Today we had an incredibly caring and honest appointment. The head of the neurology practice, met with Doug and I. We discussed the realities of NCL. We chatted about how there was nothing he or I could do to stop what’s coming. He helped me understand what Doug is going through. He reminded me, that Doug has been battling this illness since the day he was born. Long before I noticed symptoms. It’s why he’s so good at compensating. I’m not sure that made me feel better. He told me what was coming. 💔 He asked me what I thought his end would be, the things that would make me decide to let Doug go. I have thought about those things, since the day he was diagnosed. I tearfully shared them with him. He told me how long he thought Doug had before we were to that point. Then he asked me what I thought, and I told him I had come into this appointment, fearing the same. When I got Doug I thought he would be with me the longest. I thought I’d finally get to see a dog of mine grow old. I‘ve known for a while now, that wasn’t going to be. But what Doug and I did get, was more time knowing our reality. More time knowing, that our time would be shorter. I only got 40 days with Melvin, something I will never forgive this life for. I was told Jake and I had six months, we got about five. Doug is probably looking at nine months to a year. I’m not shocked. But I am obviously heartbroken. I have to work on seeing this as a gift, even if most of me wants to scream and hide from it. I GET to know. I GET to plan. Doug and I get, many more ‘one more’ moments than others have gotten. Many more than I got with Melvin. And Jake. I promise to celebrate him, not mourn him while he’s still here. Most of all, every day I will cherish the greatest blessing of all. I get to love him. Me. I get to love and adore this beautiful, majestic creature. This mystical hippopotamus. And we don’t have to change a thing to make sure he has the very best life. He is already there. We have already won. #ilovehim #loveliveson❤️#earlyphotoofus
Doug and I are six. Six years ago, I said the hell with “too soon” and adopted Doug. It was just six weeks after losing Jake. I went against the very fabric of who I am - I made no pro/con list, I did no shopping before he came. I didn’t panic on the way there, or on the way home, or the next morning. There were no dogs here, and that had to change. Doug and I were desperately in need of the same thing - a family. That night, Doug ate out of Melvin’s bowls (still does) and slept in Jake’s bed (no longer does because he destroyed them all). I moved from crying over Jake, to crying over Doug mouthing my feet. We (listen I suffered as much as he did) had two extensive leg surgeries in year one. We dealt with his bodies protein aversion (he’s a vegetarian now), and we are traveling through NCL the only way we know how, together and with love in our hearts. Three months after his diagnosis, the world shut down. I have been home with him for two and half years. I will always look back on this time with him, as one of the greatest blessings of my life. Doug, I love you a billion lifetimes. I promise to be by your side through whatever is coming. I promise meals will be on time, love will be unconditional, and comfort and safety will always be yours. I promised you on day one that your life would be measured in joy, on that I will never waiver. You have my heart, and you have the watchful eyes (all three of them 👀 & 👁 ) of your brothers. I ask them every night to lookout for you. Happy six years my sweet boy. I love you. ❤️ #ilovehim #loveliveson❤️ #amstaff #englishbulldog #americanbully #americanpitbullterrier #neuronal_ceroid_lipofuscinosis #pitbullsofinstagram
Many of you are familiar with Doug’s condo. He’s been having a hard time getting in and out of it, so I wanted to get it moved downstairs until we could figure out what to do. It’s just not safe for him anymore. Someone stopped by to help move it today but it was too big to go down the steps. So we sort of quickly decided to put it in the family storage unit. After carrying it out, as I was walking inside, I realized that something Doug loves dearly was just removed from the house sort of suddenly. It was just one of those moments where, when it didn’t fit, the storage idea felt like a good plan B. But I didn’t think it through. In addition to Doug not knowing where it went 💔, I realized it probably won’t make it back here in his lifetime. I had only thought through it being in the basement. I had one of the heaviest breakdowns I’ve had since we found out about the NCL. I haven’t been able to stop crying. I’m so heartbroken that my six year old dog can’t maneuver into his beloved condo anymore. I’m so angry that this is happening to him. In these moments when I have to make decisions about his safety, to him it probably feels like punishment. It’s just a low moment that I know will pass. But since I don’t share them very often, I thought I’d remind everyone that joy is not all day, everyday. Some days are really hard. And we just do our best to get through. #neuronal_ceroid_lipofuscinosis #ilovehim #loveliveson❤️
When Melvin and Jake were diagnosed with their cancers, there was a lot the veterinary community could tell us about what would happen. What the struggles would be, and for the most part what the end would look like. I was told Melvin could die at any moment (he lived 40 days) and that Jake had 3-6 months (he lived 5). I don’t know if knowing exactly what is coming is better or worse than knowing something is coming but no idea of what. In two and a half years, we have found three other dogs with NCL. Three other dog parents that know exactly the same thing. Nothing. We watch each other’s dogs progress at different rates. We strategize on solutions in a struggle to have some sort of control over this disease that has no guide. A disease where dizziness, might be the reason we have to say goodbye. There is zero rhyme or reason to why one dog progresses faster than another or why their symptoms are so wildly different. The only beautiful part, is the love we have for our dogs, and the love we now have for each other’s dogs. Three of us were diagnosed around the same time. One, has reached her end. Sweet Stella (swipe for photo) will be the first in our little family of four to cross over the rainbow bridge. Her mama, Jenn, has been such a lifeline for me. I can’t speak for all of us, but even though the vets tell us they will die, we have no one who’s been through it to ask when. So I sorta just pretended it might not be that way. Maybe we four would change the game somehow. Reality is a throat punch sometimes. So now we lift up Jenn and Stella and their family and let them know that they could not have done this journey more beautifully. Every day Stella had this disease, Jenn and her husband just loved her more. A beautiful love story, with a tragic end. I know when Doug’s time comes, they will be there for us. If you have time, hop over to @jennbuchin and give them some love as they prepare to say goodbye this week. And to Stella, while we are so sorry you had to face down this disease, we are happy that you had so much love to guide you through. Run free without the dizzy sweet girl. ❤️#nclfamily
The number one question I get is, “how is Doug doing”? My answer is almost always a question: good? With all of Melvin and Jake’s diseases, there were list of symptoms, we knew exactly what to expect. The only thing I know to expect for NCL is, the unknown. There are dogs with NCL that don’t make it to six months old. There are dogs who once diagnosed, deteriorate quickly. There are dogs that were diagnosed the same time as Doug, who have fewer issues, and some who have more. There is no guarantee that Doug’s issues will be the the same as any of theirs. Doug has far more good days than bad days. On his bad days, we don’t know if it’s progression or just a bad day. It’s turning out to be a mix. Bad days look like confusion. He falls over when he does a normal dog shake, he needs help with even the couch steps, he’s nauseous (so the vertigo is likely also worse), and he seems a little lost emotionally. On the good days he’s dizzy, but he’s acclimated to it. They aren’t the good days from a few years ago, but that’s ok. We all age. But…I can tell you with absolute certainty, that joy outweighs NCL by a country mile. In the same way Melvin and Jake’s lives were measured in joy, not years, so will Doug’s be. I don’t get to control very much with NCL (which is pure torture), but Doug and I choose and control all the good this life has in store for us. I find it very odd that I love old dogs so much, and yet the universe will not give me my dog’s golden years (Melvin was 10, Jake was 8). My hope is that Doug is the one that gets to grow the oldest. I believe together, he can. 💙 #loveliveson❤️ #ncl #neuronalceroidlipofuscinosis #americanbully #amstaff #englishbulldog #americanpitbullterrier #ilovehim❤️
