You move too fast
You got to make the morning last
Just kicking down the cobblestones
Looking for fun and feeling groovy
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Steve: Let’s go for Boba Tea
Me: Can we go for a walk?
Steve: Of course
Me: Can we bring Albert?
Steve: Do we have to?
Me: No, but he needs a walk as much as I do.
Steve relentingly agrees. Our conversation continues as we go across the walking bridge to the Hunter Museum, and then down across Veterans bridge to a downhill slope back to Coolidge Park. That’s where it gets hard for me to control my legs so I move too fast.
Steve emphatically says SLOW down
Did my husband just tell me, an ALS patient to slow down? uh-huh. In frustration, he says: “Everybody’s just gonna keep going and I have to watch both you and Albert. If something happens I have to choose between you and him. If that’s the case, Albert’s out of luck!”...in the tone of the only adult in the room. This has been the theme of our life and marriage. I was laughing so hard, slow down? I had to stop...I couldn’t even move or I’d pee myself.
Really, we both want the ALS to slow down. We want the morning to last.
By the grace of God, these are our days and our moments, full of laughter, enjoying the gift of life.
I once told my friend, I pray for the days before my illness, the days I never knew how short life could be. These moments with Steve, these laughs we share, and these days of Spring and sunshine, and peonies, and roses and azaleas, these are the days we live and forget I have ALS.
Yes, it has been confirmed it is ALS, and even though we knew... It is very different having a confirmed diagnosis and beginning to live it out. The next steps are pretty intensive treatments with infusions via a port they will put in. The infusions will be for an hour a day, two weeks on, two weeks off, indefinitely. This is to slow the progression. We will be traveling to the clinic at the University of Alabama in Birmingham every three months to meet with a team of specialists.
In the midst of this news, I had a retreat, time set apart for the weekend before Easter, and we listened to Matthew recount the story of doubting Thomas. It was not the doubt I connected with but that part where Jesus showed up in a locked room. I continued to pursue the idea of being locked in and that led me to Job.
Where God says: Who kept the sea inside its boundaries?
I circled the word sea and wrote vast beside it. I continued seeking God and how in the midst of my limits and boundaries of a body giving way to a motor neuron disease He would be my vast reservoir. Jesus shows up in the locked spaces, He makes ways across the dry ground, parting the Red Sea. and I live out my faith and my hope in Him.
So, join me this Spring—just kicking down the cobblestones
Looking for fun and feeling groovy!
Ba da-da da-da da-da, Victoria