(Written Wednesday night) Tonight as I sit here in the hospital room, watching my sleeping husband, so many emotions and thoughts fill my mind.
Grateful is one of those thoughts. Grateful to all of you who covered us in prayer today, grateful to those of you who daily lift us up to the Father, grateful to those of you who reach out and check in on us, and grateful to those of you who have helped us financially. As I stood over Jon tonight and prayed, I asked God to bless you. That He would rain blessings over each and every one of you. The praying army of God is so powerful and so needed!
This disease leaves you totally at the mercy of God. There is nothing I can do, say, or buy to fix it. Death is inevitable. We don’t know when or how long we have together. It quickly teaches you to live for just the day. But isn’t that really all we each have, is just today. No where can we find that tomorrow is guaranteed or promised us. Our plans, our dreams, our desires can all be shot in one diagnosis, a car wreck, or even an accident.
I think of the future of this journey. All the things God still has to teach and show me. Teaching me how to allow Him to be my total source of strength, my only refuge. Never in my life have I had to fully rely upon God like I am having to now. We have gone through some major hard times in our 31 years of marriage, but nothing holds a candle to this. I can’t change the outcome, and the future is so unknown. All I can do is TOTALLY put all my trust in His plan. Something I am having to learn to do every day.
So, I say all that to show you HOW MUCH your prayers mean to me. Those day’s when I think I just can’t do this anymore; God pulls me through. I can’t imagine what would happen if Christ was not a part of my life and prayers weren’t being sent up on our behalf. Don’t stop praying for us friends and family!! Every prayer is heard and answered; we are proof!
On Thursday we went back to Foredtert Medical College in Milwaukee for a scheduled visit with the ALS doctor. We meet with 10 different people, all who work with different areas dealing with ALS. It was a busy morning with someone new coming in the room every 10 – 15 minutes. A “Forced Vital Capacity (FVC)” test is done each time I visit to determine the the strength of my lungs. The test allows them to see how much force I have when exhaling. In late February I recorded a 58% and Thursday my results were down to a 47%. We were told that I need to consider having a feeding tube inserted in the very near future. The urgency is that if the number reaches 40% it will be too late to insert. The reason is that the anesthesia weakens the diaphragm and lung muscles and if my FVC is at 40% I could go into respiratory failure. Although I do not ‘need’ the feeding tube to receive nutrition at this point, it is suggested having it done now and be prepared for when I will. The surgery to insert the tube will be done in a couple of week.
Would you please pray that my numbers do not drop lower and that this surgery is successful and without complications?
While the disease seems to be progressing faster, I know that God is still in control. He has final say in what happens to my earthly body.
Not one second of this ordeal is easy on Cindy or my children. I think of them so often. I do not want them to hurt or be in need. Cindy is working extremely hard each day. She not only works a full time job, but then comes home and has to do household duties that I am unable to do. The physical toll is great, but the emotional and spiritual is at least as difficult, if not greater. Please continue to pray for Cindy. She is truly the hands and feet of Jesus for me at this time.
In the near future, Cindy will need to be with me on a more regular basis which means she will not be working full time. It humbles me to mention this, however I know if it is not mentioned then the need would not be known to some. What I am dancing around is our financial needs. We were told this week that I do not qualify for disability due to lack of contributions to social security and I do not take a salary from the church. SSI is a possibility, but would take up to five months before we receive any financial help.
If you are able and willing…my daughter Machelle has started a GoFundMe page for us. You can access it by clicking the GoFundMe button at the right of this page or visit the “How you can Help” tab. If you feel God leading you to help in any way, it would be of great help and I know that God will bless you even greater.
We both are carrying large burdens but learning every day to place those in God’s hands and let Him carry them for us. I don’t know what we would do if we did not have Christ in our lives.