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

A Birthday Celebration Disaster

Deuteronomy 34:4
“Then the LORD said to him, ‘This is the land I promised on oath to Abraham, Isaac, and Jacob when I said, ‘I will give it to your descendants.’  I have let you see it with your eyes, but you will not cross over into it.’”

As TJ’s second birthday without him is fast approaching, I’ve been reminiscing lately about how we spent his first birthday without him.  Last year in July, we went on our first ever family vacation which included nana and papa, daughters, sons-in-law, granddaughters, and grandsons.  When all of us are together, we number 21 in total.

We found  a very large house in Salt Lake City, Utah to accommodate us.  It was nestled into the side of a mountain and had five bedrooms, one of which was a bunk bed room for all of the little gremlins; a media room with a big screen for watching movies; and a giant game room which was any child’s–or husband’s–dream.

Salt Lake City, Utah

We chose the beautiful Salt Lake City for our vacation destination last year because it was a good halfway point with our daughter Whitney who lives in Washington state.  I had never been to Salt Lake City before and was taken aback by the beauty of it. The city is located at the base of the Wasatch Mountains on the east with the Great Salt Lake across the valley to the west.  I enjoyed my morning walks along the edge of the mountain looking out across the city below to the view of the Great Salt Lake in the distance. It was breathtaking.

Our fourth day there was TJ’s birthday.  After shedding a few tears in the morning and doing crafts and baking cookies with the grand kids all afternoon, the plan that evening was to release sky lanterns in memory of TJ.  I had been imagining this event in my mind for months. I pictured releasing them by a lake with beautiful mountain scenery surrounding it. All of us would be standing together with our smiling faces turned upward and maybe some tears streaming down our cheeks as the sky lanterns all floated away together.   The kids would be cheering with joy on their faces as they watched the lanterns light up the sky. Everybody would be happy and thinking about TJ, and I imagined TJ looking down from heaven with a big, peaceful smile on his face. 

But that is totally not what happened.

Early in the day, my husband drove around the city scouting out the landscape looking for the perfect place to release the lanterns.  That evening as our caravan of cars arrived at the location he had chosen, I gave him a thumbs up and complimented his choice. It was a beautiful location.  It was a flat, park-like setting with a pond of water nearby with vegetation growing around it, and mountains were standing tall in the distance. It looked perfect…..but looks can be deceiving.

It wasn’t until we got out of our cars that we began to realize the water close by was stagnant and the mosquitoes were insane–like nothing we had ever experienced before.  Almost immediately we were attacked by a swarm of mosquitoes. As we were flailing our arms to defend ourselves, most of the younger kids began wailing at the top of their lungs and frantically scratching their arms and legs.  We hurriedly scattered and turned our attention toward the children. In the background, while we were running, I could hear our son-in-law Matt yelling, “Why was this place chosen?!”

After tending to the screaming children, still undeterred and doing our best to ignore the bites, we proceeded with TJ’s birthday celebration.  We started lighting the lanterns, but almost immediately we began experiencing more problems. The lanterns weren’t easy to light and were catching on fire. Pockets of fire were scattered around the park.  Our son-in-law Ben, concerned about the police being called, was running around like a mad man putting the fires out with small drinking bottles of water. The lanterns that didn’t catch on fire wouldn’t rise.  Our daughters were running after their lanterns that were hovering at eye level blowing and flapping their arms wildly in an attempt to get them to fly. After the last lantern was lit and burst into flames, we counted them up, and only 3 of the 26 lanterns actually flew.  The rest were burning in a heap on the ground. We then cleaned up the mess, put all the fires out, hurriedly escaped to our cars, comforted the bawling children, and drove away as fast as we could, scratching our bites all the way home.

My deceased son’s first birthday celebration without him was an utter disaster.

To onlookers, this couldn’t have looked like a family who was honoring their son who had recently passed away.  This looked like pandemonium and irresponsibility for lighting lanterns in the hot, dry climate of Salt Lake City.  Coming from the green, rolling hills of humid Iowa where releasing sky lanterns is legal, it never occurred to any of us until the fires began that lighting lanterns in a hot, dry climate wasn’t a real smart idea…..or even legal.

