My dear wife Julia passed away on May 13, 2022, after a seven year struggle with Idiopathic Pulmonary Fibrosis. Everything has changed for me now, but the same Unchanging God is still leading the way. As Julia and I learned so many years ago, every single day is a wonderful opportunity to breathe by grace and walk with Jesus Christ to the glory of our wonderful God.
Isaiah 43:18-19 NIV
“Forget the former things; do not dwell on the past. See, I am doing a new thing! Now it springs up; do you not perceive it? I am making a way in the wilderness
and streams in the wasteland.”
Julia’s Life Celebration Profile
Breathing by Grace
Seeing that everything is a good gift
and that what He gives is
2 Corinthians 9:8 (AMP), “And God is able to make all grace [every favor and earthly blessing] come in abundance to you, so that you may always [under all circumstances, regardless of the need] have complete sufficiency in everything [being completely self-sufficient in Him], and have an abundance for every good work and act of charity.”
Making a life, not just a living—Living by Grace
Julia Ewert’s testimony to living with a chronic illness.
In 2005 I worked for a radio station, doing a talk show over the noon hour. I loved my job for I got to share stories and music and encourage people to follow God with all their hearts. Problems came when I began to cough. My program had been live, but soon I had to tape it to edit out the bits of coughing that came when I spoke. Along with the coughing came weakness. On three occasions I was so weak after my shift that they had to call David to come and pick me up out of my chair and take me home, I didn’t have the strength to do it on my own. It became obvious I could no longer keep working.
After months of coughing so much that I could only talk in a whisper, they finally got it under control, but the weakness continued until I spent most of my time in the recliner and couldn’t get to the back of my house without stopping along the way to pant for breath. One Saturday night in early March of 2007 God woke me up in the middle of the night and said to me, “Julia, you’ve not told me thank you for this weakness.”
Be thankful for weakness? What are You talking about? God continued. “You no longer have any responsibilities, no one expects anything of you, nothing’s on your schedule. I’ve given you a chance to start over with your time and you’ve not told me thank you.”
I’ve learned that when God speaks, you answer, so I mumbled, “Thank you,” even though I was puzzled and confused.
The next day we had to go to Seattle after church to see some friends, and by the time we got to our hotel, I was so exhausted, David had to carry me inside. During the night, God woke me again and this time He said, “I am going to heal you, but it will be a long obedience in the same direction.” I had no idea what that meant.
The next morning we had breakfast with our friends and then set out to see the sights of Seattle. As we went, David kept pointing out places where I could sit and rest, but I brushed him aside and said I was okay. By the time we toured the aquarium, walked five blocks to Iver’s Restaurant for lunch, and walked through Pikes Place Market, it was obvious that God had healed me. For the next seven years I was symptom free.
When the weakness started to return I decided to hit it head on and not let it get as bad as it had been, so I went to the doctor. He sent me to a specialist who told me I had a disease called Idiopathic Pulmonary Fibrosis. He said it was fatal, and that I had two years to live. We were shocked! The part of the lung they biopsied in August of 2015 showed no living cells and confirmed the diagnosis. It is as if my lungs are turning to stone.
How do you live with a death sentence hanging over your head?
The Apostle Paul knew exactly what this was like. He had an illness and he was in prison, condemned to die. He recorded what God told him and his response to God in 2 Corinthians 12:9: And God has said to me, “My grace is sufficient for you, for power is perfected in weakness.” Most gladly, therefore, I will rather boast about my weaknesses, so that the power of Christ may dwell in me.
God’s grace is enough. It’s enough for pain. It’s enough for weakness. It’s enough when life doesn’t go the way we think it should go. God’s grace—that wonderful outflow of gifts He pours over us daily. He gives us His strength we have none, His peace when we are torn up inside, His joy for our sorrow, His forgiveness for our sins. His grace fills our lives each moment.
The writer of Romans puts it all into perspective when he wrote in chapter 8 verses 37-39: “But in all these things we overwhelmingly conquer through Him who loved us. 38 For I am convinced that neither death, nor life, nor angels, nor principalities, nor things present, nor things to come, nor powers, 39 nor height, nor depth, nor any other created thing, will be able to separate us from the love of God, which is in Christ Jesus our Lord.”
My life may be fragile, my health may be gone, but Christ Jesus my Lord is loving me with everything He is. His grace is totally enough to help me overwhelmingly conquer.
