Big Valley Jamboree (BVJ) is every August Long Weekend, it is a country music festival held in my home town. It is held by the CRE and it brings a whole bunch of different country stars. Every evening we went to the Casino for supper, there were a group of people from the Camrose Association who went to supper together.  We had a weekend pass so we could go every night. They had us sitting on a deck which was nice for my chair. It was pretty easy to get to our seats with my chair, because of the ramp and the deck- there were no stairs. On Friday we got there at around 7 and were able to see Thomas Rhett and Paul Brandt. It was super busy!

Saturday, we saw Alabama and Dallas Smith, every day we got to the BVJ grounds around 730, before we went we just hung out at home. It was raining pretty much all day Saturday but lucky for us it only rained in between the shows that we saw, so we didn’t miss anyone! There was a pretty good looking guy working security that night, so that was fun.

Sunday, we saw Florida Georgia Line and Brett Eldredge, this was our favorite night! Florida Georgia Line was incredible and the fireworks were amazing. We had fireworks every night but on Sunday they set the stage on fire as a stunt. Darby and I danced a lot that night, down where they were playing.

Because of BVJ I didn’t go home on Sunday, so I was excited to go home on Monday. I got to go in my mom and dads pool and float around. My dad and mom had to lift me into the pool, it is a 2 person life, someone has to hold the floater and then the other person has to lift me or else it isn’t safe.

 

All together it was a busy weekend, but really fun!

On July 21st, I went to the Kray Family farm with Roseclub. First when we got there we had lunch and me and Nancy walked around a bit and found a car covered in chalk paint that you could write on. So Nancy had the idea to write my blog name on it and take a picture.

 

We went walking around the place and we did some activities. I had never done these before  when I just go in the corn maze, so this was nice. First we went on a little train, Nancy and Karen, from team 2, were able to help me so that I was able to go on it, because my chair wouldn’t have fit.

 

Then I go to try something really neat, we went to try a pumpkin/corn cannon, it wasn’t really a cannon it was more of a gun, and I figured out I could do it on my own.

This was my favorite part. It started to rain that day, so we didn’t stay out all day, we stayed just long enough to see the pig race. I would go again, even though I had to take my other chair because it was bumpy, but I was still able to have lots of fun.

 

On July 22, a Sunday,  me and my mom decided to make cookies. We have made cookies before, when I lived at home, but this time I did more of the work myself! I have always been able to help, by putting the ingredients and then using the mixer, but this time I even scooped all the cookies onto the sheet pan.

Then this past Saturday, in the evening, my mom texted me that I  could go home, because my grandpa was in town. My grandpa lives in Ontario, but he drove down here. My brothers and their girlfriends were there too. We had a family supper and hung out on the patio. It has been a year since I have seen him, he usually comes every summer.

This past week I have had a cold, a bad cold,  I had a sore throat, my nose ran, everything. It made me think how different it is when I am sick verses other people, because I cant have halls candies or cough medicine. I cough but there is nothing anyone can do to make it better.

I had to have ice cream cake instead of halls since it melts and puts me less at risk for aspirating. Aspiration is kind of like when food goes down the wrong way, because for me it goes in my lungs. For me, aspiration is caused because I have a hard time swallowing, this is popular in people with Cerebral Palsy. Aspirating can be very dangerous because it is a cause of pneumonia.

I began getting tube fed in grade 8 but I was still eating meals as well, but I really wanted just the tube.  I remember having macaroni with soup and cheese on top everyday, this was something that was easy to eat and didn’t cause me to aspirate as bad. Everyday after school I would have thickened chocolate milk, it tasted awful but we had to thicken it so it would be easier to eat and be safer for me. I remember bawling my eyes out at supper because it was frustrating trying to eat before the tube and I wanted to just use the tube. So in grade 8 I got my feeding tube, I had to go to Edmonton Stollery Children’s

Hospital, I got a long one first for a bit but then it was switched to a shorter one. Nw it is like a balloon in my stomach. When I first got my tube, I began getting abdominal migraines, and I would throw up everyday. Abdominal migraines, are not headaches, they are stomach pains that are caused by the same triggers as migraines. It took 3 years for them to figure out what was wrong and why I was having such a hard time!

Did you know that between 150 000 and 300 000 adults in Canada have long term feeding tubes? Mine has been in for 8 years. I eat every 3 hours. Up to 3 times a week I can have a treat that I eat through my mouth, my favourite is blueberry cheesecake. The reason I have the feeding tube is so that I don’t aspirate as much. A positive of the tube is that I am healthier and I am not losing weight. The negative of having a feeding tube is not being able to eat what I want and I have to be careful of what I eat and to eat slowly when I do have my treats. If I eat a treat that day I find I cough more while I am sleeping, and it can be uncomfortable and not safe for me. Having my feeding tube is the best decision I have ever made for myself, I know it sounds weird, but I am so glad I did it, because eating was so frustrating.

