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.’”