I love the devotional My Utmost For His Highest by Oswald Chambers. On May 19th he wrote: “God does not keep His child immune from trouble; He promises, “I will be with him in trouble . . .” (Psalm 91:15). It doesn’t matter how real or intense the adversities may be; nothing can ever separate him from his relationship to God. “In all these things we are more than conquerors . . .” (Romans 8:37). Paul was not referring here to imaginary things, but to things that are dangerously real. And he said we are “super-victors” in the midst of them, not because of our own ingenuity, nor because of our courage, but because none of them affects our essential relationship with God in Jesus Christ.”
God has proved Himself completely faithful to His word in my life. Let me tell you some of the ways He has been with me in trouble.
First, after struggling with the decision to retire for over a year, we decided it was time to leave our church and active ministry and move to New York. We felt God calling us here, but we loved our church and the people of New Hope, so the decision was hard. We called Dirk and Jennifer and told them we were moving to New York. They were ecstatic. Three days later we got the diagnosis from the specialist. Life in New York would be an end of life adventure.
We went to sell our home and the other two people whose names were on our deed—we had bought a 27 acre parcel together but we were given the house—refused to sign off on the deed, so we lost eighteen years of equity we had counted on to purchase a home here.
We needed a house here but had limited funds and special needs—like a bedroom on the first floor and no stairs—and there weren’t many available. Dirk and Jennifer selected one, and we made an offer on it, sight unseen. When we got here we could see that it needed work, but once we got into it, it needed much more than we had expected. We lived with Dirk’s parents for three months until the house became livable. It took six months more until we had a usable kitchen with a stove and running water. My patient husband did dishes all that time in the bathroom sink! It took a lot of patience and determination not to get discouraged as the work progressed slowly. We still don’t have a master bedroom, but it is coming this summer.
It would have been easy to complain and ask God why, but years ago God had impressed on our hearts that we were to live Breathing by Grace. That is, we were to accept what God gave us a good gift and know that His gifts were enough. We needed nothing else.
And God has proved Himself faithful and His gifts of grace have been enough.
Again the writer of Romans gives us God’s promise: What then shall we say to these things? If God is for us, who is against us? He who did not spare His own Son, but delivered Him over for us all, how will He not also with Him freely give us all things? . . . Christ Jesus is He who died, yes, rather who was raised, who is at the right hand of God, who also intercedes for us. Who will separate us from the love of Christ? Will tribulation, or distress, or persecution, or famine, or nakedness, or peril, or sword? . . . But in all these things we overwhelmingly conquer through Him who loved us. For I am convinced that neither death, nor life, nor angels, nor principalities, nor things present, nor things to come, nor powers, nor height, nor depth, nor any other created thing, will be able to separate us from the love of God, which is in Christ Jesus our Lord. (Romans 8:31-39)
God has been with us every step of the way. He provided friends who drove with us clear across the country, and in the middle of the winter as well! He provided Chuck and Sally Jo to house us as we prepared the house for occupation. We have a wonderful renter for the upstairs apartment so in spite of not having the funds we expected, we can make our house payment each month. Although we miss our church in Oregon, God provided this church and the wonderful people in it to encourage us, fellowship with us, and give us opportunities for service and growth.
A huge gift of grace happens each month for us. Although my illness is progressive and cannot be cured or turned back, five months before I was diagnosed, a medicine was approved that doesn’t heal the disease, but it slows down its degenerative properties. The medicine costs over three thousand dollars a month and we do not have insurance that covers prescriptions. God, in His grace and mercy, arranged for the pharmaceutical company to offer it free to me through its foundation. Every month when the pills arrive, we stop for a time of thanksgiving to God for His wonderful provision.
Other provisions God has graciously poured out on us are opportunities to share His love with those around us. We have great doctors here and my Pulmonologist teaches at Albany Medical School. He asked me to come to be part of his class on Idiopathic Pulmonary Fibrosis so the class could see my medical files and ask me questions. We prayed that I would have an opportunity to give God glory and praise for His gracious grace toward us. Imagine my surprise when the Dr. Judson’s first statement was, “Why don’t you start your story back in 2005 when you worked in radio?” What an open door! I got to share with the students about God speaking to me in the night, healing me, and giving me seven extra years of life. Do you realize if God hadn’t healed me then I would have died already? There wasn’t a medication to help slow the disease at that time. And by the time God healed me I was much farther along in this disease than I am now. It was wonderful to tell the students that I see each day as a gift and that each morning David and I pray, thanking God for one more day to breathe together.