In my younger years, I would have been devastated that my son’s first birthday celebration after his death was a complete catastrophe, but now in my older years, I’ve learned a few things.  I’ve learned that sometimes when things don’t go as planned, it still can be beautiful. The morning after our disastrous evening, we sure enjoyed sitting around recounting the night and laughing hysterically at our foolishness.  In the wake of the devastating tragedy of losing TJ that cut each one of us to the core, it was a much needed family bonding moment. We came to the conclusion that if TJ could have seen it, he would be laughing as well at his crazy family.  In fact, he would have enjoyed seeing our mosquito-infested, tumultuous evening way more than the tear-filled, sappy celebration I had envisioned in my mind.

What about you?  Have you had times when things didn’t turn out as you had envisioned?  Have some of your dreams ended in disaster and you just weren’t sure how to pick up the broken pieces and carry on?

During my Bible study time the day prior to the birthday celebration, I read about Moses.  Moses led God’s people out of slavery in Egypt. Numbers 20 says that in the first month after leaving Egypt, the community arrived at the Desert of Zin.  There was no water for the community, and the people began to quarrel with Moses. Moses and Aaron then went to the entrance to the Tent of Meeting and fell face down, and the glory of the Lord appeared to them.  The Lord told Moses to take the rod and speak to the rock and water would pour out. But Moses instead struck the rock twice with the rod and then spoke harshly to the community. Despite Moses’s disobedience and because the people needed water, the Lord still provided abundantly for the people and water gushed out of the rock, and the community and their livestock drank, but the Lord told Moses that because he didn’t trust Him enough, he would not bring the community into the land the Lord would give them.

Because of God’s Holiness, His correction of Moses was hard…and deserved.  Moses was a leader and leaders are judged by a higher standard. All of his life, even since he was an infant, Moses was being prepared to deliver God’s people from Egypt and bring them into the Promised Land.  I wonder as Moses grew, when he heard the miraculous story about how Pharaoh’s daughter plucked him out of the Nile River while the other Hebrew babies were murdered, if he knew his life had been saved for a special purpose?  I wonder as Moses played and ran through the palaces of Egypt as a child, if he could feel God’s calling on his life and knew that there was something God had planned for him to do? I wonder while Moses was in Midian, if he came to realize that he was there so God could continue to mature him before He sent him out before Pharaoh?  I wonder how many times while bringing the people out of Egypt Moses had dreamed of the day when he and the whole community would set foot on the soil of the Promised Land? But now because of his own disobedience, Moses would not lead the people into the Promised Land and another person would finish the job. How unbelievably disappointed Moses must have felt.

After leaving Egypt, because of disobedience, the community wandered in the desert for 40 years, and then the time finally came to enter the Promised Land.  The baton had been passed from Moses to Joshua, and Joshua would lead the community into the Promised Land. In the 34th chapter of Deuteronomy, the Lord took Moses high up on a mountain and showed him the whole land that He had promised to Abraham, Isaac, and Jacob.  Then Moses died and the Lord buried him. A tender, loving, gracious Father allowed Moses to see the Promised Land with his own two eyes and then privately buried His faithful servant Himself in an unmarked grave.

Maybe God said no to your prayers and hopes and dreams, and life hasn’t turned out for you like you had planned.  Moses’s hopes and dreams didn’t turn out like he had planned either…..but here’s the beautiful part about Moses’s story.  A short time after Moses was forbidden from entering the Promised Land, God took him home to an eternal life with Him forever.  The loss of not being able to enter the Promised Land was only momentary, temporary, and for those of us who are in Christ, the same is true for us.  God will also take us home to an eternal life with Him forever as well, and these disappointments and losses that we experienced here on this earth will become a faded memory.

This year for TJ’s 23rd birthday celebration, we are headed out on our second annual family vacation, but this time to Breckenridge, Colorado.  We are minus two daughters and their families due to scheduling conflicts and distance. We are foregoing the sky lanterns this year–surprise, surprise–and are in the process of brainstorming a new way to memorialize TJ’s birthday.  You will hear all about it in an upcoming blog post in a few weeks.

