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.
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?!”
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 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
“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
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.
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.
Hebrews 11:13 “All these people were still living by faith when they died. They did not receive the things promised; they only saw them and welcomed them from a distance, admitting that they were foreigners and strangers on earth.”
I lead a group at my church for moms of children with special needs. At the beginning of each meeting, we read a devotional that’s designed to center us on God before we begin sharing our hearts. Right now we are reading a devotional called Refresh: Spiritual Nourishment for Parents of Children with Special Needs written by Kimberly M. Drew and Jocelyn Green. After reading the devotional, we talk through discussion questions and anything else that is going on in our lives that only another mother of a child with special needs would understand.
Our devotional at a recent meeting for me was very insightful. It was titled “Sovereign Moments.” The story begins with Kimberly sharing her story about how her daughter, Abbey, came into the world. Because of the traumatic nature of Abbey’s delivery, it resulted in her having lifelong multiple disabilities. The doctor had written in his notes that it was because of “poor maternal effort.” Kimberly said what he failed to mention was that he was asleep in another room for almost the entire delivery and that right at the end of the delivery, he rushed in, looked at her vitals, and yelled, “Now!” A few minutes later, Abbey needed to be resuscitated. For many years Kimberly blamed herself while her family and friends blamed the doctor. She later came to accept that God could have intervened at any moment during the birth of her daughter and yet chose not to. Over time she grew to find comfort in the sovereignty of God.
Kimberly closes her devotional with this profound paragraph: “At thirty-five weeks pregnant, my dear friend Allison woke up from a nap covered in blood. She was rushed into an emergency C-section for a second-degree placental abruption. It was my obstetrician who saved her life and her sweet baby’s life. Mere men make mistakes in one moment and rise to do amazing things in the next. God is sovereign over them all.”
For me, prior to TJ’s injury, when a doctor entered the room, the heavens parted and the angels began to sing. I thought they were the smartest people on earth and knew all the answers. TJ spent more than a year of his short life in the hospital, and during that time, I began to view doctors very differently. Although most times I was fascinated by their brilliance, I also at times saw them as imperfect human beings like me who make mistakes, who do not have all the answers, who can’t undo a tragedy, who do not control life and death, and who are limited by only the knowledge God allows them to have. I began to realize that putting lofty expectations on them was unfair and should be reserved only for God. We knew there had to have been oxygen loss during TJ’s surgery, but his strange presentation after surgery along with an MRI that didn’t match his symptoms were a mystery to doctors, and after years of struggling to find answers, I finally came to believe that if God wanted us to know what happened, He would have given the doctors that knowledge.
Like Kimberly, our son’s brain injury and eventual death was caused by, in our opinion, a doctor’s mistake. Over time I too have also grown to find comfort in the sovereignty of God and that He also could have intervened at any moment during my son’s surgery and yet chose not to. Through the years, I’ve started to see the lives that could be won for Christ because of TJ’s powerful story, and I could also see God’s presence everywhere in our lives as He lovingly carried us during our unimaginable trial of suffering.
A friend of mine who is a nurse once told me,“Regarding surgeons, always listen to who the nurses recommend because they see the patients coming out of the OR.” We chose TJ’s surgeon because he was highly regarded in our community. We had heard nothing but wonderful things about him. He had done a lot of good for a lot of people. During the years following TJ’s surgery, I’ve seen many shocked faces from medical staff upon learning who TJ’s surgeon had been. I’ve come to the conclusion that this kind of surgical outcome was unusual for him. Even though my son’s surgery had a devastating result, I would still say his surgeon is a good surgeon. Although I didn’t understand it at the time, looking back I can see the look of pain in the surgeon’s eyes that first week as TJ rapidly declined, and even though it has been a process for me, I now have compassion for him.
I believe there were higher forces at work that fateful surgery day in 2013. I don’t understand it all, but I do believe God was in control that day. And because of the work that Christ did on the cross for me, I am forgiven, so, therefore, I can be obedient to Him and live a life of forgiveness trusting that He will make all things right in His time. I believe one day we will all see the far reaching effects TJ’s story has had for growing the kingdom of God. My prayer is that God will extract every ounce of good from TJ’s suffering and will use it for His glory.
What about you? Where in your life are you having trouble trusting the sovereignty of God? He says in His Word that He loves you and always has your best interest at heart. Take a step of faith today and trust Him. He will never fail you.