I really enjoyed the holidays this year. Watching my mom decorate nonstop was entertaining, how she stores all these decorations blows my mind. The family room turns into the Angel room, and the living room turns into the Santa room. Too many to count, but if it makes her happy then I’m happy.
Not talking this year has made me become very observant of people and my surroundings. Thanksgiving was just the family this year, and I got to listen to the family talk. It’s kind of nice not joining in the crazy conversations anymore, I just listen and smile. I ate some turkey, mashed potatoes and all the fixings. My taste buds are weird, I think because I can’t smell with the trache. I liked the mashed potatoes the best.
Christmas shopping was easy this year, I got all the adults shoes. The kids got cash to do whatever they want, and I made photo books for my family from Google photos. Totally awesome gifts, they all got teary eyed. Ashton made a list of things he wanted, I picked airpods and let his mom buy the rest. Watching everyone together opening presents made me so happy. Just seeing the joy on everyone’s face made me smile.
Christmas eve we had our traditional open house gathering with all the neighbors. Appetizers, sandwiches and lots of booze. Again, I enjoyed listening to everyone’s conversation and jumped in when I had the opportunity. I maybe had half a glass of wine, and just ate some fruit. I stayed up late, maybe till 10:30 in the chair that night just because everyone was having so much fun. The caregivers had the night off so my siblings and mom put me to bed.
For whatever reason this year was my favorite i can recall. Just having everyone together, happy and not arguing constantly is honestly the best. Sitting by the fire, football on tv, the family all hanging out and the dogs playing together while presents were opened really did it for me. I was truly happy. I love this life, it’s worth fighting for.
Merry Christmas and happy new years to everyone!
One thing I absolutely love to do is go out somewhere, whether it be a restaurant, movies, shopping or the beach. But for an ALS patient who is dependent on a ventilator things can be tricky. Let me tell you about what I require when I go somewhere.
First and most important i need someone who is trained to suction and provide cough assist for me at a minimum. I need a suction machine, and cough assist machine and obviously a ventilator. I have a new type of ventilator called a VOCSN which has suction and cough assist built in making it easier for the caregivers, less shit to carry around. Then I have my travel backpack which has a ton of stuff. I will list just the important stuff :
You also need a specialized vehicle that will accommodate my chair. I have a dodge caravan with a $20,000+ conversion kit to fit my extremely tall self. Ridiculous right? They chop the floor and drop it enough to fit my giant self, install a motorized ramp and add a body kit so it still looks cool. When inside my chair is strapped to the floor so I don’t bounce around like a pinball. Then wherever we go pray there is handicapped parking that has space for my ramp to deploy.
I also take a 60000mah powerbank that will keep my eyegaze computer charged, and power my electric blanket if it’s cold.
I think that’s all I need. I have ramps in the van too if we need. Sounds like alot right? Well it is, and I always travel with two people, caregiver in the back in case something happens while we are driving.
It’s all worth it, I just want to keep living! It’s much easier having visitors at my house. Seeing friends and family absolutely brightens my day. If you have reservations about visiting me, throw them out. Come have a beer or glass of wine with me, please!
Two weekends ago, Ashton got to attend Hope Loves Company's camp up in northern California, specifically Boulder Creek. Jodi O’Donnell Ames started this nonprofit after she lost her husband to ALS. She saw firsthand the impact ALS had on their children and wanted to create something that specifically supports all children affected by ALS. Her idea has grown into a wonderful nonprofit providing an outlet for the kids.
They put on annual camps around the nation that are the most beneficial to Ashton. I asked him to journal this time about his experience, below is his summary and thoughts...
"Today, I flew with my cousin Allie and Auntie Analise and we flew to San Francisco and we went to camp. We got there early so I played tether ball with the other kids that were there. We then had dinner and after dinner, we did shoutouts to everyone. We then went to a camp fire to roast marshmallows and had so much fun.
My family is so thankful for what these wonderful people do. I am so happy that Ashton is able to experience these camps. For more information on Hope Loves Company, to donate or to inquire on getting involved, go to www.hopelovescompany.org