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.

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

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.