My friend DeeAnn tells me I need to write through this journey. She says people need to know things for when they face this nightmare themselves. God forbid.
She says they need to know what to say. What to do.
I’m working on that list. All I have tonight is a different list…a list of
that I want to remember…
#1 is you wake up every day and know you’re still in a nightmare.
You really are.
I have never seen such.
I said this more than a few times today.
I am learning more truths in every moment.
Even in the midst of some agonizing days, my husband and I see blessings.
We count them together in prayers of thankfulness throughout the day.
You learn that prayer is a requirement. Often.
Tonight, our priest said mass for Sam.
We talked with family afterward.
Old friends called.
One stopped by with page after page of hope…brightly colored photoshopped images of Sam in various costumes…heartfelt messages to accompany them.
Tell them this is good.
You memorize those moments.
We received unexpected news today. The test that was scheduled for tomorrow will be postponed for a week.
We didn’t take this well.
But sharing the news and talking it through helped.
We don’t get to choose medical care like we do grocery stores. We don’t get to just walk out and start over with immediate changes taking place.
So, for now, we wait, as instructed.
You learn you are at the mercy of others.
You see that many people wait like you wait. It’s not right, but it is true.
We listen as a cousin tells us these are two of the top doctors that are handling the case. She works as a CCU nurse at the hospital where we are headed.
Hold your head up, Woman.
This reminder after one too many postponements. This reminder that it’s not my nature to be defeated.
People suffer. Relief is not instant.
During these days, the whole family needs support.
You do what you have to do.
You realize that some people do not have the capacity to help, to listen, to understand.
You forgive that.
You realize that you are better off with support and laughter and people who reach out.
You find that.
You know people misunderstand you.
You accept that.
You know it’s best for some to have distance from you right now.
You arrange that.
You do what you can each moment.
Sometimes it’s rubbing a back, holding a hand, passing a damp towel.
Sometimes it’s mimicking and laughing at the caller who insists Now, you are going to have to pay $150 when you come. When we explain it won’t be tomorrow, she insists Well, whenever you come, bring $150.
And you see the real meaning of love.
You treasure it.
You vow to keep it.