Dr. Suess

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

Friday, June 01, 2007

TALK About it Talk ABOUT it Talk about IT

First, the update. Every question posted in the previous post is still on the table. They are moving him to a long term care facility. We will see if we can get him off the external ventilation during the day, or if this will be a way of life, and if, he is willing to live a life this way if he cannot get off the machinery.

He will most likely have a brand new baseline in life. Oxygen full time, and most likely, walking again, isn't going to happen.

Questions are being shot at me right and left about what can the church do for me. What calls need to be made to Habitat to accomodate our house ...what do we need to do.

The answer is simple. Nothing.

While we were really not prepared for this to happen in reality, in practicality, we honestly did know it was going to happen. There is no step leading to our house. There is a ramp from the driveway to our door. The doorways are an inch wider than most ..and the bathtub has a bar. This house was built with the idea that one day, the post polio would become an issue for Don, and we did not want to have to modify the house at that time.

The decisions to be made about machines, and life sustaining are simply a matter of what amount of healing, restoration can we gain for his body. How much recovery can he get. The choices he's made, have long since been made, discussed, talked about till we were blue in the face. I could recite them on ambien. In the middle of chaos, I know exactly what his choices are ...and this weekend, I knew on the worst day, when he was crashing, and it was clear that things could go sour very fast, what choices might have to be made. We'd talked so often, and so thoroughly, there simply is no questions of 'what does he want?'

Our faith, is so solid, we feel the presence of God, strong ..and solid .. in the middle of this horrible storm, we know beyond a shadow of a doubt, that He is there ...and that we are in the palm of His hand.

Quite frankly, I'm not ready for my husband to leave my presence, but, I know that he will not be hurting if he does go. I will be heartbroken, I will be more sad than I can even imagine being. But, my faith, is probably on more solid ground than it's ever been. I feel God's presence as much as I ever have.

I've watched the families in the ICU waiting rooms ... as they've not known what their loved one would want. They are try to make life and death decisions for someone who isn't awake, and they have no idea what that person feels about extended care, extensive machinery ... or quality of life issues. They have no peace, they have only confusion ...and they feel totally disconnected from their loved one.

Even when Don was at his worst, I knew that because we'd talked about it so often, we were in this together.

I beg of you, talk to your families and friends ... how do you feel about your care when the bleak comes. Talk about every imaginable situation. What kind of situation is ventilation ok in, when is it not. Is it ok for pneumonia? Is it ok to see if they can find improvement for a few days, then they need to turn it off if there is none? What are your wishes, talk about them ... talk about the details. And make sure that you're prepared for a new way of life if something happens.

Don't let the worst catch you in a state of confusion. It doesn't help things.

I feel like I've been pushed through a key hole and pulled out backwards this week and the one thing I don't feel, is confused. It's a matter of waiting to see how the circumstances unfold, and knowing we're in God's hands.

It's not fun. It's harder than I could ever have guessed. But we talked about it. You should too. You can't imagine the peace of mind it brings.


  1. I've been so busy lately...

    Haven't been by to check up on you.

    I'm sorry.

    I'm sorry for not stopping by more often.

    And I'm sorry that you and your family are having to go through all of this.

    I'll be praying for all of you.

    God Bless You.

  2. Just a lurker swinging by.

    I am so sorry that you are going through this nightmare. I want to wish you and Don all the very best - and to be honest I do hope, desperately, that a little mechanical assistance is acceptable to Don because... well, as long as you're alive, there's something to work with there.

    There is a fantastic blogger who uses a ventilator, power wheelchair, nursing care at home etc, his name is Mark Siegel and he blogs at http://www.the19thfloor.net/

    All the very best.

    Becca (who uses a wheelchair and attendant care, but nothing else just now)

  3. PK..Only you could be going through such a crisis and think enough of others to tell us things we need to take care of. Thank you!

    Honey, I wish a i had a magic wand for you and your family. It is comforting to know that your faith in God is exactly where it needs to be. So many people face these kind of crisis without that faith.

    I hope you are also trying to take care of yourself through all this?

    Love you!


  4. I just found your blog from your comment at Dream Mom. I think God sent me here to add to the people who will be praying for you and Don. May His love and strength be very real to you as you go through this.

  5. You're an amazing woman. Thank you for suddenly appearing in my life to make me think... about where I am with God, my hubby, my family, everything. Stay strong my new friend and know that there are prayers going up for you and loving going out for you. Hugs to you and your family!

    Grace (Jeff's wife)

  6. Great reminder to us all...my prayers remain with you, Don and your sons during this time.

  7. Dearest Baby Blogsis,

    It hurts to see you hurting.

    All my prayers and best wishes and psychic hugs to you both!

    You are in my thoughts constantly.