I wrote this six years ago today. I’m including the entire post so you can understand the depth of what we were facing and can appreciate the relevance of the advice.
Backstory – Don was in the hospital with aspiration pneumonia and in an advanced state of ALS…he had been intubated and it was time to remove the tube and see if he could breath with an assisted non invasive device those with ALS often need.
This was the update I posted on December 2, 2016
12/2 update:
This is one of those informative, yet sobering posts. We finally have a plan in place for removing the tube.
It will be taken out on Sunday and Don will immediately begin using his Trilogy (non invasive ventilation). If he tolerates it well we will be here over night and then go home some time Monday with hospice care. I’ve struggled with how to share the plan and be positive and hopeful, and at the same time convey the gravity of all of this. He’s weak…so very weak and tired. His lung is still collapsed. He’s done well on all his weans, but he’s very tired after them too.
DETAILS: The ugly reality is that this is touch and go and they can’t give us any “odds” or predictions. We have the potential to be facing a pretty grim situation. It’s Don’s wish to not have any invasive measures taken to sustain his breathing, so if the Trilogy doesn’t work right away, it’s our desire that he would be stable enough to be transferred home, where he can spend time with family and friends, until he transitions from his earthly home to his heavenly dwelling place. It’s our most FERVENT prayer, that he can come home WITH the NIV. I just feel it’s important for people to understand that he isn’t “healed” and isn’t expected to just bounce back if the tube removal and transition to NIV is successful. He still has an INSIDIOUS disease that’s taking over his body.
We know people across the world are praying for all of us and that is so greatly appreciated. With that said – I am going to step out and be bold and ask that if you choose to offer comforting words to any of us, that you not throw bumper sticker theology our way.
JUST NO!!!!!
We know that God has a plan and that He will sustain us. But I ask, actually plead with you, to walk with us through this situation. It’s raw, ugly and at times absolutely overwhelming!! Please don’t try to make it paletteable, pretty or tidy, because it’s none of those things.
You maybe wondering what to do or say? So here’s my advice.
When you don’t know what to say, say that – not some Hallmark greeting card answer. Tell us you’re sad and angry. Tell us you can’t imagine what each of us are going through or feeling. Or say nothing and just hug us or take our hand.
“Being there” doesn’t mean having something profound or spiritual to say – it’s BEING there – to listen, to do things for us, to hug us or to simply sit with us in our quiet, broken state, and grieve the reality of what we are potentially facing.
I’m not suggesting God can’t perform a miracle, but we must be prepared if He doesn’t. I’m cautiously optimistic that Don WILL come home on the NIV, but there have been times in the last week, that I wasn’t sure he’d make it through the night or specific episodes where his oxygen dropped drastically.
I’m ragged and raw right now. My heart aches for his precious mother…his brothers and their beautiful wives, my family, all six kids (two of which buried their own dad nine years ago) and myself. This is so hard and painful.
If you follow my blog, you know Don came home on Monday December 5, but sadly died the next night.
That evening my sorrow increased and my need for understanding and comfort increased greatly. And friends and family who stood with me and held and hugged me meant more than anything else.
If you are walking a path of pain and despair with other people, thank you in advance for thinking before you speak, and if you are the one needing comfort, I hope you feel the love and support you are thirsting for.
As always – much love from my re-assembled heart to yours.
She-Kept-Going 