get back to writing. After TJ died Travis told me to take a year off to grieve before going back to work. Well, a few months ago, he began leaving hints here and there that a year has come and gone. When he saw my reluctance to begin the job search, he told me if I finished my book, I could wait a little longer. That was all the motivation I needed!

The book is titled Trapped Within

I clung to the Bible verse Jeremiah 29:11 throughout TJ’s illness and death. “‘For I know the plans I have for you’, declares the Lord, ‘plans to prosper you and not to harm you, plans to give you hope and a future.'” I believed those words and trusted that even with a brain injury, God still had a plan for my son and would give him hope and a future. This verse meant so much to me that it is even on the back of TJ’s headstone.

In hindsight, I believe God’s plans for TJ’s life was to point others to Jesus during his season of suffering with a brain injury. His testimony during that season is powerful, and he is now prosperous and reaping rewards for his faithfulness.

As I’ve been reading over TJ’s Caring Bridge posts, I came across a poem my husband posted several years ago. I love this poem, and it reminds me that what God values is different and better than what I value.

The Prayer of an Unknown Confederate Soldier
I asked God for strength that I might achieve.
I was made weak that I might learn humbly to obey.
I asked for health that I might do greater things.
I was given infirmity that I might do better things.
I asked for riches that I might be happy.
I was given poverty that I might be wise.
I asked for power that I might have the praise of men.
I was given weakness that I might feel the need of God.
I asked for all things that I might enjoy life.
I was given life that I might enjoy all things.
I got nothing that I asked for,
but everything I hoped for.
Almost despite myself,
my unspoken prayers were answered.
I am, among all men, most richly blessed.

I still plan to post on my blog, but it will be sporadic. I’m hoping to send the book to the publisher by the end of the year, Lord willing. God has provided me with an amazing editor, and I’m excited to see what becomes of all this.

War Buddies

The PICU at Mayo Clinic is in the shape of a horseshoe with patient rooms occupying the outside of the curve.  A walkway connects the rooms and curves from one end of the horseshoe to the other. In the middle are desks, computers, and medical equipment.  The nurses told me the sickest kids are in the corner rooms because the corner rooms are the largest. The sickest kids have the most equipment and need more space.  TJ was in a corner room in the left corner of the horseshoe.

A couple of weeks after arriving at Mayo Clinic, a young man was admitted into the other corner room next to TJ’s.  He was very sick. Although I had seen his family coming and going, I never spoke to them. One morning I entered the PICU and noticed the young man’s room was full of medical staff.  Because I had the same experience a couple of weeks prior, I knew what that meant: He wasn’t doing well. I watched the young man’s mom entering and leaving his room. I wanted so badly to talk to her. However, because I didn’t want to intrude on her privacy, I kept to myself.

A few days later, I finally introduced myself.  I learned the young man’s name was Tom and his mom’s name was Janet.  They were from Wisconsin and were quite familiar with Mayo Clinic as they had been there many times before.  During this hospitalization, Tom was fighting Leukemia, but he’d had a variety of health issues for many years prior.  During our initial meeting, I learned that we weren’t going to be neighbors for long because Tom was being moved upstairs.  Before he left, I told him I hoped one day when he and TJ were better, they could meet.

After our meeting, Janet quickly became my closest friend at the hospital.  We ate lunch at the Canadian Honker, took coffee breaks at the Caribou across the street, and once in awhile went for ice cream.  We laughed and cried together and encouraged one another with God’s Word. We even looked somewhat alike, and the nurses from time to time got us confused.

Because she had dealt with serious illness before, Janet was great at giving advice.  I learned many things from her about hospital life and what life would be like when we got out.  Tom also had Down’s syndrome, and Janet taught me many things about special needs and helped me with the transition of TJ being a typical child to TJ becoming a child with special needs.  She built TJ up and told me he was still a cool kid even if he couldn’t talk. I never forgot that.

TJ and Tom were admitted to rehab at the same time, and they were finally healthy enough to meet.  Tom and Janet were now just down the hall from TJ and me, and we visited them frequently.

Sometimes during therapy, TJ and Tom were in the gym at the same time.  From across the room, Tom would yell, “TJ, work hard! Listen to your mother!  May the force be with you!” TJ would then throw his head back, make a loud humming noise, and shake his head back and forth.  That was how he laughed.

Many times during physical therapy, they both walked back and forth in the gym with their therapists, and as they passed by one another, they held their hands up high to give one another a high five.  However, because TJ had eye deficits and had trouble judging distance, they oftentimes missed each other’s hands. They were quite entertaining to watch.

Tom and TJ a few days before discharging from Rehab wearing their matching “Repaired in Rochester” shirts
August, 2013

These special boys had fought many battles to recover their health, and now they were doing well.  They were discharged from rehab within a couple days of each other, and we hoped one day we would see each other again.

Early in the year of 2014, while TJ was at the brain injury rehab facility in Iowa, he had his yearly appointment at Mayo for a heart checkup.  While in between appointments, we sat down to wait in a waiting room in the Gondola Building. I sat in a seat under the windows, and TJ sat directly across from me.  From where he sat, he could see down the hallway, but I could not. As we waited, I saw him looking intently down the hall, and then his eyes lit up. I assumed that someone he knew from the medical staff was walking toward him, but I could not see who it was. Suddenly, Janet and Tom came into my view. What a pleasant surprise!  Neither of us knew the other had appointments that day in Rochester. We just happened to be there on the same day, at the same time, and in the same building. Because I don’t believe in coincidences, I believe it was the love of God allowing two old war buddies to see each other one more time.  We visited for a while and were sad when it was time to tell our friends goodbye and go to our next appointment. It was the last time TJ ever saw Tom.

Tom and TJ during our unexpected visit at Mayo Clinic February, 2014

About a year later, Tom’s Leukemia came back, and after a long, three-year, hard-fought battle, he passed away in late summer of 2015 at the age of 21.  After hearing the news, TJ lay on the floor of our family room sobbing. It was a sad time. Two and a half years later, TJ would also pass away at the age of 21.

After taking some time to recover from losing our sons, recently Janet and I started a tradition of meeting once a year for a weekend. During our visit, we spent the weekend laughing, crying, and talking about our sons and the memories they left. Now that TJ and Tom are together in heaven, we wonder if they laugh and talk about us, too.  Imagining them both healthy, joyful, together, and not in pain anymore is a comforting thought.

