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 called: The Plans I Have For You; The Story of TJ Denham
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.
The PICU at Mayo Clinic is in the shape of a horseshoe with the PICU rooms occupying the outside of the curve. There is a walkway connecting all of the rooms that curves from one end of the horseshoe to the other, and in the middle of the empty space of the horseshoe are desks, computers, and medical equipment. The nurses told me they put the sickest kids 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, and I so wanted to talk to her. But not wanting 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 went to rehab at the same time, and then the boys were finally well enough to meet. Tom and Janet were now just down the hall from us, 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. But because TJ had eye deficits and had trouble judging distance, they oftentimes missed each other’s hands. They were quite entertaining to watch.
These two special boys had both fought many battles to recover their health, and now they were both doing well. They both 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, if he looked to the right, 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 again.
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 laid on the floor of our family room and sobbed. 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, last year Janet and I started a new tradition of meeting once a year in the fall for a weekend, somewhere halfway between our homes, to spend time together and catch up. Just like old times, we spent the weekend last year laughing and crying and talking about our sons and the memories they left, and now that TJ and Tom are together in heaven, we wondered if they sit and 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
During TJ’s first hospitalization at Mayo, his diagnosis was unknown. Doctors felt he became low on oxygen during his heart surgery and had a hypoxic brain injury or a brain stem stroke, but diagnostic studies did not match his symptoms which left everyone puzzled. The unknown of TJ’s condition left Travis and I confused and struggling to find answers. 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.
I had seen TJ walking and talking in Des Moines for a week after his heart surgery, and I just didn’t believe he was as bad as the doctors 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, but after just a few days there, his health declined from lung and intestinal infections, and he 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 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. He then picked up the marker, and in its place 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?!”
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.
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 improving 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, and his therapist was somewhat concerned but finally gave in and said she thought he would eat again. 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, and we were excited about the future.
On September 3, 2013, 4-½ 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 and worse. One person couldn’t walk alone with him anymore.
After another 2½-week hospitalization in Des Moines for an intestinal infection, his twisting became so severe that his shoulder was dislocating, his wrist was dislocating, and he was arching his back so bad that it was cutting off his airway. The twisting lasted all day, and the only relief he received 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, and they were unable to explain why this was happening.
About a year later, TJ finally came home to live, but he never recovered back to where he was when he left rehab the first time. 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, and 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, but there were also long stretches of time when I couldn’t feel the Lord’s presence, when I was confused and felt all alone. So what do we do in those times when we can’t feel God there?
We trust and believe God’s Word.
Because God says over and over again in the scriptures that He loves us and is with us, 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 felt God’s presence and always had 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, and 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
“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.
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.
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.
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.
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
TJ spent the summer of 2012 in Dallas, Texas with his oldest sister Ashley working at Trophy Club Country Club, which his brother-in-law Matt managed, as a cart attendant on the golf course. We were excited that he had the opportunity to spend time with Ashley and her family, which included an adorable, little 2-year-old nephew named Dylan. TJ and Dylan became very close during TJ’s time in Dallas. They bowled, went to Rangers baseball games, and ate at fun restaurants, but their favorite activity together was swimming. Like any 2-year-old, Dylan loved to jump in the pool and have Uncle TJ catch him over and over again, and by the end of the summer, Dylan grew brave enough to jump in, be caught, and then promptly sink to the bottom of the pool with Uncle TJ only to shoot back up again. Dylan loved his uncle TJ and Uncle TJ loved Dylan.
While TJ was in Texas, Travis and I planned to surprise him with a newly remodeled bedroom in the basement upon his return. He had never really had a nice bedroom before, so we were very excited about the opportunity to surprise him. Travis had worked in construction most of his life and could do almost anything, so he spent the entire summer working on it himself to save money.
The room was a large room and was big enough to fit a dresser, full-sized bed, large TV and entertainment center for storing TJ’s Xbox equipment, and his drum set. Travis installed beautiful, dark laminate floors which would make cleanup of TJ’s food and drink messes easy since TJ was a slob. In one corner of the room was a very large closet with a hanging bar and rows of shelves for storing his paintball equipment, and in the other corner on the same wall was a small bathroom with a sink, toilet, and a corner shower. Even though it was small, it was his, and he had everything he needed. I decorated the room with a poster of a Navy Seals Sniper on the wall, a black manly comforter on the bed and black area rug under the drum set, and brown accessories in the bathroom. And the temperature in the basement was just the way he liked it, very cold. It was the perfect space for a teenage boy.
