The time between diagnosis to the time B was admitted to the hospital for the last time was the fastest and the slowest all at the same time. Every day was the same basically. I lived by the sheets in B’s binder, never straying from the timeline that I had set out and deemed best for B. Life was overwhelming. I tried my best to stay strong, but with every day it was becoming harder. He was having 100s of seizures a day. B wasn’t sleeping much at night. I don’t know exactly what was happening to B, but he would just lay in his bed and scream for hours. There was nothing I could do to console him. I would just lay beside him and go somewhere else in my head, hoping that my even breathing and presence would help him calm down. Sometimes it would, sometimes it wouldn’t. I remember a night where I woke from a dead sleep because I could tell B was seizing. I ran into his room to find blood gurgling out of his mouth while he was seizing. I’m not sure exactly where he was bleeding from, his nose maybe, But there was so much blood, I ran over to him and rolled him onto his side, trying to clear his mouth of the blood so he could breath, finally the seizure stopped and I was able to open his airway more, I was beside his bed covered in blood and Eric walked in. He looked at me and he asked “mom, b dead?” and my heart broke. What 2-year-old should jump to that conclusion? And the worst part is that the answer could have possibly been yes! Its moments like those that kicked me in the stomach. Made me realize what was happening and that it wasn’t a bad dream. It was real. So many traumatizing moments like that happened. It was so hard to handle, and on top of everything that was happening with B I also had a 2-year-old that needed me, and a marriage that was non-existent. I couldn’t do it anymore. I wouldn’t and I couldn’t give up on B or E, but I could give up on my marriage, so I did. I made the conscious decision to do the rest on my own.

Battens Disease is ruthless. It takes everything from a person, more than I would have thought. But it couldn’t take the B I knew away. He handled this disease with such grace and positivity. He never expressed any complaints about any of the equipment he was forced to wear or use. Helmets, sunglasses, walkers, wheelchairs, hospital beds. He behaved perfectly for every EEG and CT scan, every hospital stay and surgery, all the times being poked and prodded he always had a smile. He loved the nurses and the doctors. Especially the Rotary Flames House nurses. Though B had been referred to the Rotary flames house right when he was diagnosed, I had not used it very often. Once I was separated, I used the Rotary Flames house almost once a month. I had 30 days a year that B could stay at the Rotary Flames house for respite. I would bring B into the house 1 weekend a month, just so I could have a break. It was very nerve wracking at first. I didn’t leave B with anyone besides my mom, so to leave him in the city was very tough. The first few stays I stayed with him at the house. It was weird. I didn’t know what to do, the nurses and aids would tell me to go have a nap, or just go relax. I didn’t know how to do that. Once I realized that B was so well taken care of there, I started using the weekends to have a normal life, I would plan stays around volleyball tournaments, curling bonspiels, baseball tournaments and camping with family. I loved that I could call in every morning and every night to check in on B. It gave me a chance to breathe. It gave me a chance to spend time with Eric without any distractions. It just gave me some time for me. There were so many opportunities given to us through the house. I was able to take B swimming in the ACH pool and he loved it. They took him for walks to the duck pond, they would get the mats out on the floor for him to play, they would sit and snuggle with him while he watched his shows. They treated him so well there. I was always so excited to go and pick him up and the hear about the fun that he got to have. I loved the fact that no matter what there was a doctor close by if anything happened, and that the hospital was across the street. The breaks that the rotary flames house gave me helped so much. The Doctors and nurses at The Rotary Flames house showed me that I wasn’t alone, and I didn’t have to be numb to get through.

We were so fortunate to get to spend B’s 5th and 6th Birthdays at home. We got to spend Christmases together with family and watching B’s all-time favorite shows like the Polar Express and The Year Without a Santa Claus. We had to go to the mall to see “oh ho” (Santa). We spent the summers going for walks, sitting out in the shade, but mostly we just sat together holding hands. I was fortunate that my Mom came every day to help with the boys, as I didn’t trust anyone but her. And my dad would come over every night for supper and to see the boys. I am so thankful for the quality time we all got to spend together. The last year was truly quality time with B. I had another support come into my life that I was not expecting. Jordan and I had met at a ball tournament and a friendship turned into a relationship. A relationship I am thankful for everyday. Every chance he got he came to help. He would get after me for not asking for help. He would help maneuver B into his wheelchair, he would take Eric and go play so I could have a nap. He wasn’t scared of B or the situation and because of that we were able to make more memories with B. We took him down to the river, B got to relax listening to the water as Eric and Jordan tried to skip rocks. We were able to take the boys to the mountains for a weekend. Memories that I will always treasure. 

