Endurance

This was one of Lizard's favorite videos. He dreamed of doing the CTR and the Tour Divide. I've recently been realizing he accomplished something much more difficult. He battled Parkinson's every single day for eight years, and he kept fighting even when he felt like crap. He is my hero.

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Waiting for Time

My family keeps commenting on how easy it is for them to now see how quickly Parkinson's robbed Lizard of everything he loved. We go through photos, and they are amazed at the difference through the years, especially the last few months.

I knew we had reached end stage because he wasn't eating much anymore, and he was exhausted all the time. I knew from the caregiver support group we were rapidly approaching a stage neither of us wanted. Yet I was kind of in denial, I guess. I thought we'd have a couple more years.

I didn't see how quickly it was moving the last few months because I was with him 24/7. It wasn't until I began looking through photos afterward that I could see just how hard he was struggling every single day.

I am so thankful his suffering was not prolonged. I am so grateful he is whole now. I am so glad I took him to Moab for a belated 20th anniversary celebration in December, even though the trip was difficult for him. He really wanted to go. He picked the destination. He was never able to travel again after that.

I read through Lizard's 2019 journal while I was trying to prepare his eulogy, and I was shocked to see how much he was suffering just one year into his diagnosis. He tried to live life to the fullest, even though every single day was an uphill battle for him. He didn't complain to me, and he always tried to endure everything I planned, not knowing how hard everything was for him. Man, he was an incredible husband!

His journal taught me things I didn't know. Our cycling mileage really tells the tale. 2017 was the year I had neck problems. He was diagnosed the following year.

His final six weeks were traumatic. Parkinson's is brutal. Lizard did not recognize me most of his final six weeks. His final three months were so difficult for him. He'd been telling people for years he still had a good 20 years left. Then, last year, he started saying it might be only 10 years. Nearly every day for the last couple of months, sometimes multiple times a day, he would tell me he was afraid of dying.

I would tell him, over and over again, he will be surrounded by his loved ones on the other side. I would tell him he will be whole. I would tell him he will no longer have Parkinson's.

The final week was beyond anything I could have feared. I walked him with a gait belt (just like when he had his back surgery in 2020) the entire circumference of the hospital on Saturday. Monday, he could no longer get out of bed. Tuesday, he could no longer talk. Wednesday, he could no longer swallow. Thursday, his eyes never opened again.

On Friday, he came home via hospice. I prayed I'd be able to bring him home, which I was able to do. And I prayed I'd be able to hold his hand when he crossed over.

I stayed right by his side for the next 60 hours, taking only restroom breaks when a family member was able to sit with him. I was so afraid he would leave while I was not in the room, so I made it super quick every time.

My alarm was set for his medication every four hours. I fell asleep on a mattress on the floor next to his hospice bed at about 10 p.m. Sunday night. The next alarm would be at 11 p.m. I bolted awake at about 10:35. I knelt next to him and held his hand. His fingers were ice cold. I told him I love him. He raised his hand about two inches, and then it fell. He let out three quick, shallow breaths, and he was gone.

There were many, many tender mercies that final week. I have so many reasons to be grateful. And so many reasons to miss him. It is my understanding time passes much more quickly for those in heaven than it does for us, here. For us, it feels like an eternity of separation. But for them, it feels like a few minutes.

I hope that's true. After the agony he endured, I hope this temporary separation is just a blip in eternity for him. He deserves happiness. And peace.

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Friday Fortius

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Grief

Less than 72 hours after he came home, Lizard valiantly completed his Parkinson's battle.

It's 3 a.m. I've been awake since 1 a.m. I can't sleep. I wake often in the night to help Lizard, and he's no longer there.

I miss Lizard. I want back the Lizard who didn't have Parkinson's. The Lizard he is now. Now that I can't see him. Hold him. Be wrapped in his arms.

My gosh, I miss him so much.

I didn't think I'd have to go so long without him. I thought we'd have more time.

I know he is whole now, and I know we will be together again one day. I'm trying to cherish and be thankful for all the adventures we shared. I'm trying to remember how exhuberant he was every morning until a couple of years before he was diagnosed with Parkinson's. I'm trying to remember every joyful moment with him. I'm doing my best to be faithful and hopeful. There are moments of exquisite joy. There are moments of excruciating agony.

I would never want him to have to endure that suffering again. But I miss him so much.

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Forever Knocks

I suppose I owe you a bit of an explanation.

