Story by Luke Schoenhoff
My son, Joshua was born December 4, 1986. At 2 months old, he was diagnosed with cystic fibrosis or CF for short (a chronic fatal illness).
His Mom and I were told the average age for kids who passed away was 8 years old.
Every couple of years, we would be told about some new miraculous advancement in treatment or medication had been discovered or developed that would prolong Josh’s life beyond the original 8 years.
He still lead a tough life. He had to take pig enzymes with every meal to help him digest his food. He had to have percussive treatments for an hour at a time, several times a day (gradually, we were able to get a vest he could wear instead of us giving him the treatments). This freed him up to be able to watch TV or play video games with his friends instead of getting “beat on” by his parents.
He had to limit his outside time due, either to extreme heat or cold. He wasn’t always able to spend as much time with his friends as he would have liked. Days at 6 Flags or the public pool often had to be limited as well.
We thought he might end up being a video game developer based on his interest in video games, but he grew up, went to college, and became the Senior Editor for the Florissant Valley Community College school newspaper. He had a great sense of humor and was a wonderful orator and writer. He enjoyed many different genres of music. Josh was baptized in Christ in 1990.
He met a wonderful girl (April) who stood by his side through all of his problems, even to the point of changing his colostomy bags and many other unpleasant duties associated with his illness. She was God’s heaven-sent angel.
The CF still gradually took it’s toll. In November of 2008, he had a double lung transplant. He had to take a number of anti-rejection medications, as well as continuing his CF meds. The lungs were not a permanent fix, as the CF gene is in every cell in his body. He developed diabetes and had to take insulin shots several times a day due to the failure of his pancreas.
We watched as he gradually gained weight, was able to breathe again and start to enjoy his life quite a bit more than pre-surgery times.
At a Christmas party in 2010, he contracted the flu (he shared shot glasses of tequila with relatives). He began to develop respiratory symptoms shortly after that and gradually they became worse. He was bound to a scooter and on oxygen full time.
He married April on May 7, 2011 at the courthouse in St. Louis.
A week later, I got a call that he was being admitted to Barnes Jewish Hospital in St. Louis in severe respiratory distress. When I arrived, he was barely able to breathe. We had a very brief conversation. I told him I loved him and was proud of him. His last words to me were “I love you, Dad.”.
They took him away, and they had to put him in an induced coma to await his second double lung transplant. We all took turns being with him 24 hours a day, talking to him, reading to him and playing his favorite music.
On June 9, 2011, his doctors got his family together (his Mother, myself, my wife, Hope, April and his older Brother, Gregory and Greg’s wife, Katrina). They told us that Josh was no longer strong enough to survive the surgery and he would continue in a slow, painful decline until he passed. There was no chance he would even become conscious again or get off of his ventilator. They asked us all how we wanted to proceed.
I had always believed in God’s abilities to perform miracles, from long before the moment of my children’s birth and continuing on through the many trials and tribulations that had occurred throughout the years. I was trusting God to give us answers to (what we felt) was an impossible choice to be made. After quite a bit of discussion, we all agreed that Joshua wouldn’t want to remain in his current condition. We decided to take Josh off of life support and put his fate in God’s hands.
Each of us felt as if God was telling us that he had plans for Joshua, but they weren’t to be fulfilled here on Earth. His future would be in Heaven.
On June 3, 2011, Joshua passed away with his loved ones surrounding him. Many tears were shed, but we all knew Josh was going to be pain free and living a Heavenly life, we couldn’t even imagine. We would be together again one day with no worries.
From the original prognosis of 8 years, God’s miracles gave us 25 wonderful and glorious years with him. April was 21 when she married Josh and spent 3 weeks with him during the hardest and most painful time of his life. She went on to become a respiratory therapist for CF patients.
Without my faith in God and Christ, I don’t think I could have made it through Joshua’s passing, but it gave me strength knowing that one day I would see him healthy, laughing and full of joy. My faith has never wavered, nor will it, because of God’s promises to us.
Joshua, you know I miss and love you and think about you every day.
Love you, Dad.
Postscript:
When you pray for someone to be healed but the opposite happens, you sometimes wonder if your prayer wasn’t good enough or if you aren’t righteous enough or your faith tank is too low. Other times you wonder why some people get that wow-God, triumphant miracle story while you sit there still praying, still waiting, changing up the words you pray to find that perfect key-fit to unlock the miracle. When it comes to God healing or choosing not to heal, I know the right answer in my brain, but my heart doesn’t get it and keeps asking, ‘why?’
A very wise friend, Tia Willin Collin said this and in one fell swoop, I called a truce between my head and my heart. Here’s what she said about God sometimes choosing not to heal:
“Wait what? God doesn’t always heal? I disagree! Prayers for healing are the safest prayers we can pray because God always says ‘yes’. Now…let’s define ‘yes’. If he heals you here, your healing is temporary. It’s still good and amazing, but it will not last forever. You will get sick again. You will die. I’ve never met a 2,000 year old Christian! But if he releases you from your mortal body, and heals you in THAT way, then, you are healed forever! No more sickness, no more pain, no more tears. The problem isn’t, sometimes God heals and sometimes he doesn’t, the problem is, we’ve begun to cherish ‘temporary healing’ over ‘eternal healing’ so much so, we now dismiss eternal healing as any type of healing at all.”
To learn more about cystic fibrosis go to: https://www.cff.org/intro-cf/about-cystic-fibrosis
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