Something that was a desire of my heart for years was living close to my daughter and grandsons so we could be part of their lives. God has granted that. We often pinch ourselves and say, “We are living our dream!”
We don’t know what tomorrow holds, but we do know Jesus Christ and we take to heart the words He spoke to Martha just before He raised her brother Lazarus from the dead. John recorded Jesus’ words in John 11:24-26: Jesus said to her, “I am the resurrection and the life; he who believes in Me will live even if he dies, and everyone who lives and believes in Me will never die. Do you believe this?”
We don’t know if God will heal me completely or if my life will come to an end. Either way, I am living a win-win. The words of Paul in Philippians 1 have become real to us: “according to my earnest expectation and hope, that I will not be put to shame in anything, but that with all boldness, Christ will even now, as always, be exalted in my body, whether by life or by death.”
If I live, I am here with you all. If I die, I’m in heaven with Jesus. It truly is a win-win if Jesus is our Lord and Savior.
God is so good. He has given us so much!
Julia Ewert (May 22, 2017)
UPDATE: December, 2019
Julia is doing well on oxygen 24/7, regaining strength after having experienced late summer an acute exacerbation of the idiopathic pulmonary fibrosis along with a serious lung infection. Without the oxygen she quickly becomes dizzy and the enormous weakness of earlier months returns. With it, she is able to keep a pretty good pace loving her family, keeping up with friends via Facebook, training me to cook, leading a Thursday morning Bible study on the Sermon on the Mount, training an assistant Bible study leader, and of course, keeping a steady stream of prayers heading up our amazing, gracious Lord Jesus.
UPDATE: october, 2021
There are challenges that we face everyday that we hope you can understand.
Julia awakened about 3:15 and it seemed best for me to fetch a cup of tea for her and get some background music up so she could return to sleep. She didn’t touch her tea before she settled back down and went to sleep. But then awakened again with a coughing fit. Sitting on the edge of the bed and feeling restless, she seemed unable to think clearly and felt so confused by everything that she quipped, “I feel like my mom.”
The big issues right now are not diarrhea, nausea, sleeplessness, blood pressure, thyroid misfires, overweightness, or muscle hurts – although all those are certainly a daily, and sometimes harsh reality. The big, constant issues now are (1) that her need for oxygen has increased dramatically and (2) that she fights pulmonary hypertension (her chest will ache to the point where we’re concerned about a heart attack).
Julia is more often now struggling to catch her breath and very often is extremely tired.
She has a hard time walking or being on her feet any significant length of time without feeling like she must fight for breath. We’ve stopped using the small pulse oxygen concentrator that we were using to travel with, except for car trips that take more than 10-15 minutes. The portable concentrator just can’t keep up if she’s moving about with it. We’re now using oxygen tanks more often because they give a steady dose of oxygen, and the higher rates don’t depend on how many breaths she takes. We’re also using the wheelchair went out and about, rather than the walker. These challenges for us have meant more frequent and longer naps.
Her specialist has verified that she’s losing ground with her lung capacity and both her doctors have adjusted her meds to help with the hypertension and stomach issues (next check-in with pulmonologist is Dec. 10).
A recent visit from out-of-state relatives highlighted these challenges for us. We enjoyed their visit so much, but Julia missed deeply not being able to show them the sights and groaned over the fact we had to constantly cut short whatever we did with them in order to rest. And then, after they left, that day and the next were given over totally to rest.
Julia has been a teacher all her life. For that reason, she has once again picked up leading a 10 AM Thursday morning study on the book of Mark for seven of our friends. But we’ve trimmed back her need to prepare by resorting to using some video help from Brandon Robbins.
And so, we grieve the losses, but with acceptance and hope before the Giver of Life.
- We grieve having to cut off time with family and go home to take a nap. We still get in the car and take drives, but we miss being able to travel more than a couple hours out-and-back to seek out God’s natural wonders or find another interesting hole-in-the-wall to have a cup of coffee and a piece of pie.
- Julia has lost the daily ability to write her memoirs (which are brilliant by the way). Now she looks for 4-6 hours 1 or 2 days per week when she might feel fresh enough to do that mentally strenuous work.
- Julia is now also missing deeply the loss of kitchen activity. Food preparation has been one of her last avenues for significant contributions to our family life, and while we still like to do this together it is falling more and more to me.