I’ve heard it said that the death of a child is one of the hardest things a person can ever go through.  I am very grateful for the friends the Lord has given me to help lessen the pain. I am among all truly blessed.

“From his abundance we have all received one gracious blessing after another.
John 1:16

Dr. Laundry

During TJ’s first hospitalization at Mayo, his diagnosis was unknown.  Doctors felt he became low on oxygen during heart surgery and had a hypoxic brain injury or a brainstem stroke, but diagnostic studies did not match his symptoms. Doctors were puzzled. TJ’s unknown condition tormented Travis and me. Questions like “What happened to our son?” and “How can we help him if we don’t know what’s wrong?” plagued us day and night.

Since I had seen TJ walking and talking in Des Moines for a week after his heart surgery, I truly didn’t believe he was as bad as the doctors at Mayo said he was.  Nevertheless, they advised us that he probably would go home with major deficits and we needed to start preparing ourselves for that truth.

TJ was admitted into rehab twice at Mayo. After just a few days there, his health declined from lung and intestinal infections, and he unfortunately was sent back to PICU.  After four months of battling his brain injury and constantly bouncing from floor to floor, TJ finally went off to rehab for a third time in August of 2013 and finished.

While in rehab, much to everyone’s surprise, TJ began improving rapidly.  It was almost as if a light switch in his brain had been flipped on. He was getting stronger and could walk on his own with just one person gently guiding him.  He started talking and every once in awhile could blurt out an entire sentence. His eyes were improving, and he was starting to swallow again. TJ’s sense of humor was also back in full force.  He enjoyed joking around with his doctors and therapists and was especially fond of tormenting his pediatric physiatrist, Dr. Landry.

Directly across from the bed in TJ’s rehab room was a white board with the names of his rehab doctors and therapists.  One morning TJ arose from bed and decided to go for a little stroll across his room. Not knowing what he was up to or where he was going, the nurse’s curiosity was piqued, and she let him lead the way while holding his waist from behind to keep him safe.  A very determined TJ, intent on a mischievous mission, walked over to the white board and erased Dr. Landry’s name with his fist. In its place he wrote “Dr. Laundry.”

When I arrived at TJ’s room later that morning, the nurse excitedly — and with a few giggles — retold the story and added, “I wonder how long he has been lying in that bed, staring at that board, and planning to change Dr. Landry’s name?!”

TJ & Dr. Landry
August, 2013

The news of TJ’s mischief spread across the rehab floor, and much to Dr. Landry’s chagrin, medical staff also began referring to him as Dr. Laundry.

A few days later when Dr. Landry entered TJ’s room for morning rounds, TJ was in the bathroom with his nurse.  When TJ heard Dr. Landry’s voice, he picked up the dirty laundry from his bathroom floor, and with his nurse in tow, walked out of the bathroom and threw the dirty laundry at Dr. Landry.

And then the battle was on.

Days afterward, when TJ was walking down the hallway with his physical therapist for afternoon therapy, Dr. Landry, walking a short distance ahead of him, suddenly turned around and began shooting TJ with a Nerf gun which left TJ ducking, dodging, and to his therapist’s dismay, trying to chase Dr. Landry down.

Rehab was a blessed time.  It was a time of excitement, laughter, and happiness, and it left us with a lot of fond memories.  TJ was improving, and we were hopeful again.

TJ & Travis walking in the courtyard at Mayo
August, 2013

As we were nearing TJ’s discharge date, I discussed what his future would look like with staff.  Doctors said they saw no reason why his improvement shouldn’t continue. Since he was already doing so well walking, there was no question he would walk on his own again.  His speech therapist thought that he would talk again, although his voice might sound different. Swallowing was still very difficult. His therapist was somewhat reluctant to say he would eat again but finally gave in.  Doctors thought his eyes would recover but would take up to a year. They felt he would have some coordination issues and things wouldn’t be exactly how they once had been but said he would go to college and do most anything he wanted to do with accommodation.

We were thrilled.  TJ was going to have a life again.  We had been through four months of uncertainty and unimaginable pain and suffering, but we had gotten through it. We were excited about the future.

On September 3, 2013 four-and-a-half months after surgery, TJ was discharged to home, but when we arrived home, after just a couple of days, he began to decline rapidly.  His body was starting to do strange things. His arms were twisting into strange positions, and his walking was getting worse. One person couldn’t walk alone with him anymore.

After another two-and-a-half-week hospitalization in Des Moines for an intestinal infection, his twisting became so severe that his shoulder and wrist were dislocating and he was arching his back so bad that it was cutting off his airway.  The twisting lasted all day. The only time he received relief was when he slept at night. His suffering was severe, and there was nothing we could do to help him. In early October, I asked for a transfer back to Mayo, so he was loaded up onto a helicopter and flown to Mayo for a second time.  After diagnostic testing was completed, doctors were perplexed because according to the MRI, the part of the brain that would cause these movements didn’t show any injury. Doctors were unable to explain why this was happening.

About a year later, TJ finally came home to live, but he never recovered back to his prior condition at Mayo. He was never able to walk on his own again. His arms were twisted over his head most days and unusable. His eyes didn’t move well, swallowing was minimal, his mouth was hard to open, and only twice in four years did we ever hear him speak again.

Many times since, Travis and I have wondered why, after all we had been through, God would give us so much hope in rehab only to take it away again a short time later. After six years of wondering why, we still don’t know the answer to that question.

If I didn’t know God better, I could easily mistake the reason for His silence and believe that He is a cruel, uncaring, detached God who must not love me.

However, that is not the God I know.

Because the God I know says He loves me with an everlasting love.  (Jeremiah 31:3)

The God I know leads me in paths of righteousness. (Psalm 23)

The God I know sent his Son Jesus to die so I could have eternal life.  (John 3:16)

The God I know calls me His child.  (1 John 3:1)

The God I know says He walks beside me through the valley.  (Psalm 23:4)

The God I know says He will be with me always, even to the end of the age.  (Matthew 28:20)

That is the God I know, and He is God Almighty.

What about you?  Do you sometimes feel God is silent and aloof while your heart is breaking?  Or do you sometimes doubt that God is good because tragedy has struck and your questions about why are going unanswered?

