I could not get that song out of my mind the whole time I read the chapter and wrote this post. And you know there is a little part of you humming the tune right now. I find it ironic I could not get rid of a tune which talks about the fact you should Let it Go! Please tell me there is another Disney movie coming out with a new catchy song soon. Because this tune is getting old fast.
Speaking of old, reading this chapter reminded me how thankful I am that God saw me through my past.
I think for any parent there is nothing scarier than witness your a near death experience of your child. These feelings remain within you and may linger around for a long time. Twelve years ago I was in that situation. My son, Josh was sick and like we normally would, we took him to the doctor.
As we were waiting to go back into the room, Josh turned gray on us. The next few minutes went so fast. I could hear the nurse telling me, “Your son’s oxygen is at 55%. We are going to be taking him to the hospital away via an ambulance.” They put a nasal cannula on him for oxygen, set his level to four liters and suddenly men came in and whisked him away.
At the hospital we found out he has some kind of blockage and infection in his lungs. He spent weeks in the hospital while a medical team tried to figure what was wrong. When he finally was stable we went home with eleven different medications, oxygen tanks and concentrator, and we still had no idea what caused this. We made the three hour trip home confused.
Three long ambulance rides back to the hospital made us think we needed a second opinion and so I began researching for someone who specialized in lung diseases. I found a hospital in Denver (six hours away) that offered some hope, but they told us we would need to stay two weeks for intensive testing.
During this visit, we found out that his right middle lobe of his lung had collapsed because he had so much mucus, causing it stick together. After discussing several options, the only answer came as a decision to remove his right middle lobe.
The surgery was a success and post-surgery he was able to be on room air. Praise God, he did so well and a little over a month afterwards we we able to take the six hour drive home. We were told he had a chronic lung disease and would be in transplant stage by age 13. And a that point, I looked at the medical team and told them,
“But we have a bigger God and I believe different”.
Years went by and Josh was in and out of the hospital at least three times a year, if not more. Life revolved around how he felt, doctor’s appointments and hospital stays. He had some good days and so he took up activities like repelling, track and swimming. I encouraged him to try out anything since he would not know if he could do it unless he tried.
At age 17, he had Osteomyelitis (a bone infection) in his tibia which required him to be life flighted to Denver Children’s Hospital since we had moved to Steamboat Springs, approximately three hours away. While Josh flew to the hospital, my husband and I took the three hour drive there in our only car. Unfortunately, my husband had to return home to our girls and also to work.
The doctor’s decided Josh needed a bone biopsy to find what kind of infection he had in his tibia and since his lungs were looking bad they also decided to do a lung wash.
The morning of Josh’s procedures I prayed for knowledge for the doctors, for Josh to make through this, strength for me and another request I thought would be crazy to ask. I prayed that I would see a familiar face in a city that I knew no one at all.
When the procedures were done, a doctor came out to update me on Josh’s status. He said he was fine and then he told me our last name looked familiar. He explained he went to look at past records and discovered that he had done Josh’s first lung wash years ago. I could not help but smile and thank God for the familiar face.
A bone biopsy is a painful procedure. When I finally went back to recovery, I watched my son screaming in pain as his vitals went crazy. You know the scream where it hurts so bad that no sound comes out? The nurse kept apologizing about how she should have not brought me back to see him like that. I immediately slipped into mom-mode and explained it was okay, I am a mom.
I pulled out my iPod, selected God’s NOT Dead, placed it on the pillow next to his ear and hit play. Then I leaned toward him and started singing the words to the music in his ear emphasizing that our God is not dead. Suddenly his vitals began to improve, his pain became more tolerable and he was even looking better.
The nurse was confused and told me she had been working surgery recovery for years and had never seen anything like it. She kept asking me what I did to make him better. I began by telling her it was not me, but it was God and that we believe in His power, and testified to her right in that moment.
Josh has this incredible faith. And through the struggles of his illness, our family has matured in faith. Here is this child of mine, in the worst condition and he sweetly looked at me and said these words as he has done more than once throughout his life:
“Don’t worry mom. God’s got my back.”
Seven simple but powerful words from my child.
This hospital stay was the summer before his 18th birthday. As an adult, I knew he faced the challenge of taking care of his medical needs. I would remain his caregiver but overall he needed to know what was causing this and a diagnosis would do just that.
I found myself going to my prayer closet again like so many other days, where I prayed for God to help find out what disease Josh had to help him transition into adulthood. That Christmas, prayers were answered. While he was in the hospital for the bone biopsy they had done some DNA tests. From those tests we found out he had Hyper IGE Syndrome (HIES) or Job’s Syndrome.
His disease is named after Job from the Bible. Rather fitting for a child of such faith. Job had endured unspeakable suffering.
One symptom with Job’s Syndrome is severe eczema that sometimes turns into staph infections. Just like Job, Josh went through many trials and pain, but he never became angry. Josh always looked for a positive in every situation. He feels it has brought him and the rest of the family closer to God.
When it comes to other’s suffering, he feels like he is equipped to help them. It has showed our weaknesses and our strengths. We have grown in faith through it all.
Our family has dealt with so much through the years with Josh’s illness. My husband and I have had times where we did not know if we would stay married. I dealt with depression because I was having a hard time dealing with all around me. My heart was broken and I was angry. But with God’s help I worked through these issues. I know at times I cried out like the psalmist in Psalm 22:1.
“My God, my God, why have you abandoned me? Why are you so far away when I groan for help?”
And I would hear a gentle whisper reminding me,
“My grace is sufficient for you, for my power is made perfect in weakness.” (2 Corinthians 12:9)
All praise to God, the Father of our Lord Jesus Christ. God is our merciful Father and the source of all comfort. He comforts us in all our troubles so that we can comfort others. When they are troubled, we will be able to give them the same comfort God has given us. For the more we suffer for Christ, the more God will shower us with his comfort through Christ. (2 Corinthians 1:3-5)
Josh wanted me to share a few things he has learned along the way.
- Go to God when in need or not.
- Don’t get angry because it does not help your situation.
- Use your problem or illness to comfort others.
- Get ready to get close to God, don’t fight it. Be ready to listen.
- Don’t worry, God’s got your back. (aka, let it go!)
And Josh is right about not being angry about it. He has done some pretty incredible things because he has decided he will not let this illness hold him down.
He recently had a bout of illness that required another surgery. They removed another half of a lobe of his right lung and also glued his lung wall to his chest wall. He is doing great and gives all of the credit to God. In fact, he turned twenty a couple weeks ago.
And Josh reminds me not to let his illness stop me from my own dreams. And because of this I am able to blog, design logos, and help out with church with media.
So dear friends, don’t worry. God has your back! Let it Go!
Write to God about a painful memory from your past in your Study Journal or a notebook and date it. If you are able to look back and see how God used that circumstance for good, take a moment to thank God for working through the pain. If you can’t yet see His hand at work, ask God to comfort your heart with the truth that even though you may not know the why, you can always truth the Who.
A little music for the journey…
I promise, this song does NOT come from the Frozen soundtrack. I know you’re disappointed! Haha! Instead I have a beautiful song for you to listen to that talks all about letting go of our own plans and free falling into the promises that God will see us through.
Supplies for the journey…
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