- We grieve the loss of mobility and not being able to take long trips to see friends and family.
It’s now 4:00 AM and she just had another coughing fit. This leaves her exhausted and when I go to see if there’s any way to help her, she says how sorry she is to be a burden to me. I try to reassure her, of course, that SHE isn’t and that the other stuff that is burdensome we bear together as God gives us strength. “I love you” always follows.
Nothing we do can remove the reality of greater limitations on our mobility and interaction with others. But we accept this as part of the path God has laid out for us.
It helps us to be able to turn to HIM and ask for quality time with our dear kids and friends. In this, like everything else, we have asked Him for the grace to be living representatives to life lived by His gifts alone – by grace.
Update: May 27, 2022
Julia passed away on May 13, 2022. We know she is with Jesus. Praise the Lord!
IPF Update – Julia Ann Ewert
My response to a post on a Facebook support group for people suffering from IPF as I have been for 5½ years helps to clarify what’s happening in our lives today.
Here is the posting from a FB friend (my response follows):
“Three years ago today, my world was turned upside down. Started with going to work at a place I, for the most part really enjoyed working at. Before I could even clock in, I was on my way to the hospital. While there, I was told I had pneumonia (again), but they wanted to do a lung biopsy, just to make sure cause something didn’t look right in the x-rays. Come to find out after a week in the hospital, it wasn’t pneumonia that the doctors kept saying I had (for months). I had something called Idiopathic Pulmonary Fibrosis (basically scarring of the lungs)….which until then, I had never even heard of before. Joking with the doctor, I said well at least it’s not Cancer (and there is a lot of that in my family). He said, No…it’s worse! I thought he was joking back…..he wasn’t. There are cures for many types of Cancers these days….This (IPF) has no cure….even a double lung transplant is no guarantee. So far, there are only meds to help slow down the disease. The past 3 years have been a roller coaster ride of emotions. I’ve went from being fairly active, working, enjoying life…. to becoming housebound and on oxygen 24/7.
“Then last year Covid-19 hit the US…which didn’t help matters at all. I only go to doctor appts and occasionally (very rarely) grocery shopping. Cause a common cold could put me in ICU or kill me.
“You never know what you have, until you no longer have it. Take NOTHING for granted, cause tomorrow it could all change in a heartbeat. I miss my family, kids, grandkids….I miss my friends, and hugs. I miss doing things, going places. I have to do my ‘Bucket list’ via YouTube. I hate wearing the mask, like most everyone else, but I have to. For once, I have to think about ME and MY health, instead of worrying about everyone else. I have my good days, not so good days, and then my REALLY bad days. Some days it’s all I can do to just not ‘end it’ once and for all. And yes, I have thought about it…but something keeps me here, prevents me from ending it. I’m not really living, I’m barely existing. And yeah, it sucks, but I know there are other people out there that have it worse than I do. Perhaps that is what is keeping me here, and the hope that they (The doctors/scientists) will finally find a cure for this horrible disease! When I was first diagnosed, the average lifespan was 3-5 years after diagnose.
“Well I’ve made it to 3….and with luck, I’ll be around a while longer to torment you all Sorry for the long post, just a lot of things going through my mind lately….Love you all!”
I completely understand. I’m 5 years in. I had a cousin diagnosed with cancer the same time I got the IPF diagnosis and doctors told me I had two years to live. I thought I’d rather have cancer, for my cousin could do something about her illness. Now, five years later, my life is reduced to quiet caution, but she has fought with excruciating pain and is now on hospice. I have told God I’m sorry for complaining about IPF. I am pain free most of the time, just extremely slow and exhausted. I am so grateful for Esbriet and my Imogen machine that allows me to get out of the house. (also, a 125 foot hose on my concentrator that reaches into my back yard.) This is NOT the life I imagined–I was diagnosed just as we decided to retire–but we thank God for each day we can breathe together and are so grateful we moved near our daughter so we can see our grandsons. They are learning compassion and about real love as they help me and as they see their grandfather care for me. (Their other grandmother has Parkinson’s, so they get a double dose as their other grandfather cares for her.) I also now understand how precious life is and, although I still go through times of feeling like I am just existing not living, I am so glad God is giving me time with my husband. We used to fight for time together, now we have tons of it and love it. I am also learning God has a plan for me and each day is a gift from His wonderful hand. I pray you will find joy in the journey and that God will become more and more real to you. Heaven is becoming very real to me. I pray it is to you as well.