Many times during TJ’s illness, God showed me that He was with me and was walking right beside me. However, there were also long stretches of time when I felt alone and couldn’t feel the Lord’s presence. What do we do during the times when we don’t feel God near?

We trust and believe God’s Word.

Because God says repeatedly in the scriptures that He loves us and is present, we can rest assured that He is, whether we feel His presence or not.  Even Job, whom God called blameless and upright and one who feared God and shunned evil (Job 1:8), was struck with tragedy and unanswered questions while God remained silent.  So, if even upright and blameless Job experienced God’s stillness during tragedy, then we must expect that we will too. If we always feel God’s presence and know all the answers, then how would our faith ever grow?

In times of valley walking, trust that God loves you and is there.  Remind yourself often of times when You did feel Him walking beside you. Then you will find rest, strength, and courage to face another day.

“And He said, ‘My presence will go with you, and I will give you rest.’”
Exodus 33:14

He Ain’t Heavy; He’s My Brother

“What I am doing you do not understand now, but afterward you will understand.”
John 13:7

TJ had a sister named Chandler.  They were three years apart and were the two youngest of our five children.  They had the typical sister-brother relationship growing up. They loved each other, they hated each other; they fought, they made up; they were embarrassed of each other, they defended each other; they told on each other, and they covered up for each other.

TJ was the compliant younger child, and Chandler was the bossy older sister.  Chandler pretended she was the mother, and being the easy-going child that TJ was, he did whatever she told him to.  They were the perfect match. She dressed him, carried him around, painted his fingernails, and styled his hair with barrettes.  Other days she lined TJ and her stuffed animals up in her room and made them sit at attention while she played teacher and gave them homework, and once in a while she drove TJ around in her little pink motorcar.

Chandler & TJ, 2005

They shared a close bond and were the best of friends.  It’s hard to find a picture of them when they were youngsters without their arms around each other.  They raised hamsters together, planned practical jokes to play on their father, and spun cars in circles on Ashworth Road when they were teenagers, which I didn’t find out about until TJ’s funeral.  They were definitely partners in crime.

Chandler was married in January of 2015.  TJ was two years into his brain injury and had just moved back home two months prior.  Chandler wanted a simple wedding at home with just a few close family members. Her wedding venue was our family room.  It was a beautiful, intimate wedding. After the ceremony, during pictures, TJ broke down and sobbed, and the entire room began wiping their eyes as they watched this young man struggle.  I never asked him why he was so upset, but I believed it was because the days of them being kids together was over. Life had now changed drastically for both of them and they could never go back to the way things used to be.

Chandler & TJ
January, 2015

After they were married, Chandler and her husband Julian moved to Cedar Rapids, which is a city two hours away from Des Moines, but they were still close enough to come home quite often to visit and spend time with family.  Many times while Chandler was living there, she expressed that she was homesick and wanted to move back to Des Moines but was unfortunately unable due to jobs and financial reasons. Finally, after a few years of living away, in the fall of 2017, they were unexpectedly in a good place where it was the perfect time to move back home.

Chandler & TJ
Summer, 2017

At the time of their move, Julian was blessed with a work-from-home job, and only Chandler had the task of finding a new job.  In the summer of 2017, we began self-paying for caregivers, and since Chandler was moving back, we struck up a deal with her to be his caregiver for a while until she found a permanent job.  It was a win-win for all of us.

But just a couple of days after she moved home, TJ was admitted into the hospital for what was to be his last time, although we didn’t know that at the time.  Whenever TJ was in the hospital, we generally never left him alone because communication with the nursing staff was very difficult, so Chandler took the evening caregiver shift.  She was wonderful at it. She took ownership of it and having her there gave me a tremendous break. She was fiercely protective of him and was his biggest advocate……but she also made him do things that he didn’t want to do, and now that he was older, he wasn’t so compliant anymore.

One day Chandler gave TJ a shower, and he was irritated with her.  When she tried to clean him on the right side, he moved to the left.  And when she tried to clean him on the left side, he moved to the right.  After struggling with him for 45 minutes, she told him it was time to get out.  But TJ didn’t want to get out, so he wrapped his arm around the shower bar and held on for dear life as she pulled and tugged.  And when she finally got his arm free, he then pushed his leg against the shower wall to brace himself so that she was unable to move him.

And then my phone rang.

“Hello,” I answered.

“Mom, TJ isn’t listening to me,” Chandler said.  “He has been in the shower for 45 minutes, and he won’t get out.  Therapy is coming in soon, and he needs to get ready.”

“Ok, put him on speaker,” I said.  “TJ, knock it off. Get out of the shower.  You need to listen to your sister. This is already hard enough, and you don’t need to make it any harder.”

That was all it took, and then he got out.

Many times during this hospitalization, Chandler expressed frustration about TJ being in the hospital.  When she moved home and became his caregiver, she was looking forward to hanging out with her brother again and doing fun things together, like going to movies, bowling, and shopping.  But since coming home, all they had done together was sit in a hospital. She couldn’t wait for him to get healthy again and be discharged.

Chandler & TJ, February 2018
(Taken a couple of weeks before
TJ passed away)

But as the hospitalization drug on and TJ’s health declined, for the first time, Chandler began to understand how stressful and exhausting it was taking care of him.  Many times while on her way to the hospital, she called crying and said she was so anxious about taking care of him. Because he was unable to talk and was too weak to sign, it was impossible to figure out what he needed.  When we couldn’t figure it out, he became agitated and upset. It was miserable for both TJ and the caregiver. We felt incredibly sorry for him for the pain and suffering he was going through, and we constantly felt like we were failing him.  It was a lot for a young woman in her 20s to go through.

By the end of TJ’s three-month stay in the hospital, his lungs had been destroyed by either cavitary pneumonia or blood clots.  Doctors told us that even if he did live past this illness, the cavities in his lungs would fill up with fluid and he would get infection after infection and the infections would eventually kill him.  That was brutal news for a sibling to hear. Chandler was grief stricken to lose her brother and went home every night researching other hospitals we could transfer him to and different procedures we could try like lung transplants in hopes of prolonging his life.  However, her father and I instinctively knew that this was the end. We had done all we could do for him and taken him everywhere we could think of, and it was time to let him go. Death is incredibly painful, and it was hard watching both of our children struggle.

