Dr. Laundry

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?!”

TJ & Dr. Landry
August, 2013

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.

TJ & Travis walking in the courtyard at Mayo
August, 2013

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

The Deep Water

Respite Care
Part 3

Who do you turn to when you feel all alone and in deep water?  Where do you go when no one understands and may even lack sensitivity to the struggles you are going through?  Sometimes we try friends, family, church, medical providers, counselors, support groups, organizations all to no avail.  No one has the answers. No one seems to get it. No one stays by your side. What do you do now?

There was a time when I was all alone and in deep water, and I turned to Jesus.  He showed me that He was with me every step of the way and was walking right by my side.

Matthew 14:22-33
“Immediately Jesus made His disciples get into the boat and go before Him to the other side, while He sent the multitudes away.  And when He had sent the multitudes away, He went up on the mountain by Himself to pray. Now when evening came, He was alone there.  But the boat was now in the middle of the sea, tossed by the waves, for the wind was contrary.

Now in the fourth watch of the night Jesus went to them, walking on the sea. And when the disciples saw Him walking on the sea, they were troubled, saying, “It is a ghost!” And they cried out for fear.

But immediately Jesus spoke to them, saying, “Be of good cheer!  It is I; do not be afraid.”

And Peter answered Him and said, “Lord, if it is You, command me to come to You on the water.”

So He said, “Come.” And when Peter had come down out of the boat, he walked on the water to go to Jesus.  But when he saw that the wind was boisterous, he was afraid; and beginning to sink he cried out, saying, “Lord, save me!”

And immediately Jesus stretched out His hand and caught him, and said to him, “O you of little faith, why did you doubt?”  And when they got into the boat, the wind ceased.

Then those who were in the boat came and worshiped Him, saying, “Truly You are the Son of God.”

So let’s imagine this setting.  Jesus tells his disciples to get into a boat and go to the other side while He stays behind and goes up on a mountain to pray.  The disciples were alone without Him on the Sea of Galilee.

The Sea of Galilee was well known for having sudden storms that come out of nowhere, and that is exactly what happened in this passage.  Now the disciples had been caught in a similar storm before, but that time it was daylight and Jesus had been with them. This time Jesus had sent them out on their own.

On that stormy night, when the disciples were in the boat all on their own, I wonder what they were thinking?  I wonder if they looked out at the dim outline of the hills where they knew He was and wondered why He had sent them out and not gone with them?  Did they feel like maybe He didn’t care and had more important things to do?

But unbeknownst to the disciples, Jesus had His eye on them the whole time.  Mark says in his gospel that He saw them distressed for hours before He went to them.  Why would Jesus do that? Why would he let his followers struggle and toil with fear and uncertainty?  Well, I believe that’s how Jesus trained them to learn to live without His presence. And that was a symbol of what the lives of future followers for generations to come would experience as well.

You see, sometimes Jesus sends US alone into a storm.

  • When you’ve lost your job and you have no idea how you are going to pay this month’s bills.  
  • When you get the diagnosis that your spouse has a terminal illness.
  • When your child has flunked out of college and is headed down a bad road and you are concerned for their future.

Yes, sometimes Jesus sends us into a storm, but He has His eye on us the whole time as well.

After the disciples had struggled for quite awhile, when they were in their greatest hour of need, Jesus came to them walking on the water.  The disciples were afraid because they didn’t recognize him. Were their minds so absorbed in their circumstances that they failed to recognize the One who had come to save them?  Or did they judge incorrectly because it never occurred to them that Jesus would miraculously come walking across the water to rescue them from their plight? Until they heard, “It is I.  Do not be afraid.” What a glorious sound that must have been! Although they were deceived by his appearance, they knew Him by his voice.

Like the disciples, sometimes we also fail to see the work that Jesus is doing in the storm, and we forget that He has His eye on us the entire time as well.  We can become consumed with our circumstances and our fears and our doubts, and we forget that He is there and wants to save us. Jesus can come to us in miraculous ways also.

TJ and I at Mayo in 2013

In December of 2013, my then 17-year-old son TJ was very sick from a brain injury he received while undergoing heart surgery in April of that same year.  The brain injury left his mind cognitively intact but his body severely disabled. At this time in December he was a patient at St. Mary’s Hospital at Mayo Clinic in Rochester, Minnesota.

This was during our second Life Flight trip to Mayo after his surgery.  He had initially spent four months there right after surgery and then was discharged, but he declined rapidly after coming home, so he was flown back up there a second time.

By this time in December, it had been eight months since it all began.  Things looked bleak, and there was no end in sight. I stayed in Rochester with TJ while my husband stayed back at home and worked.  I was worn out, scared, and alone. My girlfriends and family were three hours away and had families of their own to take care of. TJ’s brain injury had hit us out of nowhere, and like the disciples, I was in a storm and all alone.

I was staying at the Ronald McDonald House a couple of blocks down the street from the hospital.  My routine every day was I walked up to the hospital in the morning, stayed all day, and then when it was starting to get dark, I walked back to the Ronald McDonald House to sleep for the night.