This week has been pretty busy! On Friday I went neon bowling with Rose Club and my staff Melissa helped me. We use a ramp to hold the ball and I am able to push it down. Melissa is able to move the ramp around so that the ball ends up where I want it too. Because it was neon bowling I wore a tie die shirt that I made with Rose club last year, it glowed under the coloured lights. 

 

 

 

Saturday my grade 1 teacher Ms. Cherniak and her mom came to Camrose, they live in Wetaskiwin. They brought me presents! I got lots of bath bombs, and some coconut lotion and shower gel, a new outfit and lots of earrings. I made Ms. Cherniak a pillowcase with flowers on it that I crosstitched because it was her birthday too in May.

Saturday night my room mates and I watched a movie called Kissing Booth which is on Netflix, it was very funny! I would recommend that people watch it, my room mates liked it too. I sat in a light brown chair with my red pillow and my Justin Bieber blanket. I have gotten to see Justin Bieber live in Edmonton way back in 2012 it was pretty cool.

I live super close to a Canada Day Celebration. My dad took me to the celebration on Sunday. We got there in time for cake, I got to eat chocolate cake. Then I got my face painted with a butterfly, but it was a very long wait because it was so busy. We were lucky because the celebrations were so close that we did not have to drive, we were able to walk back and forth which was lucky because there was not a good enough bathroom, out houses do not work for me. I had to go back to the house for my feed, but we went back to the party after. I got a tattoo of a rose, they are my favorite flower because it is my birthday flower and it is the symbol of our city too! There were bands playing so we were able to see those, a few of the ones who preformed were ‘Big Smoke Revival,’ ‘Dextress,’ and ‘Sawbones.’ After the bands were done playing, my dad and I went back to my house and watched the fireworks, we had some friends over and everybody watched the fireworks in the driveway!

I have been busy with Roseclub and look to be even busier this month. We are going neon bowling next week and to Kray Farms in Lacombe the following week. I am forward to them but I have to take my unpowered wheel chair because it is hard to get around in my normal one. There are too many bumbs and when we go to a bowling alley there is a ramp that I cannot get over because my chair is too heavy.  I cant wait to show you guys my next few adventures and what it is like for me to go to these places, it might show you what it is like for me and how I overcome these obstacles.

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My Birthday was June 7th, On June 6th, I went to Red Deer for the ‘Self Advocacy’ conference. When we got to the hotel, we couldn’t find any parking, we had to drive around a lot. We need a lot of room for my ramp, and none of the accessible spaces had the space. I was excited to attend the conference, but this was frustrating. When we finally got parked, we went in and checked in, our room was pretty good. The conference started out with Zumba, I really enjoy dancing so I went up to the front and had fun. At the conference they gave us all nametags and on the nametag we had to write something that other people should ask us about, mine said “Ask me about my Birthday.”

The next morning, I woke up, and it was my Birthday, I am now 23! This was a big day for me, not only was it my birthday but I  was giving a presentation at the conference about body image. the morning started out good, we had breakfast and the whole conference sang Happy Birthday to me, it was really special. Then we listened to a speaker talk about why it is important to be happy in all situations. Everyone at the conference had to split into smaller groups to watch different presentations. I got to present one, 27 people attended! I was so nervous because I didn’t know the girl who was supporting me to present and I haven’t done a presentation in a long time. It went amazing! It was different from my other presentations because I was talking to adults, and not grade 5 students.

Throughout the conference they were giving out door prizes, I won one on my Birthday! To end the conference they had a big dance for everyone. I danced the whole night away, it was such a great way to end my birthday. The next day, my mom took me to the mall to go shopping, I bought a lot of stuff. Mostly clothes.

Thursday February 1st was Roseclub Valentine’s Craft night. I really like doing the craft,  I did it all by myself. It was really neat.

Thursday February 8th I went to Hospice Society’s CFCW Critters VS Camrose Minor Hockey Coaches at the rink with Becca & Craig. It was very fun to watch. They threw out free t shirts to the crowd. There was a mascot walking around the rink. Becca and I shared poutine it was really good!

Tuesday February 6th we did our first presentation of the year at Bawlf School. Mrs. Holm had us come to her class. Here is a picture of me presenting.

Friday February 9th we did a presentation at Ecole Sifton, Mrs. Barclay’s class. I left the  the presentation and felt like I made a difference!

I am working on a book it is all about my Learning Board Project and how it came to be. I called the book “A Young Advocate with a Dream” The Secret Story of Kelsey’s Learning Board Project.