Months after the funeral and shock wore off, although Chandler was still incredibly sad, we began to see a beautiful spirit emerge from inside of her.  In the beginning of TJ’s hospitalization, she was frustrated and didn’t understand why God would bring her here to be TJ’s caregiver just to sit in a hospital day after day with him, but after TJ’s death, she was able to look back and see God’s loving hand orchestrating her move back home at just the right time so she could spend every single day of the last three months of TJ’s life with him.  What a blessing she had been given from the Lord.

There are many times when we do not understand what God is doing in our lives.  And quite frankly, sometimes it looks like He is doing everything wrong and we could do it better if given the opportunity.  When everything around us starts to crumble, we must resist the human urge to grumble against Him and trust that He is always at work, that He always has a plan, and He always has our best interest at heart.

God loves us, and even though we may go through incredibly painful events in our life, if we choose to focus on Him and not on our circumstances, we will see His loving hand guiding, directing, and providing for us.

“Faith is trusting in advance what will only make sense in reverse.”
Philip Yancey

Praise You In This Storm

TJ’s heart surgery took around six hours.  Throughout the surgery, a nurse went back to the OR and checked on the status of how things were going.  At each check-in everything was going well. Right before her very last check-in, she told us that this was the most critical part of the surgery.  I started praying as I watched her leave the waiting room. When she came out, she said she stood in the doorway, and the surgeon gave her a thumbs up.  Relief washed over me. We were almost done.

The surgeon came out after it was over.  The first thing he said was, “It was complicated.”  I caught my breath and immediately asked him, “But he’s okay; right?”   He nodded. That was my first inkling that something was wrong, but the surgeon said he was okay, so I quickly pushed it out of my head.

I then went upstairs to TJ’s room and sat with him until he woke up.  The first thing he said was, “Mom, I didn’t die.” Sigh. We had gotten through it.  But almost right away we noticed he couldn’t swallow and couldn’t move his eyes.  His eyes were pointed down, and he tilted his head back to look at us. We told ourselves it was just the anesthesia, and it will go away soon.

But as the hours ticked by, it wasn’t going away.  In fact, things were getting worse. He was becoming increasingly confused.  He was hallucinating and saying crazy things. He ripped his IVs out and had to be tied down to the bed.

As the week progressed, he continued to worsen.  Even though his confusion got better, his talking became a whisper, and then he quit being able to talk altogether, and he stopped being able to write.  He couldn’t hold his head up anymore. His mouth started clamping shut, and he tried desperately to pry it apart. He started biting his tongue and lips and would squeal in pain.  He was coughing and coughing and choking, and it went on and on for hours. We were trying desperately to suction him, but because he couldn’t open his mouth, we couldn’t get the secretions out.  At one time he whispered, “This is miserable.”

TJ before and after intubation

A week after the surgery, he went into respiratory failure.  During intubation, his lungs had been over inflated, and the increased pressure blew holes into his lungs.  His entire body filled up with air. They then put chest tubes in, which are very painful, to remove the air.  They also at this time discovered blood clots in his lungs, which can be fatal.

The doctors were very confused about what was happening to him.  His MRI had a few little infarcts on it, which are areas of oxygen loss, but they said it wouldn’t be causing what was going on now.

They thought he might have an autoimmune disease, Myasthenia Gravis, that may have been triggered during the surgery.  They were testing for it, and we were anxiously awaiting the results that would shed light onto the mystery.

I spent a lot of my time walking the halls and praying.  I was terrified and physically sick from the intense fear that gripped me day and night, but I knew I had a choice to make.  I desperately wanted to cave into the fear and scream and go berserk, but I chose to have courage and walk through the fear believing that God was by my side.

Right before TJ’s surgery, I had taken a Beth Moore Bible study called Believing God.  During that study, I learned that the Christian life wasn’t just about believing IN God, but it was about believing what God says and taking God at his Word.  I was now at a crossroads. Was I going to take what I learned and apply it to my life, or was I going to remain untouched? I chose to trust Him, and He showed me He was with me every step of the way. 

TJ’s Myasthenia Gravis tests came back negative.  I was really hoping and praying we would get a diagnosis and then they could fix him.  Despair was knocking on the door, and it was a battle to fight it off. Exhausted, I laid down on TJ’s couch. I didn’t know where to go from here or how to help my son who was suffering so miserably.  And I was so scared. I drifted off to sleep. I don’t know how long I had been asleep, but I awakened to the song by Casting Crowns Praise You in This Storm going through my head.

As the thunder rolls
I barely hear You whisper through the rain
I’m with you
And as Your mercy falls
I raise my hands and praise
The God who gives and takes away

And I’ll praise you in this Storm
And I will lift my hands
That you are who you are
No matter where I am
And every tear I’ve cried
You hold in your hand
You never left my side
And though my heart is torn
I will praise you in this storm

God’s presence was so near to me at that moment, enveloping me, drawing me closer.  I was not alone.

Immediately after, the neurologist then came in and said they were now going to test for another autoimmune disease called Guillain-Barre.  At that moment hope sprung to life again within me. Not long after that, I received a text message from a friend who I hadn’t talked to in weeks.  She had heard what we were going through and sent me a YouTube video link. I clicked on it, and it was the video Praise You in this Storm by Casting Crowns.

God is so good!  I knew He was with me.  He knew how much this was hurting me, but He wanted me to praise Him despite the terrible storm I was in.  I decided that no matter what lay ahead, I wasn’t going to get angry at Him and turn my back on Him but that I was going to trust Him and remain faithful. 

“Fear not, for I am with you; be not dismayed, for I am your God.  I will strengthen you, yes, I will help you, I will uphold you with My righteous right hand.” 
Isaiah 41:10

Ball Juggling

Psalm 34:15 & 17
“The eyes of the Lord are on the righteous and His ears are attentive to their cry.  The righteous cry out and the Lord hears them; He delivers them from all their troubles.”

It was a Thursday, and TJ and I had had a busy day of therapy in the morning and school in the afternoon.  Because TJ started his senior year second semester, the school didn’t have a nurse employed for him, so they asked me to be his nurse.  I was thrilled TJ was going back to school to finish his senior year and would be around young people again, so I eagerly accepted. Even though it meant that I was extremely busy running him from one thing to the next, I didn’t mind.  It was better than him sitting alone in front of the TV all day.