One particular morning, it was snowing outside, so I pulled out my enormous black coat a friend had graciously given me.  It went all the way down to my ankles and had a huge, over-sized hood that I had to hold up with my hands or it would flop over my face and I couldn’t see.

I rode the elevator down to the lobby and grabbed a granola bar as I headed to the door. I then started my way up the snow covered sidewalk to the hospital. The snow was gently falling, and even though traffic was heavy that morning as people were making their morning commute, it was kind of quiet.  There was a stillness in the air, and everything was white and beautiful.

I had been holding my hood up with my hands as I walked along, but my arms were growing tired, so I decided to let go of the hood and just let it do what it wanted.  I couldn’t see, so I resolved to just keep my head down and watch my feet as I trudged along.

I could hear the snow crunching under my feet as I walked, and my legs felt heavier with each step I took.  I had just woken up but was still so tired…..and I was afraid. My mind was racing with thoughts like: What if TJ never gets better?  What is his life going to look like? What if he doesn’t get rid of that trach? How am I going to take care of his trach and all of his respiratory problems?  How are we going to live like this?

So I’m thinking all of these thoughts, and I’m tramping along through the snow, and then…..for one fleeting second, when I was in my hour of need…..I felt the presence of Jesus walking in step beside me.  I caught my breath and abruptly stopped. I threw off my hood and looked beside me, but no one was there. I was stunned. I had never had that happen before. I cried out loud, “Jesus, please stay. Please don’t go.”  But the encounter was over, and the feeling was gone, so I turned and continued my walk to the hospital…..but with a little bit lighter step because from that point on, I knew that Jesus had eyes on me and I was not alone.

  • That day my relationship with Jesus changed.
  • That day I believed that Jesus was with me in the middle of the storm even when no one else was.  
  • That day I believed that Jesus shows up when I am in my hour of need.  
  • That day I believed that Jesus was a friend who was even closer than a girlfriend.
  • That day I believed that Jesus was walking by my side even in a far off place, like Rochester, Minnesota.

You see, Jesus shows up when times are hard.  Jesus performs miracles when we are alone and afraid.  He speaks to us when we are in our deepest sorrows and in the middle of a storm, and when we hear his voice, we cry “It is the Lord!”

In verses 28 and 29, Peter said to Jesus, “Lord, if it is You, command me to come to You on the water.”  Now remember at this point in the scripture, the boat is in the middle of the lake where the water is deep.  Why would Peter even think to make such a bold request? Because at this point in Jesus’s ministry, Peter would have been used to seeing miracles performed.  His faith and trust in Christ had been built and he was at ease leaving his comfort zone when Jesus was standing by. Jesus’s answer to Peter’s request was simply, “Come.”

Now notice what Jesus did not say.  He did not say, “Okay, Peter, come and bring James and John with you because it’s really scary out here in the deep water and you are going to be afraid, and I don’t want you to be alone.”  Jesus didn’t say that because sometimes when Jesus calls us into the deep water, we have to go alone, and we have to learn to depend only upon Him. We don’t get to take Mary and Susie with us.

When Jesus bids us “Come,” when we get down out of the boat and step out into the deep water, if we do not lose sight of Him despite our sometimes harrowing circumstances, what we learn is…..

  • The deep water is where adventure is.
  • The deep water is where we see miracles happen.
  • The deep water is where our faith grows.
  • The deep water is where we accomplish things we never knew we could.
  • And most importantly, the deep water is where Jesus is.

When Peter realized the miracle he was taking part in, he took his eyes off Jesus and looked at the chaos around him……and he began to sink.  He cried out, “Lord, save me!” And Jesus stretched out his hand and caught him. Even when Peter failed after participating in a miracle, Jesus was there to save him.

Sometimes we too take our eyes off Jesus and we begin to sink….

  • When our minds race with anxiety about our drug-addicted child’s unknown future, Jesus is there to save us.
  • When our fear runs rampant about our elderly parent’s health, Jesus is there to save us.
  • When we are exhausted and lose our temper with our children from the demands of raising a young family, and we are afraid we won’t be able to keep this up much longer, Jesus is there to save us.

Jesus and Peter then got back into the boat, and all the disciples began worshiping Him.  The disciples had progressed quickly from fearing the storm to praising the name of Jesus because of the power Jesus had shown in walking on the water and the love He displayed by taking care of a sinking Peter.

Jesus isn’t just walking toward us, like He did with the disciples that stormy night on the Sea of Galilee, but He’s walking WITH us, just like He did with me on that cold, snowy, lonely morning in Minnesota.  He’s walking right by our side. Even though we can’t always feel His presence, it doesn’t mean He’s not there.

Jesus is closer than a dear friend.  In fact, He’s our best friend, and He truly is the Son of God.

Psalm 68:5-6
“A father of the fatherless, a defender of widows, Is God in His holy habitation.  God sets the solitary in families; He brings out those who are bound into prosperity; but the rebellious dwell in a dry land.”