Lizard went into the hospital 10 days ago, and the determination at the time and for the next three days was he would need to be in a long-term care facility. I was devastated.

Within four days, the goal changed from long-term care to hospice. I had seen this coming, but I thought I had more time. Much more time.

Lizard is at home with me now, and we are honoring his Advanced Care Directive. I'm doing my best to try to make him comfortable and to be there for him.

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Friday Fortius

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Shaking Shadows

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Glorious Sunrise

(affiliate links to my designs)

We've had some spectacular early morning and late afternoon color the last few weeks. Lizard typically is sleeping peacefully, so I step out into the backyard and shoot over the fence.

Yes, I'd rather be shooting at a body of water, getting a great reflection, or shooting silhouettes in my summer garden, or shooting the pink or lavender glow on a fresh blanket of snow!!!

Yet, it is such a big blessing when Lizard is able to sleep peacefully. We're hoping, in time, better sleep might relieve some of his symptoms.

Regardless, colorful skies are among the best Christmas presents in my life!

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My Chains are Gone

Thanksgiving comes a week early for me this year!

A week before I finished a baby quilt for my newest neighbor last July, I finished the quilt top and backing for my mother-in-law from the same fabric. The Home on the Range fabric I initially bought to teach my mother-in-law to quilt. The quilt that has been a thorn in my side since 2022.

I finished (and presented) the baby quilt in no time (but still late for the by-then two-month-old), and then life (and Parkinson's) stress took off again. The sandwiched but unquilted mother-in-law quilt resumed its stressful heart pricking because I hung it on the top of my quilt rack (custom built by Lizard's stepdad not long after we bought our house) to remind myself every day that I needed to finish it. Preferably before my mother-in-law's November birthday to cure my self-inflicted stress and hopefully enable myself to move on to other more enjoyable projects.

Her birthday was Tuesday.

I finished quilting the quilt last Saturday. That's right. In one day. Simple straight-line quilting I had hoped Lizard might be able to do at least a portion of. (He hoped, too. It just didn't happen. We're still hoping he can one day tackle the longarm again... Tremors might actually help his free-motion quilting.)

At 10:38 p.m. Tuesday night, on my mother-in-law's birthday, I finished the binding. Hallelujah!!!

Lizard's mom will be here Tuesday, and Lizard will present her late birthday present in person. She has no idea it's coming. She might be disappointed Lizard wasn't able to do any of the sewing or quilting. But a stack of the Home on the Range fabric remains... Maybe I can piece a pillow, and Lizard can help me stuff it...

Why on earth would I ever put that kind of pressure on myself again??? Oh, yeah, to get rid of the leftovers... :)

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Park It, Son

This isn't the blog post I had planned for today. I had to rearrange the schedule after I finally got to watch "Still", the Michael J. Fox documentary I've been wanting to see for about a couple of years now. My emotions right now are all over the charts.

The language was so bad, I would have turned it off had it not been such an important subject matter for my family. The documentary was so painful to watch, and yet, I needed to see it. I'm glad I watched, and I wish I hadn't watched. Does that make sense?

"You can't pretend you don't have Parkinson's." OUCH. My tears would not stop falling. And I was so friggin' angry at the woman who made me fight 2.5 years for Lizard's disability classification because, in her words, "He can put stamps on letters. He can wear diapers." Oh, just pretend you don't have Parkinson's. No one will notice. Your dignity means nothing.

I feel like I grew up with Michael J. Fox because he is just a couple of years older than me, and although I didn't watch much TV or many movies back then, I feel like Michael J. was in everything I did watch. This documentary made me wish even more I had grown up with Lizard so we could have married 20 years earlier and shared an extra two decades of awesome adventures. I still think we could have had the most awesome cycling kids!

Tracy Pollan Fox is one of my heroes because she has stayed with Michael J. all this time, even when he was in denial and making it worse. She has always been his best friend. 37 years. That helps me know I can make it, too. I can do this.

We can do this. Yes, there are going to be hard days. Hard weeks. Hard years. But we can do this. We will do this, and do it well.

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Back... Back in the Saddle Again!

We've been working hard since March to try to get my sweet Lizard back on his bike. We even got him back into PT in an attempt to regain flexibility and mobility. He has worked harder than ever and refuses to give up. Blessings continue to rain down upon us... my Lizard finally did it Saturday! He's back! He's back in the saddle again! (Hope I planted the Aerosmith song firmly in your ear! 🤩)

This is how you celebrate the best day of the year. (He was thoroughly exhausted. But he did it!!!)

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