After writing poems and learning about America’s government, we returned home from school, and I parked him in his favorite La-Z-Boy chair so he could play Xbox.  He loved his Xbox. He played it all the time, but with hands and arms that had a mind of their own, I don’t know that he ever really accomplished much. Most times when he was playing, I found him with his arms over his head, the controller upside down, and the character on the TV running around and around in circles.  Even so, it didn’t seem to bother him, and he still kept trying.

TJ & Aiden, 2011

After getting him settled in, it was late in the afternoon when I looked at the time.  3:30 pm. Aiden would be getting off the bus in a half an hour. Aiden is our grandson we adopted as a baby.  He calls us Nana and Papa. He was in kindergarten at the time, and it was West Des Moines’ policy that kindergartners had to be picked up at the bus stop by an adult.

After attempting to do a little housework before picking Aiden up, I heard TJ’s call button sound.  I strolled into his room to see what he needed and found that he had had an accident and was very upset.  I lifted him up, walked him to the bathroom, and began cleaning the mess and doing laundry. I was so focused on my chores that I lost track of time until I heard the sound of my phone ringing.  I halted what I was doing and looked at my phone. It was the West Des Moines School Bus. I quickly glanced at the clock and saw that it was 4:10 pm. I immediately knew why they were calling — I had forgotten to pick Aiden up from the bus.  Panic set in, and I felt my stomach getting sick.

“Hello?”  I answered.

“This is Lisa from the West Des Moines School Bus.  There was no one to pick Aiden up from the bus stop today so the driver kept him on the bus.  Are you home now?”

I could feel my stomach twisting and turning inside of me.  All I could think of was Aiden sitting on the bus, scared with tears running down his cheeks because his nana had forgotten him.

During TJ’s initial hospitalization, while TJ and I were in Rochester and Papa was working nights, Aiden was shuffled around from house to house for months.  He was too young to understand what was happening and sometimes begged his papa not to leave him.

TJ and Aiden
St. Mary’s Hospital, 2013

During that time, my hope was that after we came home, things would get better for Aiden and we would achieve some type of normalcy.  But things hadn’t gotten better. Caring for TJ still took up most of our time, and Aiden was left with the scraps.

We were failing.  We were juggling more balls than we could handle, and some balls were dropping.  I knew deep down that it wasn’t our fault, that it was out of our control and we were doing the best we could, but I still felt incredibly guilty and worried that Aiden was going to pay the price.

“Yes, I’m home.  I’m sorry. My other son is disabled, and I was in the bathroom with him and couldn’t get to the bus stop.  Is Aiden okay?”

“Yes, he’s fine.  It’s no problem. The driver will keep him until the end of the route and then will drop him back off at his stop.  I will let you know when he is on his way back.”

“Thank you so much.  I will be there,” I said and hung up the phone.

I quickly went back to cleaning TJ up and began a conversation with the Lord expressing my frustration with our current situation.

“I don’t understand, Lord.  Why would You give us this little boy when You knew TJ was going to get sick and we wouldn’t be able to handle all of this?  This isn’t fair to Aiden. Please do something.”

But nothing changed.  We were still juggling too many balls, and Aiden was still getting the scraps, but we kept pressing on, trusting in the Lord and His promises, and doing the best we could. 

One day several months later, I noticed that Aiden was watching something on YouTube.  Becoming concerned about what was entering his little mind, I asked him what he was watching.

“Bible stories,” he answered.

After studying what was on the screen, I noticed they weren’t just children’s Bible stories like Veggie Tales or cartoons.  They were adult Bible stories, like the Ten Commandments.

“Hmmmmmm…..that’s a bit unusual,” I thought.  “What kid wants to watch adult Bible stories?”

I was intrigued and somewhat skeptical, so I sat down with him to find out more.

During our conversation, I learned that he had been searching YouTube for Bible stories and had watched almost every one of them and was trying to find more.  He clearly was fascinated by them. I was astounded and could hardly believe it.  I thought back to when I was a kid and remembered how much I disliked those movies.  I thought those movies were boring and that the people on them were strange and dressed and talked funny.

After telling a friend a few months later about his incredible love of Bible stories, she commended me on our great parenting, and I burst out laughing.  I knew it had nothing to do with us. We had been so focused on taking care of TJ and searching for answers that would improve his life that we hadn’t been spending quality time with Aiden and teaching him God’s Word like we should have been.  The honest truth was we were failing him. But God wasn’t. God was instilling a love for His Word in Aiden’s little heart, and without us even knowing, He was picking up the balls we were dropping.

Aiden & Mrs. Stuart, 2019

Aiden is now 9 years old and entering fourth grade, and he gets more individual attention from Nana and Papa now than he sometimes wants.  He still loves Bible stories, and one day after his amazing NBA career is over, he wants to be a pastor. This past year we enrolled him in a Christian school after TJ died, and at conferences this year, one of the first things out of Mrs. Stuart’s mouth was, “He is enamored with Bible stories!”  At the time she knew nothing about his past or how much sharing that tidbit of information would encourage me. What a blessing that was to me.

What about you?  Do you sometimes feel like you have too many balls in the air?  Do you feel that you just can’t keep it all together and do everything well?  During my time of ball juggling, I learned that God hears us and is always with us.  He strengthens us and upholds us (Isaiah 41:10). He sets our feet on solid ground and steadies us as we walk along (Psalm 40:2).  He makes a way when there seems to be no way. Although we may fail, He never does.

Whatever difficulty you are going through, you are never safer than when your trust is in the Lord.  He loves you. He will hear you and will deliver you from all your troubles.

The Woman with the Box

Philippians 4:19
“And my God will meet all your needs according to His glorious riches in Christ Jesus.”

It was a hot summer morning in Rochester, Minnesota, and a wave of heat hit me as I exited the doors of the Ronald McDonald House.  Summers here were milder and shorter than in Iowa, but needless to say, we still got the taste of a good heat wave for a couple of weeks in July.  The hospital was always so cold, so I didn’t mind a little heat. After meandering through the parking lot to the sidewalk just beyond, with my head down, I started out on my morning walk to St. Mary’s Hospital.  I began thinking about the coffee I would soon be purchasing at the Caribou across the street. Pleasing thoughts of mochas and lattes danced in my head, and I quickened my pace in eager anticipation of drinking one of them.

