Love, perseverance and nuclear joy.

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.

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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.

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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?!

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xoxo,

t&d

 

Grateful Hearts.

I am so thankful for each and every one of you. Each time I have come here to celebrate the boys, you have cheered us on. Every time I have come here broken hearted, you have lifted us up.

To each of you that has commented, messaged, called, texted, and sent goodies. Thank you! You all have reached out to your vets and your rescue communities to try and help us and I am forever grateful. And thank you for raising the most wonderful minis!

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The Christmas after Melvin died I was going through the decorations and I had a bunch of stockings with his name on them. I vowed to never do stockings again so that I wouldn’t have to have a void where his should be. When Jake died and Doug came and Christmas followed, I felt fine about my decision. We are living proof that Christmas still occurs even if you don’t have stockings. But this year, with Doug’s health improving and Bob being here, I leapt into faith and got them matching stockings with their names on them. As I was undecorating this week, and it came to those stockings, there was a painful pause. I put them in the box and I prayed that my future self would be able to handle opening that box next year if Doug isn’t here.

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Doug’s disease was always going to be. In the same way he and I were written in the stars, so was this diagnosis. Doug and I are not the sum of what is coming. We are the sum of every second of every minute of every day that we have had. We were sent to each other, so neither of us would be alone. Don’t forget, he came to me during the darkest days of grief. I owe him a debt of love that is infinite.

In the time since Jake died, I have given a lot of thought to adopting another special needs dog. To be honest, up to now, I didn’t think I could do it again. Not so much the taking care of (that’s just love), but the void that is left when a special needs dog dies. There are still nights that I wake up to help Jake. I’m not sure when that will stop.

Turns out, Doug is that dog. And all of me is 100% ready and 100% terrified and 100% armed with joy and 100% heartbroken. All of those things can absolutely exist at once.

We had arranged to buy another cart for a Frenchie in Jake’s rescue. We were just waiting on them to place the order and give us the amount. The invoice came the evening I found out about Doug’s genetic test. Paying that bill, still brought joy. And Doug and I celebrated that a little frog dog named Dorey was about to start a beautiful new chapter. Sometimes, in darker moments, you have to be or see the joy in someone else’s life.

I am happy to report there have been no changes in Doug’s symptoms over the past two weeks! We have started seeing a new rehab specialist who wants to teach Doug how to live in an unbalanced world before the NCL hits him harder. And that means, we are back in rehab with his girlfriends! I am also setting up acupuncture and a nutritionist.  We have found one Am Staff that went through this, and our vets are working to learn all they can from that case.

Harem, check. Treats, check! IMG_9182

My wiggly warrior.

Zonked on the way home.

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Happy New Year!

xoxo

t&d