It’s weird to say but Brady’s last year wasn’t as bad as I thought it would be. It was pretty relaxed. The disease had already taken all the major abilities away from him. He couldn’t walk, talk or see anymore really. He couldn’t eat, He was starting to sleep more during the day. The progression of the disease that we could see was small things. He had developed dystonia, which is a muscle disorder that caused his to arch his back and was very uncomfortable. He was on oxygen full time and had to be monitored as his oxygen levels would drop at night. His body couldn’t regulate his heart rate anymore.  He was on massive amounts of medication. His seizures had reduced to mostly myoclonic jerk seizures, although he had thousands a day. His last MRI showed his brain mass had decreased by 20%. He still enjoyed listening to his shows, and if you were lucky enough you could even get a giggle out of him. I lived for those moments. Videoing them as often as I could. Mom and I would take turns sitting with him on the couch. Eric would sit beside B and hold his hand. I would lay with him every night until he fell asleep. Its those moments, the quiet moments that I cherish.

I’m not sure if I was just desensitized and that’s why it seemed more relaxed. There were still emergencies. Once on our way to IVIG on Stoney Trail, which is one of the busier roads in Calgary I looked in the rear-view mirror to check on B, only to find him having a seizure. I am not sure how long he had been seizing for as I was paying attention to driving, but when I looked back his face was purple. He wasn’t getting any oxygen. I pulled the van over and jumped into the back as cars raced by going 110 km/hr. I turned B’s oxygen up, gave his rescue medication and waited for the seizure to be over. I sat in the van alone with B and contemplated what do to. Do I call an ambulance? If I did by the time they got here B would either be out of the seizure and recovering, which I could handle……or he would be gone, which is something that paramedics couldn’t help with either. So, I waited it out. B came out of the seizure, projectile vomiting all over himself, the van and me. Once he was able to catch his breath and his color returned, I cleaned him up as good as I could. This was not the first time a seizure like this happened on the road, so I had paper towel, garbage bags and disinfectant wipes to clean up the mess. I got back in the driver’s seat and we carried on with our day, heading to the hospital for IVIG.

IVIG days were LONG days. Once every 3 weeks I would get up at 5 am and get myself ready. Then I would prepare 3 feeds, B’s morning medications, pack up the rest of his medications he needed for the day and his flushes. I had to make sure I had diapers, wipes, a change of clothes, and a fully charged iPad. A full tank of oxygen was strapped to B’s wheelchair, and his oxygen monitor as well. Then I would wake him up, give him his first meds, change his diaper, get him dressed and into his wheelchair. Wrapping him up with his favorite mickey mouse blanket we were finally ready to go. Then I would strap him into the van, load up his bags and we would be out the door around 6:45. Then at 7:00 am I would have to pull over and start B’s first feed of the day. Back on the road we would go, until 7:30 when I would have to pull over again to finish B’s feed and give him a flush. We would get to the hospital at around 8:25. I would pack all of B’s bags onto a clip on his wheelchair and head on up to medical day treatment on the 3rd floor. We would stop at the scale, take all his bags and oxygen off so I could just weigh him in his chair, put it in my phone and then load it all back on again. Once at medical day treatment the nurses would help me get him onto a bed, I would change him get him set up listening to one of his shows while they started the treatment. Over the course of the next 4 hours B would need 6 medications, 2 flushes and a feed. As well as at least 2 diaper changes as the IVIG also had fluid with it. Then once it was finished the nurses would help me get him into his wheelchair again, bags loaded again, and we were on our way. I would load B up in the van, make it to the Starbucks in Airdrie (about 25 mins away) and I would get a coffee (which was needed to drive home) give B another medication and flush and start out on the road again. One more stop on the side of the road at 2:30 to start B’s feed. Getting home at about 3:00 pm, just in time to finish B’s feed, and then we would carry on with our day. For 2 and a half years we did that routine. Of course, when we started going it wasn’t as bad, not near as many medications or as much equipment. I did look forward to going to IVIG. I had gotten to know the nurses well, looked forward to getting to visit with them. It was at IVIG that I could also get in touch with the doctors I needed. If B had troubles with his feeding tube I would call the day before to the home nutrition nurse and she would come and see us at medical day treatment. Once I was worried about B because his one eye stopped working, it just crossed all the time, So the nurses at IVIG called his Neurologist and he was up within the hour and had B in for an MRI that afternoon. If I was concerned about B in any way the palliative doctors would come and assess him, deciding if medications needed to be introduced or increased, or even if he needed to be admitted. And at B’s last IVIG appointment, that’s exactly what happened.