 

February 12th my staff Karli and her husband Alex came by with their new addition baby Wren so we could meet him. I got to hold him he was so cute and so tiny.

Thursday February 15th we had another presentation at Sparling School. Mrs. Dunnigan has us come to her Grade 5 class.

Thursday night we celebrated my roommate Theresa’s 49th birthday. It was really fun. We had a pizza party and we had her favorite cake “Black Forest”. It was so fun when she opened her gift you can really tell that she is so happy. We are going out on Saturday to celebrate at Mr.Mikes with our roommates and maybe some other friends of Theresa’s.

We have so many presentations lined up this month and next month. We are really looking forward to this year! This is my 4th year doing presentations and I LOVE IT!

 

On Sunday the 14th I took my new water colors and my new coloring book from Miss C to my parents. The book is kind of like stained glass you can see through the paper. It was really fun and this is my first painting.

On Tuesday afternoon I did some work experience  at Centra Cam. This time I folded towels. I did a pretty good job!

On Tuesday evening my Moms friends and I went to Starbucks to celebrate Lisa’s 50th birthday. She was away in New Zealand and just got back.

On Thursday I finished my Learning Board Poster on Fill Your Bucket. Check it out! What are ways you fill your bucket?

Ways my bucket is filled:

• When people tell me they like my BLOG!
• When people tell me I walk well in my walker it encourages me to go farther!
• When people say you do so well on your school presentations!
• When people take time to understand me 🙂

My first Special Blog goes back to when I started school and how things could have been different.

FRIENDS……

• Positive – could make friends no problem
• Negative – I couldn’t go to their houses, they had to come to my house. Their houses always have stairs. So that means I couldn’t go to most of my friends birthday parties.

HAVING AN AIDE….

• Positive – They could help me with school work and there was no chance for bullying.
• Negative – I was always with the adults because I couldn’t go play and I heard all of the adult gossip and things about other students. It was hard for me because sometimes you don’t want to know about everyone’s business!

PLAYGROUND…

• Negative – There was no where for me to play! The equipment wasn’t designed for kids with disabilities. I can’t even go on a playground because they are usually covered in rocks or sand! My wheelchair can’t move on rocks or sand!

A positive would have been something like this…..

This summer I got to go on a swing at Camp L.G. Barnes in my wheelchair.

I can’t help but think of how great it would have been to have something like this when I was in school. We looked up a few things on the internet and these are cool accessible playground things for kids. It would be great to see this at a playground in Camrose.

This was a project done in the United States. You should check it out!

http://www.globaldisabilityrightsnow.org/impact/armenia/playground-everyone

INACCESSIBLE SCHOOLS

As I started doing my presentations I found not all schools are accessible.

The schools I went to while growing up were easy to get around in my wheelchair, everything was on one floor. Chester Ronning didn’t have a Wheelchair Door Buttons but they do now. In the Comp they had elevators and a lift. I was thankful for this.

I found the following when we went to do school presentations:

• One school we could only get in the gym, if I had to use the bathroom I wouldn’t have been able to without someone carrying me up the stairs.
• Another school I could only go in the Band Room. The school had a ramp to get into the school but there were stairs inside.
• Another school had a wheelchair system in place but it was only for one student that used it.
• One school has stairs right when you come in the front door. I had to use a side door to get into the school. This school also had a larger bathroom that was supposed to be for wheelchairs but I couldn’t even get in the bathroom stall with my chair and we  had to leave the door open while I went to the bathroom…….AWKWARD!

When we do our presentations we have to ask can I come to your school and can I get into your school! It isn’t a question they think about….

Don’t get me wrong I love going to the school’s it’s just another part of having Cerebral Palsy. I just have to figure out different ways to do what I need to do!

On Saturday the 6th Miss C and her Mom came back to Camrose to exchange Christmas gifts. I got a canvas picture of us from our last visit. I also got lots of coloring books, water coloring markers, hair dye & a nail polish set.

She also bought me a star in the sky named after me. Here I am holding the certificates! It feels so special to have her in my life. I am not close to my Grandparents so if means so much to have someone like her.

At Centra Cam I started reading a series called “Strange Museum” I am reading the first book called “The Midnight Ride”. The book is about a family who owns a museum and they have 2 kids Jack & Maddy it is a really good book.

I started to plan my birthday party… it’s in JUNE! I want to go to the Cheesecake Factory in Edmonton! I also want to go Millenium Place to go swimming. I know it’s early but I love parties!

Starting next week I am going to do a Blog once a month talking about my life with Cerebral Palsy. I hope you start to follow my Blog and see what challenges I face every day. I am excited to share my story with you! It’s been 1 year since I started my Blog!