The Year That Was
It’s been a while… I won’t start by explaining my absence. It’s just the way life goes.
But since Steve is wrapping up race season, and some folks may actually visit Lola’s blog, I should maybe dust it off and update.
Lola had an amazing year at her new school. It’s like they just “get” her there. Not that she wasn’t loved at her old school, but this one has everything she needs. It has amazing staff, all the room to run that she needs, a fantastic facility , equipment, etc. and let’s not forget a POOL! She started back to school last week, and she’s been so happy to hop on the bus everyday. The bus is still her favourite thing…ever. She loves to point out school buses when we’re out and about. We even go to my school to visit the bus (which gets a chuckle out of one of our friends who has to drive the cheese wagon all over town carting around his phys. ed students). She’s in a new classroom this year, and many of the students are working on their communication skills, which is a perfect fit for Miss Lola. Even though she has quite a long bus ride, it’s totally worth it (and hey, she likes to point out everything along the way anyway, so it’s not a big deal). We also have a new bus driver this year – his name’s Mike. All in all we’re very happy to have Lola back in school – it’s pretty boring for her at home.
Our summer started off with a trip to Sarnia. We hadn’t been home for four years prior to this trip. To say that I was dreading the flight was an understatement. Lola doesn’t like to be contained at the best of times. To strap her in for a four hour flight is pure insanity. Even with the meds her neurologist prescribed to knock her out (they didn’t work – just made her kind of sleepy and extremely irritable). Liam was amazing and helped out when he could. He also got frustrated because after several hours of shushing and placating, it got old. On the way back, we paid for the upgrade to the bulkhead, which also came with free food – Liam snuck into the seat beside me (which I didn’t pay for) and managed to not get kicked out of it. The kid was in heaven. Lola…notsomuch. I tried everything…food, ipad, singing, essential oils, gravol, more food, diet coke, chocolate milk, you name it. There were times when I was basically lying across her on the floor of the bulkhead. I was sweating in places I didn’t know I had. But we finally landed. While we were waiting to deplane, several of the people seated around us (who I had trouble making eye contact with due to Lola’s histrionics on the flight…) took the time to tell me and Liam how well we did with Lola. They were so kind and sweet – not at all patronizing or pitying. I welled up as I thanked them. It was so unexpected and heart-felt – and just what I needed to hear. It was a really tough thing to fly with Lola. I wish the flight was an hour long, because she did love parts of it, and did great on the take off. It was the being strapped down part that sucked for her – I totally get it. Anyway, I’m proud of both of the kids – Liam took one on the chin and so did Lola. He sure appreciated the pats on the back he received from the kind strangers around us. “You’re such a good brother.” He sure is.
Sarnia hasn’t changed much in four years, which is pretty awesome. It was great to go to the same spots as we always had – fries under the bridge, shopping in Port Huron, ice cream at Ice Cream Galore, wings at Scroggy’s (actually wings pretty much anywhere). We stayed at my sister’s and were entertained by the Lippers for two weeks. Liam was lucky enough to get to go to Camp Olympia again with Grama and Grampa – as well as meet up with many of his cousins and aunts and uncles. He is truly in his element at camp. He did soccer, and has improved so much since last year. While Liam was at camp, Lola and I hung out with Aunt Pubba and took many van rides to Tim Horton’s, the park, out to Bright’s Grove, etc. Uncle Lipper, Jarebear and Zac all took turns babysitting Lola – what a good bunch of boys. They love Lola with all their might – their eyes light up when they see her, and they rush home from work to see her. It was so sweet. Lola would sit on top of Jared in the mornings, playing her iPad and sticking her finger in his eye. He would just tolerate it, talk to her sweetly, and hang out with her. Zac showed us his fairly new tattoo – “And though she be but little, she is fierce” which he got to honour Lola. What an awesome kid. It was so amazing to see them interact with both the kids – I miss them so much. We also got to spend lots of time with Kate and Jackson (my niece and great-nephew, who is almost one) and hang out at the pool. It was great to have time to just hang out and chat while the kids splashed around in the pool (which makes it sound like we were chilling in lawnchairs while they swam, which didn’t happen). My sister and Seth hosted a party for Lola’s birthday, and we got to see Aunt Cindy, Dara, Joel, Aunt Faye and Uncle Daryl, Kristin, Kelsie, Chrissy, Trev, Kate, Kurt, Jackson, Bryan, Lani, Meghan, Jacob, Dina, Dave, Anne, Judy, Mom and Barry….and now I know I’m forgetting someone! God bless whatshisname. Anyway, I thought Lola would freak out with all the people there, but she did okay. At one point she came outside to sit in “her” gazebo, but it was filled with people. She kind of lost it then….but other than that she did great!
Once we got back from Sarnia, we were back into full on soccer mode for Liam. He missed two games while we were away, but his team managed to finish third overall, which is awesome. He went to Provincials (which Grama and Grampa flew out to see), and battled hard in some pretty tough games. It was quite an experience. Now he has two weeks off and then he starts his fall season – four weeks of outdoor, then it’ll be Indoor season again. Man, I love being a soccer mom. It’s a blast. Being a goalie mom, however, is fairly stressful.
This weekend is the last of Steve’s races in the Dunbar Summer Series – Fernie BC Cup Finals. He has had some amazing events, and it’ll be nice to end the season on a high note. Let’s hope the registrations keep rolling in! What’ll he do with his free time when the race is over? Oh right – start planning for next year. So far this year, the races have provided funds for Lola to have a new iPad (her first ipad just died – it was a gen 1 – and it was six years old), a new monitoring system for her room (it’s called a “Nest” – and has such a clear picture – much better than the pixillated baby monitor we were using), a new bed, and a new paint job on her room. What a lucky girl! All thanks to Team Lola!
The rest of the summer was fairly boring….car rides, sprinkler parks, playing in the backyard. I tried taking the kids to a pool with waterslides, etc. but getting Lola in and out of big places like that is really difficult. She has gained quite a bit of weight in the past several months (due to med changes), and is tough to manage at the best of times. When she doesn’t want to get out of a pool, it’s tough to make her. She’s writhing, slippery, and a big girl. I would love to get her to the pool more, but the screaming wrestling matches aren’t fun.
Seizure-wise, we are doing a bit of a shell game. We have removed Valproic Acid, which she’s been on for years (maybe five or so years), and added Zonisamide, which is not available in Canada. We are accessing it through the US and a program through Health Canada. So far she seems to be doing okay with the switch – with some good and bad days thrown in. We’ve also been doing lots of research on CBD Oil and MMJ, which is helping many children (and adults) with their epilepsy. Always in the back of our minds…
Okay, consider yourself updated! That’s the excitement around here.