Raw Honesty

Some days aren’t so bright and shiny as our friend Sarah says. I guess today is my day to be not so bright and shiny. Actually, it has kind of been my weekend.

Friday night I got to go to school and be a chaperone. I was looking forward to it - right up until Paul couldn’t join me because his back was hurting, meaning – yet one more thing we would do separately (not to mention missing the wedding we were invited to). Then I got there and a woman started to talk about how she was still sick after being sick all week. My thoughts started being selfish. I started wondering if I would be exposed to nasty germs. Someone had to go upstairs and help with concessions. I got out my anti-bacterial lotion and dosed up. The woman next to me said something and I was blunt. That’s not like me. She got big tears in her eyes. People can’t handle our pain and they shouldn’t have to. I felt badly for having said anything. I was thankful she offered to go upstairs. I could stay by myself and be the hall monitor. Pretty germ free.

I had a conversation with Mike yesterday. To be perfectly honest, Mike hasn’t made his decision about transplant yet. He is keeping his options open. He originally wasn’t all that keen on the idea. He remembered our CF friend named Doug who had a transplant and never made it out of the hospital. Doug spent 11 months in ICU. Mike had old, bad information. I felt badly. I didn’t realize that at only 8 or 9 years old he had picked up on some of what was going on. During Mike’s original transplant conversation his doctor asked what he thought. This was his response, “Well, some people say it’s great and others say, why build yourself back up just to go through it all again. I don’t know,” he shared honestly. He was trying hard to articulate his thoughts. I knew exactly what he was saying. So did the doctor. Mike is very thankful to have more time to think about his decision. It is a huge decision. He is not taking it lightly.

I told him that I would give him information. I promised to be real and let him know the good and the bad. We have been following Jim and Piper. They have had struggles and triumphs. They are heroes to me and I am thankful that they are allowing us to follow their stories. I found another perspective. I promised to share it all so this is what I shared with Mike:

I just felt today - again - like I feel so often. When will this end? When do I get a break? When can I feel better for a little while? And after seeing so many friends die, horribly, post transplant, I've ruled it out for myself, for now... after long deliberation. I reason that I want to die of CF, not of kidney failure or rejection - or worse, on the table as they slip in my lungs-to-be. I don't want to have to get so sick I am nearly dead... and to hope and pray for someone else to die. But on days like today I wonder... should I die twice, so I can live once?

Mike repeated the words, “should I die twice, so I can live once? That’s a really good way to put it,” he said as he smiled, pleased to have words now to articulate his feelings. I told him that a few months ago someone wrote in one of the forums that they wished they could see the “other” side of transplant. She explained how she could find a lot out about having a transplant but couldn’t find out a lot about the people who chose NOT to have one. Someone typed back something along the line that there wasn’t a lot out there . . . well, because a lot of those people are gone – stating the obvious. Mike and I laughed really hard. Now we’re not dissing anyone here. I guess you have to truly live with this day in and day out to understand. Everyone in the forum totally understood. No one was being a smart a$$ or anything. It just is what it is. I asked Mike if he had made a decision. He shrugged his shoulders. “Sometimes I think yes, it all sounds great and everything and other times . . . I don’t know,” as his voice trailed off. I told him I understand (as much as anyone without CF can). I will support whatever choice Mike makes 100%. I do NOT want to sway his decision one way or another – I really don’t know what my choice would be if I were in his shoes.

Today was church. The sermon was about forgiveness. I am thankful I am forgiven. There was a bake sale after – we steered clear. We took the little guys out for brunch. It was a buffet and I about had a meltdown. I can NOT do buffet’s anymore. Everyone touching the same utensils, no shield over the food. David spilled his milk and I swear we can’t leave a restaurant unless he has slid under the table or booth, touched the complete underside of the table, found and picked up every nasty thing on the floor . . . basically, being a normal 5-year-old boy.

We got home and I was agitated. I am tired of the thoughts that cloud my mind. Tired of the thoughts that can turn into temptations and sin. Thoughts about things like germs. Thoughts of the memories about the day we started talking about transplant and the doctor pointed at David and said, “That is your biggest risk.” I don’t want to think about risks of infection. I don’t want to think about insurance and Medicare. I don’t want to wonder how long we have until decisions have to be made. I don’t want to think that my son has to make life and death choices. I don’t want to think about how long he has left. I don’t want to think about whether or not I can or can’t help others because I might share germs with them or they might share germs with us. I don’t want to think about. . .

And I look at Mike and he is such an inspiration. He continues to fight. He continues to be positive. He continues to be real. And I learn from his example and I am forgiven. Just like the sermon reminded us. Mike is brave and he is a soldier. I am reminded to be thankful.

Today I am mourning the loss of innocence. The loss of freedoms and choices.
It isn’t good or bad.
It is real.
I will continue to pray and my heart will be healed – through forgiveness. Tomorrow is another day.

Psalm 28:7 The Lord is my strength and my shield;

my heart trusts in him, and I a helped.

Blessings to you.

P.S Sorry Becky for being so blundt. I was overwhelmed in these thoughts. Thanks for your understanding. And Seven Stars, who wrote the words above, thank you for your raw honesty.