While walking, I looked up to see how far away from the hospital I was when I noticed a rather peculiar sight.  There was a young woman a ways up ahead of me carrying a large box. Even though I was still quite a distance from her, I could see she was really struggling with it.  It held my attention for a while because I wondered why she would be taking such a large box to the hospital. Unable to come up with a reasonable explanation, I went back to walking with my head down.  The next time I looked up, I was surprised to see that she hadn’t arrived at the hospital doors yet. She apparently had given up on carrying the box and was now sitting on it beside the sidewalk.

“Hmmmmmmm,” I thought.  “That’s not something you see every day.”

As I approached her, I soon realized she had stopped and was sitting on it because she was bawling her eyes out.  Concerned, I stopped and asked, “Are you okay? Can I help you carry the box?”

She nodded.  Together we picked the box up and started out again for the hospital, and she began opening up about what was troubling her.  “I’m from North Dakota and my baby is having heart surgery. I have three other kids at home with my husband, and my husband is angry at me, so he only sent me half the money he was supposed to.  I need to ship this box, and I don’t have enough money to ship it.”

My heart sank.  This was such a hard place.  Everywhere I looked there were sick children and grief-stricken parents.  For most families financial difficulties loomed, and fear of the unknown outcome of their sick child hung over their heads like a black cloud.  It was no wonder she and her husband were arguing. One very sick child was a state away with one parent, and three other young children were at home with the other.  They had to be stressed to the max. As we walked, I listened and offered what encouragement I could.

After arriving at the hospital, we came to my elevators just inside the Francis Building.  “These are my elevators,” I told her. “How much farther do you still need to go?”

“Not much farther.  I can handle the rest by myself.  Thank you for helping me,” she said.

I then stopped, set the box down, pulled out my wallet, and handed her $60.

“Oh, I can’t accept this,”  she said.

“No, please take it,” I said.  “It’s not my money anyway. People gave it to me.”

While TJ and I were at Mayo, I was amazed at the amount of money I received in the mail.  I couldn’t believe how kind people were, and some of them were people I didn’t even know. A few weeks after TJ’s surgery, when we realized his medical problems were not going to be over any time soon, I quit my job to stay with him.  Since we lost an entire income, my goal was to use the money I received in the mail to live on so I would not have to dip into our already tight finances back home. Up to this point in our stay in Rochester, I always had everything I needed.

So after again encouraging the woman to take the money, she finally relented and accepted it, and we went our separate ways.  I pushed the up arrow for the elevator, and when the elevator doors opened, I was happy to see there was no one in there and I would be riding the elevator alone because I had some praying to do.  As I rode to TJ’s floor, I prayed, “Lord, I gave that woman almost everything I have, but I know it’s what You wanted me to do. I’m low on money now, Lord, so You are going to have to help me.”

I then walked off the elevator and pushed my concerns about money aside because I trusted that God would take care of me.  I really didn’t have time to worry about money anyway. I had to keep focused because there were more important things going on.  TJ was having trouble with excruciating headaches as they weaned him off powerful medications.

Over the next few days, I tightened the purse strings.  There were no more mochas or lattes from Caribou, and I ate simple meals that were prepared in the kitchenette in my room at the Ronald McDonald House.  About three days after the box incident, during a short lunch break, I walked to the Ronald McDonald House to check the mail. I was excited to see that in my mail cubby was a card from a good friend named Carole.  I always loved getting mail from home. After opening the envelope and reading the front of the card, I noticed there was a folded-up check inside. I unfolded the check, and to my surprise, saw that it was for $60, the exact same amount I gave the woman with the box.  God had met the needs of the woman carrying the box as well as my own needs.

I learned a powerful lesson that week when I was in Rochester.  I learned that if I hold on tight to everything I have because I’m afraid of where more will come from, then I really am not trusting that God will provide for my needs.  But if I take a step of faith and believe that God will meet all my needs like He says He will, I learned that I will hold on to what I have loosely and will allow myself to be used as a conduit so that God can use me to get money to others who are in need as well.  The Lord says in Matthew 6 that just as He feeds the birds of the air and clothes the grass of the field, He will also feed and clothe His children. All He requires of us is to trust Him and take Him at His Word. And if we do that, then we will be enormously blessed by watching how the great Hand of God moves into action and provides for His people.

He truly is a God who will meet all of our needs according to his glorious riches in Christ Jesus.

All Things New

Revelation 21:5 “Behold I am making all things new.”

I stood at the rear sliding glass door of my house and gazed longingly at my rain-soaked backyard garden.  It had been raining cats and dogs for days, and it was looking like this day would be no different. Annuals were desperate for planting, weeds demanded pulling, and tall perennials were crying out for staking, but it was too wet to do any of that today.  A frustrated sigh escaped my lips, and I quietly murmured, “I guess it will just have to wait.”

I then turned my attention to the cherub wrapped in his wings and perched on a bench at the end of my garden.  He sat alone and looked like a child praying with head bowed. He was surrounded by an array of flowers that complimented his light gray cement color.  My husband bought him for my birthday a couple of summers ago to replace the garden angel TJ destroyed with his paintballs. I enjoyed gazing at this new cherub amidst all of the colorful garden splendor.  He was way better made and much better quality than the angel he replaced.

Broken garden angel

Several years ago, my then 15-year-old son TJ decided it would be funny to shoot up my backyard with paintballs.  I arrived home from work one day and was surprised to find my tree trunks pink, my shed orange, and my garden angel yellow with a hole in her right shoulder and feathers from her delicate wings broken or missing.  I didn’t find his shenanigans to be as funny as he thought they were, but I have to admit that underneath my outward irritation was a smile I was trying to disguise. Even though he accidentally broke my garden angel I was quite fond of, I did secretly enjoy the delight in his eyes and the way his shoulders bounced up and down in rhythm with the chuckle he couldn’t hold in from being able to pull off a mischievousness that irritated his mother.

The broken, pockmarked angel sat in my garden for a couple of years.  Despite my affection for her, I planned on replacing her but had never gotten around to it because in my fondness for her, I had almost convinced myself that from a distance you could hardly tell she was broken.

And then TJ suffered his brain injury.