What We Believe Determines How We Will Live

I had been a Christian for a long time, but nothing made me doubt God’s word more than burying my son.  Once your child is gone, every inch of your body yearns to be reunited with that child again, and it is all you think about.  Thoughts began to float through my head like, “What if he wasn’t saved and I never see him again?” “What if God really isn’t real and when we die we just die and there is no heaven or hell and I never see my son again?”  Deep in my inner being, I know TJ was saved, and I know that God is real and none of these thoughts are true. I have seen countless evidences of Him throughout my lifetime. He’s laughed with me through the good times, held me in His arms through the hard times, and carried me through the really hard times.  “Why am I struggling so much with this?” I thought to myself. I began praying for God’s help to conquer these relentless thoughts that were causing me to doubt.

At the beginning of this year, I was asked to be in a Bible study with some friends.  It was a read-through-the-Bible-in-a-year study, and I eagerly said yes. We started reading at the very beginning in Genesis.  Shortly thereafter, we came to the story of Joseph, my favorite story in the Bible.

Jacob was Joseph’s father and he had 12 sons.  Joseph was the favorite, and his other brothers were very jealous of him.  One day when Joseph was 17 years old, the brothers decided they had had enough of this spoiled kid, and they plotted to kill him.  Reuben, one of the older brothers, did not want the boy killed and persuaded the other brothers to throw him into a pit. Reuben’s plans were to rescue him from them and take the boy back to their father, but shortly thereafter, a caravan of Ishmaelites was traveling by, and the brothers sold Joseph to them.  

Genesis 37:31-35

“Then they got Joseph’s robe, slaughtered a goat and dipped the robe in the blood.  They took the ornate robe back to their father and said, ‘We found this. Examine it to see whether it is your son’s robe.’

He recognized it and said, ‘It is my son’s robe!  Some ferocious animal has devoured him. Joseph has surely been torn to pieces.’

Then Jacob tore his clothes, put on sackcloth and mourned for his son many days.  All his sons and daughters came to comfort him, but he refused to be comforted. ‘No,’ he said, ‘I will continue to mourn until I join my son in the grave.’  So his father wept for him.”

Meanwhile, Joseph spent the next 13 years as a slave and then as a prisoner, but all the while the Lord was with him and showed him kindness and granted him favor.  After many twists and turns in the story, Joseph was eventually miraculously brought up out of prison by Pharoah and put in charge of the whole land of Egypt. Through another series of events, Joseph and his brothers were eventually reunited and Joseph extended forgiveness to them.  And then the great reunion between father and son took place.

In years past I have always been astounded by the timing of God in this story, by the patience of Joseph and his trust in God through his suffering, and by his amazing forgiveness toward his brothers.  But as I was reading the story this time, I had a thought that I had never had before, “I wonder if Jacob regretted being sad all those years he believed Joseph to be dead? I wonder if he had regrets of not enjoying his life more and not enjoying his other children and grandchildren because of his all-consuming longing to be reunited with Joseph?”  Joseph had been alive the whole time, but it didn’t matter what the truth was. What mattered was what Jacob believed.

I pondered this more, and I then asked myself, “If I believe that my son is dead and in the grave and I will never see him again, then how will I live?”  After thinking about this for awhile, I decided that my answer would be: I will waste my life. I won’t be able to get off the couch most days, and I won’t be effective in winning the hearts of man toward God.  I won’t enjoy my life or the family or friends God has blessed me with, and I will probably one day have many regrets.

I then asked myself, “But if I believe that my son is alive with Christ in heaven like God’s Word says he is and that I will see him again one day, then how will I live?”  My answer: I will continue the work that God has given me to do, knowing that I will receive eternal rewards for my perseverance through suffering. I will have joy and fullness in Christ despite my suffering, and I will enjoy all of the many blessings He has given me on this earth as I eagerly look forward to heaven.

In what area of your life are you having a hard time believing God’s Word?  What we believe determines how we will live.

Hebrews 11:11 “Now faith is confidence in what we hope for and assurance about what we do not see.”