I have so many updates I don’t know where to start.
We have seen a slight bit of progression of NCL, but also, some improvements. This disease is the definition of confusion.
- Doug had one mild seizure in the middle of the night two weeks ago. I woke up to it, and it only lasted about 20-30 seconds. When Doug came out of it, he was disoriented but it was also the middle of the night. He went back to sleep and it has not happened since. I do not know if that means Doug will have seizures or not.
- There was a different night that he woke up at 2am and was immediately frantic and was up and down and pacing and circling and up and down and darting here and there and I was unable to calm him. I had no idea what was happening. I took him outside in case he had to go and that seemed to make it worse. There was snow on the ground and he just got more and more disoriented and I had to get a leash to get him back inside. Once inside, I turned the lights on and he seemed to settle a little. That is when I realized, he might not be able to see clearly. He stood there, panicked, tail tucked and I started crying. 3am is not the best time to get a schooled by Neuronal Ceroid Lipafucisinosis. I gave him a sedative, and he was able to fall asleep. The next day he was wobbly but, ok. Thankfully, it has not happened again.
- There are some positives. Doug falls over less when he shakes his head now. This is because he has started adapting to what he is experiencing and has started widening his stance. It is hard to put into words how proud I am of him on this. This little victory, is huge.
- His wild eye movements (there is a vet term but why use that) are not as bad, the neurologist agreed on that.
- He had his first acupuncture session and the days that followed, Doug was like a puppy. Not that he isn’t usually like a puppy, but his movements were more fluid and he was more carefree.
- We had a follow up with the neurologist. We have not seen her since he got diagnosed. I only had one question. What will are we facing? I still don’t know for sure. She said Doug might live with the disease well for a couple years or he could start to decline quickly and not be here come six months. That information was not new. She thought he looked great and she noticed his improvements. Then she said something to the effect of ‘We will have to see what progresses faster, the NCL or his spinal issues.
- Wait, what? Hold up, come again on that last part.
- She said that she had told me last time when we were there that he likely had a brain/spinal (connection?) issue and I thought that was one thing it could be and it was only one thing total so when we got the NCL news, that was the ONE THING. Apparently, she feels he also likely has Cervical Myelopathy. That I can pronounce because that is what Jake had and it’s what made his hind legs give out.
She said the words and I looked at her and said – OK. That’s it, OK.
I don’t have questions about Cervical Myelopathy, I lived it for 3 years with Jake. She may have talked more after that, but Doug and Jake’s mobility started flashing in my head in unison and overlaying them made me realize I had never seen it but it was right there. Doug has the same exact wonky gait and legs that Jake had when he first came here. They literally maneuver the same exact way. How did I miss this? I did worry about how he would face both, but the reality is, he may not live long enough for the CM to impact him as much.
It guts me to write that, but that doesn’t make it less true.
Doug and I had a lovely 3-day weekend. There were a few I-am-human-moments that I said – why him. Why dump on him. This isn’t fair. Why do we get the worst things.
But you know what. We don’t only get the worst things. We pretty much get all of the best things that life has to give too. I can’t scream out WHY US when I also don’t scream out HOLY SHIT WHY DID WE GET SO MUCH TO LOVE.
This life gave me Melvin. That alone negates me personally being able to ask, why me.
And Melvin and I got to love Jake. And that was absolutely meant to be and we were there for him that morning his legs stopped working, exactly where we were supposed to be and yes, life could have gone easier on him, but he couldn’t have been loved any more than he was and I couldn’t be more grateful he was mine.
And then by some great miracle, Doug. A stray, with puncture wounds and two legs growing all wrong, who could have ended up in a backwoods dog fighting ring in SC. But someone decided to get him out of there and send him to DC. And I found him. And he saved me a billion times more than I saved him. He might have died an early death down there. But instead, he now only knows joy and love and food. Melvin taught me how to love unconditionally. Jake taught me how to persevere with joy in my heart. And Doug has taught me to enjoy the ride. And my grateful heart turns those things into beautiful lives full of love for the boys. And yes, we have had a lot of terrible and a lot of heartache, but the amount of joy in our lives is infinite. Doug may have a shorter life than I had hoped, but he doesn’t know that. He thinks he’s been alive forever and life has always been incredible. He doesn’t remember his old life. He has a life where he can pack more nuclear joy into his few years on earth than people who live to be 110 are able to. And in return for him saving me, I will carry the grief. He can just focus on basking in the love. And eating all the food.
All of this is very hard. I still cry a lot. But sometimes I cry because our lives are so beautiful and I’m so thankful for all that we have. We’ve already won this life, ten times over, and we are, as always, committed to joy.
Joy is who we are.
Also, don’t forget, I bought Jakie the large dog stroller, just in case, and now we have a just in case and can you even imagine how adorable Doug will be with his head sticking out of the top and all his sister wives riding shotgun?!
We love y’all
Thank you!! xoxo
So much love 💕 ❤️💕
Love you guys! Xoxo
Love you! xoxo
Love you guys! You are an inspiration.
I love the mental image of him being wheeled along in his chariot! I’m so glad you can enjoy him still.
I love that we have a plan! ❤️❤️❤️
He will be impossibly adorable riding that stroller like a boss. It’s hard to smile reading about this disease, but then there’s the picture of him in his hippo jammie and it’s hard NOT to smile and giggle and fall off my chair laughing. What a guy. What a mom!
We are right there with you in all of it! I know hard days are coming, but today is really beautiful and I don’t want to miss out on right now! 💙💙💙
You really are amazing Tracey. Thank you for putting into words how the hard and great parts of life don’t exist exclusively, but simultaneously, what amazes me is your ability to recognize that during this crisis. I think you should write a book about your life with all of your pets…bestseller! As a practicing ICU nurse I see people get devastating news all the time. You have the unique ability to see the great and the heartbreaking, acknowledge the worst, revel in the joy, and then share that with us. Thank you for this perspective.
You just made my whole year. Thank you! ❤️ When I had the PE event where countless blood clots flooded my lungs and my family came to say goodbye, my life played over in my head and I kept coming to the same conclusion: even if it ends here, it was glorious. And I promised myself if I lived, I would continue down the same path and always see joy, even when it gets dark. You will appreciate that in the ER I asked for paper and pen so I could give instructions for my dog Max’s life and what I wanted for him. Melvin came into my life just after that, as a result of living. ❤️
Love to you and Doug in this joyful part of your life. I can just see his head poking out of the top. Made me giggle! Life really is what we make it and you make yours and Doug’s amazing. Good for you, so many people forget it’s not one or the other but ALL of it.