Dr. Suess

"And will you succeed? Yes indeed! Yes indeed! Ninety Eight and Three Quarters guarenteed!"

Wednesday, May 30, 2007

We knew, we have always known

Post polio syndrome, scoliosis.

I've blogged somewhere in this blog.

Sometime, the post polio my husband has, and the scoliosis that resulted would be my husbands undoing.

The muscles would decide they are too tired. The twisting would cause the internal organs to just have to work too hard.

They told him when he was younger, he would never make it to 35. (they didn't even know what post polio was back then, yet, they knew it was coming, he was so severe!)

He passed 35 ... 37 ...40 ...and 42 ..and he just seemed to get healthier ..not worse.

As time went by and they addressed his different conditions ... it all seemed to work.

He hit 50 ...and he decided he did not like who he was as a person. He had few friends, and he was a hard man to live with. Bitterness was eating him alive. His health issues, was the least of his problems. He examined who he was ...and decided that what he knew about God, was really the key. He decided to put God first ... and instantly, his life changed. WE changed as a couple. WE changed as a family.

For the last year and a half ...we've enjoyed life more than I ever could have imagined. Life, has been good to us. God, has been good to us. We got our house, we have 2 great kids.

In my mind, I watched this amazing man walk and just knew that the doctor's had been wrong ... he was going to outlive us all. His determination to function and life a full life was amazing.

He was going to go back to school in the fall, finish his bachelor's degree. (Only 2 semesters, he was just 3 hours when I got sick, things change and technology changes in 15 years ...and well, now it's 2 semesters) He rarely walks with even the cane that he has.

Plans for a business, a ministry ... and to watch our sons grow up. Our youngest to be a chef ..and the oldest to be a doctor. His plans to help our youngest in his business adventure of owning a resteraunt ...and his plans of making a doctor son care for his medical needs.

And one day a cough won't stop ...and the next thing we know ...we're in the hospital. They can't find out what's wrong ...and he's degenerating. It's not pneumonia as first thought. I was upset ...we've been here before! I'm rather insistant! Go back 2 years ago! Look at his records! This has happened before ...only it hasn't.

The infection clears up ... the blood work is clear. The spudem culture shows body fluid ...and no reversable cause is found.

The worst possible diagnosis is given. End stage post polio.

The pulmonologist says that he's seen this happen ...some times you see it coming a mile away, and sometimes they are mowing the lawn one day, and the next day their body simply says "I'm done"

From all he knows about Don's functioning and who Don is.... Don is the latter. Yea, We've always known that would be the case.

I just thought .. he'd make it to 75 ... I really had talked myself into believing it would never happen. He'd outlive me.

So now, we have choices to make that no one should ever have to make.

We don't know where things stand.

Will he recover enough to make it for a while longer, and then in a few months this happen again? Will he make it enough to just have the bipap at night? Will he recover enough to come home with the bipap and be able to live full time on the bipap ...and is he willing to live on the bipap ...or would he rather go see his Savior?

He's fully aware today, of what's going on and what decisions we're facing. We have talked about this day for 20 years. We are standing as a couple, as one. We are standing together ... in prayer ..supported by our church family.

We don't know what tomorrow holds .. we don't know what decisions will be made. We don't know what the next hour holds. We simply don't know. We just have always known.


  1. I wish I could help in some tangible way. Be there to take care of you and the boys while you take care of Don. Please know that Chris and I are going before the Throne of Grace on Don's behalf. Thank you for blogging and let us know how to pray. I'm here.

  2. My heart breaks for you and your family. Like Angie, I wish there was something tangible I could do. But I will continue to pray and hold you in my heart. I'm always just a phone call away, I don't care when. Please know that I love you and you aren't alone.

  3. When we don't know what to do next, we do what we've always known to do: dive into the Word, seek His ace, take care of one another, seek His face, seek His face, seek His face...

    We are all doing exactly that for you all.

  4. I'm so very sorry PK. My heart is aching for you. Prayer sometimes seems so inadequate, yet what could be more comforting than the loving arms of our savior. Praying for you all.

  5. Still praying...

    I'm so grateful that your husband is making decisions from a place of righteousness (right standing) with God... that the bitterness is gone, and that you can make decisions together from a place of mutual love, respect, and gratitude.

  6. You know I will help you and be there as much as possible. You know you are loved and in our prayers. (((PK)))

  7. What an inspiring story. You will be in my prayers.

  8. Oh PK how very frightening. Im frightened for you and I am frightened for me. Im kinda watching my guy getting more tired and beaten down everyday myself....... I will be praying for you both

  9. Please check out the informaiton at http://www.post-polio.org/ipn/back.html and look at the articles under Breathing/Swallowing. See if any of these articles ring true for your husband's situation. Some polio people have weak respiratory muscles that get weaker as they get older. They have trouble coughing and can't get rid of the phlegm, etc. and then get an infection. The initial cause is muscle weakness or soliosis, which makes it hard to breathe. What do these people do? They use noninvasive ventilation only at night. The breathing machine (a little like, but not a CPAP machine that people use for obstructive sleep apnea)and a face or nasal mask. Using the device rests the muscles and gives people a good night's sleep.

  10. PK, Honey, Im so sorry for what you and your family are going through.

    I am keeping all of you in my Prayers and thoughts. I will keep checking for updates.


  11. PK -- my thoughts and prayers are with you, with Don and with your boys.

  12. PK thanks for visiting my blog and for the prayers. I will be praying for your family likewise.

  13. This is actually Grace (Stacey), Jeff's wife. I just noticed that I'm logged in under my daughter's name and can't figure out how to fix it. I'm the one from above under "Bee".

  14. Oh my God, PK. I just read your last couple of posts and I don't know what to say. And you've just started enjoying your new house. I'm so sorry. I don't pray all that much anymore...but I will be praying for you and Don. Sending ((((((hugs))))).

  15. Holding you and your family in my prayers.