“How could I replace her now?” I thought.  Her presence in the garden was tied to a memory of TJ in his healthy days.  Throwing away her broken figure would somehow feel the same as throwing away good memories of when he was young and full of life.  It would feel as if he was being erased. She then sat broken in my backyard for several more years.

But after time I began to realize that the good memories she conjured up also brought along painful memories and reminded me of how things once had been and that they would never be that way again.  For many years these two polar opposite feelings twisted and turned inside of me like oil and water. They occupied the same space but were distinctly separate and never became one. Until one day when I came to the firm decision that it was time to throw her away.  Her brokenness was too painful for me to endure anymore, and it was time to replace her with something new. I then asked my husband for a new garden statue.

New garden cherub

Looking at my new cherub that rainy morning reminded me of the painful fact that everything in this world, even things we take great care of, break and need replaced. Everything eventually loses its shiny newness, wears out, and gets old. Buildings become old and get restored; bosses want fresh ideas and substitute workers; teams want winning seasons and exchange athletes; and garden angels get shot up by paintballs and need replaced.  We long for a place where things will always remain new, life won’t get boring, bodies won’t grow weak and old, and favorite statues remain in our gardens.

In Revelation 21:5 God announced directly from his throne, “Behold I am making all things new.”  God is in the act right now of making all things new, and He promises His people when He finishes His work, not only will all things have been made new, but they will STAY new.  They will never break, wear out, or need replaced. We will have new, strong bodies that will never grow old, new discoveries everyday to interest ourselves, and an eternity to spend with our loved ones.

So that begs me to ask the question, dear one…..will YOU be made new?  Will you experience the newness that heaven offers? Only those who choose to put their faith in Christ will encounter the newness that is reserved only for heaven.

Answer His call and accept Christ as your Savior today and look forward to an eternity of all things made new.

Morning Cup of Sunshine

I awakened this morning while it was still dark outside and the house was quiet. I have always been an early riser. As I sauntered down the stairs, the old, well-known proverb “Early to bed and early to rise, makes a man healthy, wealthy and wise,” my son-in-law, Ben, quoted to me while we were on family vacation in Utah last summer floated through my mind. Ben had noticed my sleeping habits while we were on vacation and was thrilled to see that they resulted in a beautiful breakfast buffet awaiting him each morning.

Morning is the time when my thinking is the clearest and I can accomplish the most.  I look forward to the quiet moments in the morning that I get to spend with God praying and studying. It’s the time of day when I feel closest to Him.

This morning, as per my usual routine, I headed straight for the kitchen to make the coffee. I pulled the Folgers Breakfast Blend out of the coffee cabinet, grabbed the Coffee Mate Snickers flavor from the refrigerator, and began filling the coffee pot with water. I love my morning coffee. It is oftentimes the first thing on my mind when I awaken in the morning and the last thing on my mind when I fall asleep at night.

As I sat at my kitchen table and drank my morning cup of sunshine, I began googling “Bible studies for special needs parents” in an attempt to find material we could study for the Moms’ Group that I lead. I stopped on one Bible study in particular titled “Held: Learning to Live in God’s Grip.” As I was reading, an unexpected wave of sadness swept over me and the tears started to fall that even my morning cup of sunshine couldn’t chase away. I had been slapped in the face with the reminder that I was no longer the mom of a child with special needs.

In the midst of my sorrow, I remembered the words spoken from one of the moms at a previous meeting: “This is temporary! This is temporary!” she exclaimed. A sentence with just three words, but for those of us who are suffering, what a profound sentence it is. I then embarked on a quest that morning to find Bible verses to comfort and remind me about the short-term nature of life’s pain and suffering. Below are the verses I found:

2 Corinthians 4:18
So we fix our eyes not on what is seen, but on what is unseen, since what is seen is temporary, but what is unseen is eternal.

1 Peter 5:10
And after you have suffered a little while, the God of all grace, who has called you to his eternal glory in Christ, will himself restore, confirm, strengthen, and establish you.

Psalm 71:20
You who have made me see many troubles and calamities will revive me again; from the depths of the earth you will bring me up again.

Joel 2:25
I will restore to you the years that the swarming locust has eaten, the hopper, the destroyer, and the cutter, my great army, which I sent among you.

Revelation 21:1-5
Then I saw a new heaven and a new earth, for the first heaven and the first earth had passed away, and the sea was no more. And I saw the holy city, new Jerusalem, coming down out of heaven from God, prepared as a bride adorned for her husband. And I heard a loud voice from the throne saying, “Behold, the dwelling place of God is with man. He will dwell with them, and they will be his people, and God himself will be with them as their God. He will wipe away every tear from their eyes, and death shall be no more, neither shall there be mourning, nor crying, nor pain anymore, for the former things have passed away.” And he who was seated on the throne said, “Behold, I am making all things new.” Also he said, “Write this down, for these words are trustworthy and true.”

After being encouraged by God’s promises, with materials spread across the table and my coffee cup in hand, I pondered life for awhile and thought how every single one of us on this earth suffers. Of course we hate it and try our best to avoid it, but, sadly, no one escapes it. People we love become sick, marriages fall apart, kids rebel and make bad choices, spouses lose their job or get hurt and become disabled. The list goes on and on.

“For the Christian living in this fallen world, what exactly is the purpose of suffering?” I asked myself.  “There has to be a reason God allows us to suffer.” After researching a little more, I came up with two purposes for suffering:  To bring glory to God and for our good.

We have a choice of how we respond to suffering.  If we choose to suffer well, we display to an unbelieving world that Christ is more valuable and magnificent than any sorrow or pain we might be experiencing.  Suffering well creates opportunities to point others to Christ.

Suffering also loosens our tight grip on this world that always falls short of meeting our expectations and turns our gaze toward heaven with the hope of all things made new. It motivates us to work for a cause greater than ourselves and increases our capacity of compassion for others. Suffering causes us to put our hope in Christ rather than in the temporal things of this life for which God then receives the glory.

We don’t have to suffer alone though. God comforts us during times of suffering. His presence alone gives us strength and rest to endure our trials.  Psalm 34:18 says, “The Lord is close to the brokenhearted and saves those who are crushed in spirit.”  Psalm 23:4, “Even though I walk through the valley of the shadow of death, I will fear no evil, for you are with me; your rod and your staff, they comfort me.” Exodus 33:14, “And he said, ‘My presence will go with you, and I will give you rest.’” God’s Word is true and infallible, and if the Lord says He will be close to us during our times of suffering, then He will.  If the Almighty says He is with us while we walk through the valley, then He is, and if the Great I Am says His presence will go with us, then it will.