When TJ arrived home, I could barely hold my excitement in. All three of us sauntered down the stairs to the bedroom together to reveal the surprise. When he walked through the bedroom door, his eyes lit up. Of course, being the teenage boy that he was, he didn’t show as much emotion as I hoped for, but I still think he was pleased. We told him we planned on getting him a mini fridge that he could keep water and Gatorade in for him and his friends, and like any guy would be, he was more excited about the mini fridge than the comforter, pictures, and shower curtain color.
Fall and winter came and went and still no mini fridge. When TJ asked about it again, we told him we were sorry, and we reassured him we would definitely get him one soon. In the spring of 2013, TJ was diagnosed with a heart defect requiring surgery, and the mini fridge was then the last thing on anyone’s mind. After a bad surgical outcome which resulted in 2-½ weeks in the hospital in Des Moines with two respiratory failures, a Life Flight trip to Mayo Clinic that resulted in a 7-month hospitalization with another respiratory failure that very easily could have ended in death, and four more surgeries, the mini fridge never crossed our minds again…until one day when TJ was in the general pediatric floor in the Francis Building at St. Mary’s Hospital.
I was sitting in the room with TJ like I did every day when he signaled that he wanted to ask me something. I grabbed a pen and paper, and I held his hand while he finger spelled, “C – a – n – I – s – t – i – l – l – g – e – t – a – m-i-n-i – f-r-i-d-g-e?” All the air left my body. I didn’t know what to say, and my mind raced to come up with an answer. I didn’t want to remind him of all of his deficits and squelch any shred of hope he — or I –had, so I answered, “Sure, of course, you can still get a mini fridge.” But then after answering, I immediately felt terrible that maybe I had just given him false hope. But what else was I supposed to do?
Later in the day, the pediatric psychiatrist and a resident came by like they often did a couple times a week. Their role was to talk with the patients and offer counseling, but since TJ couldn’t talk, they generally ended up just visiting with me. We were standing in the hallway just outside TJ’s door when the doctor asked how TJ was doing. I responded, “Well, he asked for a mini fridge for his bedroom at home this morning.” And then I added, “But I don’t know what he thinks he’s going to put in it because he can’t swallow anything.” And at that moment the ridiculousness of what our lives had become hit me, and I began to laugh uncontrollably. My son who was still cognitively all there but couldn’t swallow, open his mouth, hold his head up, sit up, had minimal control of his arms and was in a wheelchair wanted a mini fridge for his bedroom. A tangled mess of emotions had been swirling inside me for months. I was heartbroken he was injured, thankful he was alive, terrified of the future, hopeful for recovery, grief stricken beyond belief all rolled into one, and that tangled up mess was like an overfilled balloon begging for an outlet.
And as I stood there laughing, the psychiatrist and the resident stared at me with straight faces and never cracked a smile once. I imagined they were either thinking that I was behaving very inappropriately for laughing at my son’s condition or that I was having a nervous breakdown and needed to be thrown in the nearest padded room immediately. Either way, their refusal to join with me in my laughter made me laugh even more. In my exasperation about TJ’s condition, I had come to the place where I knew I could do nothing else but laugh about it.
What about you? Does life ever get to be too much for you and you just feel like throwing in the towel or catching the nearest bus bound for sun and fun? While jumping on a bus may sound like a good idea sometimes, it may end up causing you greater problems in the long run. Try laughing instead. God designed each one of us with an awesome ability to laugh. The old saying “laughter is the best medicine” has been proven to be true, and studies have shown laughter has powerful health benefits. It bonds us with others, lessens pain, decreases stress, and helps us cope with sadness.
Proverbs 17:22 of the New Living Translation says, “A cheerful heart is good medicine, but a broken spirit saps a person’s strength.” Scripture teaches that a cheerful heart is more than just great for the personality, it is good medicine for the body as well. But scripture also says that the person who lives with a broken spirit will feel the effects of it right down to their bones as their defeated attitude saps them of all their strength.
Laughter helps us to surrender control and place the outcome of our situation in the hands of a mighty God who truly loves us and knows what’s best for our lives. So the next time life becomes overwhelming and you’ve had just about all you can take, remember to laugh and place your trust in the Lord, and instantly He will give you a new perspective.
“She is clothed with strength and dignity, and she laughs without fear of the future.” Proverbs 31:25
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.”
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
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.
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.
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 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.