As we go about our days, may we always remember the wise words from the mom in Moms’ Group and remind ourselves often that suffering is temporary.  We have been given hope from God’s Word that one day we will be restored, confirmed, strengthened, and established and He will wipe away every tear from our eyes and death shall be no more.

We have an eternity of joy and contentment to look forward to, so go now, dear one, and suffer well.

I Can’t Do Any More

Isaiah 30:21 “Whether you turn to the right or to the left, your ears will hear a voice behind you, saying, ‘This is the way; walk in it.’”

My son TJ was discharged from Mayo Clinic the first time on September 3, 2013, after a four-month hospitalization.  Despite his very complicated medical condition, our plan was to take care of him at home. He was 17 years old and still a child.  He had been through a harrowing experience, and I wanted him to have the comfort that only being at home could provide. I couldn’t bear the thought of placing him into a care facility after all he had been through.

During our stay at Mayo, the medical staff was very focused on training parents on how to take care of their children with medical problems.  As I stated in earlier posts, I despised learning and didn’t appreciate being forced by the medical staff. My hope was that if I held off long enough, he would get better, and I wouldn’t even need to learn his healthcare routine.  But after being told that he wasn’t getting out of PICU until I learned, I begrudgingly started working on checking off the boxes of my to-do list which included daunting tasks such as changing a trach three times and CPR training. After completing all the tasks, I decided I had had enough and I wasn’t going to do any more of it until we got home.

The next morning when I walked into TJ’s room, after updating me on TJ’s night, the nurse told me that I needed to do his morning site cares.  Site cares involved cleaning around his trach and G-tube with Q-tips and changing the dressing. I had already checked my three boxes off for having done site cares, and I felt that I knew how to do it good enough.  Upon hearing her instruction, I immediately started bawling and exclaimed, “I’ve done my three times already and I can’t do any more! I’m tired! There are other things going on in my life right now that you don’t know about!”  She said, “Well, you still need to be doing them. You can’t just stop. You’ve got to keep practicing.” I turned my head away and looked out the window, and the room got very quiet after that.

What were those things that were going on?  Well, I was grief stricken and heartbroken, and my body was beyond exhaustion.  I wasn’t getting much sleep. I tossed and turned every night wondering if my son was going to get better.  I wondered what kind of life he was going to have and how we were going to live like this. I went over and over in my mind his decline that first week trying to figure out what had gone wrong.  Even doing
5 minutes of site cares seemed to be too overwhelming.

The nurse began to do his site cares then and gave me a break, but my relationship with her was never the same after that.  She was quiet around me and didn’t make eye contact with me anymore which bothered me. Looking back, if I could go back to that day, knowing what I know now but also remembering how I felt then, I still don’t know I could have reacted any other way.  However, what I would tell that nurse now is, “Thank you for pushing me. Thank you for putting up with me. Thank you for making me learn how to take care of my son. Don’t ever stop pushing parents when they protest and give you a hard time. What you are doing is so important.”  Once we got TJ home, I began to realize just how vital those skills were and how the medical staff at Mayo knew that.

Several months later, my son was admitted into a brain injury rehab facility.  Most days I stayed with him all day and went home at night to sleep. Early in his stay there, one afternoon I heard the all too familiar sound of his trach gurgling which meant it needed suctioned.  While the nurse was in the room, not even thinking twice about it, I jumped up and began suctioning. I looked up, and the nurse was standing there stunned with eyes wide open. I asked, “What’s wrong?  Did I do something wrong?” and she said, “I have never had a family do that before.” That was when I first began to understand what a rarity our knowledge was.

TJ also had a G-tube.  Once in awhile it would get clogged, and I would be unable to get it cleared.  We would then load up in the van, go to the hospital to Interventional Radiology, and sit there for hours until they removed it, put a new one in, and then x-rayed it to make sure it was in the right place.  I hated going down there and sitting all day. It was uncomfortable and hard for TJ to sit in his wheelchair that long, so I decided I would just have extras available at home and I would do it myself. I thought if I can change a trach, then I certainly can change a G-tube.  The only thing I couldn’t do was x-ray it, but I decided we would be okay, although I figured a doctor would probably disagree with that.

A few months later TJ had an appointment with the GI doctor.  When he asked me how often the G-tube gets changed and who changes it, I was afraid to tell him that I was the one who had been changing it and wasn’t getting it x-rayed.  I reluctantly confessed to him that it was me and prepared myself for the scolding I was about to receive. He then said, “You’re doing it? That’s wonderful! I never have patient’s families do that!  You’re doing a great job!” A feeling of relief washed over me, and I once again realized how unusual our medical knowledge was.

Another time toward the end of TJ’s life when he was in the hospital with pneumonia, a pulmonologist came in to talk to me.  As we went over TJ’s symptoms and treatment, the doctor commended me on the great care we had been giving him. He said, “He hasn’t been in the hospital for two years which means you are doing a very good job taking care of his lungs.”  Upon hearing this, I was beaming inside and knew it was because of the training I had received at Mayo.

TJ and I at his 20th birthday party at Principal Park

Many times since that initial brain injury in 2013, I have thanked the Lord for his guidance during our son’s illness.  Even though this terrible disaster had occurred, the Lord was with us every step of the way, taking care of us, and pointing us in the direction we needed to go.  Life flighting TJ to Mayo was the best decision we ever made in those early days after tragedy struck, and I am thankful that the Lord put people around us who encouraged us to go there.  I am thankful that God had provided Travis with a job that had impressive health insurance that allowed us to life flight TJ to Mayo in the first place. I am also thankful for the medical staff in Rochester who greatly care about the people they treat and are in the trenches battling with you at the time when you need them the most.

There are times in our lives when God leads us into things that we don’t want to do.  I didn’t want to learn my son’s medical care, but I’m so glad I did. My life was richer because of it, and I was able to spend three years with him at home.  Because of the battle we were in together, the bond between TJ and I grew strong, and it was hard for us to be separated from one another. I hugged and held hands with my 21-year-old son every single day.  There are not many mothers who get to do that. I was very blessed, and I am looking forward to the day when we are together again.