Really Living Life

I had one of the best experiences of my life this past summer. I got the opportunity to do adaptive surfing with the Adaptive Surf Project. I was in Myrtle Beach, North Carolina for a CURE CMD family gathering weekend. Cure CMD had an amazing weekend planned that was jam packed with activities anyone can enjoy.


 

We set out on a Saturday morning to meet up with the other participants and the volunteers from the Adaptive Surf Project. The beach is something that is typically very hard for me to access and enjoy. As soon as we got there I knew this was going to be a different experience. Mobi-mats and tents were already set up so our group had immediate access to the beach, something rarely found at a beach in my experience. The sun looked so pretty sparkling against the ocean water. The sand felt rough and coarse. The sand had made the shells smooth and unique. I was so excited to get to use a wheelchair at the beach to get right out onto the sand. I was able to see my friends and get to enjoy the beach, ocean, and activities. Getting to be so close to feel the ocean water and taste the salt was incredible.  I was so pumped to get out on the waves. As soon as I had heard about the family weekend itinerary this was one of the highlights on my list. Before we could get out on the waves a volunteer came up and enthusiastically told us all about the surfboard options that we could use. They had three options with additional supports available to make sure that they could work for all the participants. They had one you could sit on an adapted and supportive chair on, one that you sit on with support from other surfers, and one you could lay on. Everyone participating has different abilities and comfort levels with surfing. The Adaptive Surf Project volunteers were so excited and welcoming we knew instantly we were in good hands and it was going to be an amazing experience.




Each participant had the opportunity to surf one at a time. My friend went first. It was so exciting and exhilarating to see her smile, surf the big powerful waves, and the crowd cheering for her. It made me so excited and confident that I could do it. I was up to surf next. I got all set as the volunteers helped me onto the surfboard. A volunteer was already sitting on it to support me and keep me safe. Another volunteer was behind her steering the surfboard. Many volunteers were pushing it out into the powerful waves and making sure I was safe and comfortable. I felt so excited when the first wave came up behind me. I was going faster than I ever had in my life. I felt like I was practically flying. I don’t remember ever tasting salt water. It kept coming up into my face and made me feel amazing. Every time I went rushing towards the beach on the surfboard I saw my service dog Tibbs and my family watching and cheering for me. It made me feel so happy that everyone could enjoy the beach together. I felt amazing, I had not moved that much in years. Feeling the waves hit the board and splash me were so freeing.

 


Once we got done I was moved to a beach wheelchair and could enjoy the feeling of sand with my friend and watch my other friends surf. Tibbs was so excited when I came on shore and was sure to give me lots of love knowing I was back and safe with him by my side. A reporter came up and asked if I would do an interview about my surfing experience. I was sure to tell them how amazing it was, and I know it is an exceptional experience I will never forget.
 

Wonderful pictures and events are thanks to CURE CMD, The Adaptive Surf Project, and Ryan Elswick Photography. 

Happy 3rd Birthday Tibbs!

 Tibbs is very excited to celebrate his 3rd birthday! A dog birthday at our house is much like a family members birthday.  We give lots of love and treats, maybe a "few" new toys to enjoy as well. Tibbs gets time to play every day, but I always try to make his birthday extra special. A birthday to me is a celebration of the year that's gone by, and a start to the year that is to come.  This has been a difficult year for me, and Tibbs has been a great help and by my side through it all.  Tibbs has greatly expanded his vocabulary.  For example I don't have to tell him "get your toy" I can specifically name one and he will get it as fast as he can.  He can identify my shoes and the pair I want.  He gets me just what I need. When I am having a bad day he knows just what will make me feel better.  This year he has completely settled in, and is completely comfortable.  He loves completing his "work" each day.  We have had many adventures this year, and I can't wait to see what this next year will bring!

 





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Rare Disease Legislative Advocates Youth & Teen Advocacy Day

Rare Disease Legislative Advocates Youth and Teen Advocacy Day took place on June, 18th 2024. I had the opportunity to speak about important acts that directly impact kids and youth with rare disease across the country. I felt it was a very great experience. During my meetings The Accelerating Kids’ Access to Care Act, as well as the Creating Hope Reauthorization Act were my focus.  Having a rare disease has many challenges. Sharing about my life experiences with the hope that it may help change and make things better for others with rare diseases across the country is empowering. I will say that I was very nervous.  The meetings all took place over one day and were done using Zoom meetings. I felt like I got better throughout the day.  I had prepared notecards and been preparing by practicing with my family for the meetings. They helped me to be confident and remember what I wanted to say.   I haven't done a lot of public speaking in my 10 years. I have talked to kids in classrooms about service dogs and about Congenital Muscular Dystrophy.  Talking about legislative issues was a little bit intimidating.  I was very nervous leading up to the meetings. I had gotten a few emails as well as my families encouragement and support making me feel better.   Tibbs helped me get ready for me day, and helped me keep my energy up for my meetings by assisting me. Tibbs did his best to give me some extra love and support that morning as well.  It was great getting to meet with the staff from three different offices. I met with legislative correspondent Eve Schoenberg from Illinois Senator Tammy Duckworth's office, legislative correspondent Robert Spivey from Illinois Senator Dick Durbin's office, and policy advisor Worth Loving from Representative Mary Miller's office  They all were so kind and listened to my story, my asks, and asked questions to better understand how they could assist me and kids like me. During all of my meetings I asked for pictures.  I have recently learned to edit and add graphics to pictures.  It is something I really enjoy doing.  I have included them for you to see. 

                         

I felt that my first legislative advocacy event day went great. I am very glad was able to take part in the day and hope it had an impact to help individuals with rare diseases.

 

Steamboat Classic

 Last year I ran along with my dad in a running chair.  He pushed me in it for 4 miles in the Steamboat Classic race.  I don't remember every detail, but I do remember...at every corner there were people cheering and encouraging us to go on. Due to safety with the chair and the large crowd we got to start 5 minutes early.  I remember being cold from the wind on my face. I remember talking to my dad about my brother, and hoping he did not catch up with us and pass us.   I asked my dad what his favorite part was from last year's race, he said "leading off the race together, and sharing the experience with me".  My favorite part was being out of my power chair and doing the race experience with my dad. We were able to come in first in the women's wheelchair race category.  It was unforgettable.  I can never forget how fun it was.  

  

I had big plans ever since that race to do it again this year. Unfortunately due to my health I was unable to participate in the same way this year. There are many fun ways to enjoy the Steamboat Classic race including cheering on the competitors, the after party, and the Riverfront Market right by it on the very same day. Tibbs and I cheered on my dad, brother, sister, and many family and community members.  It was fun to spot them in the crowd of runners both at the start line and the finish line.  We were also able to enjoy music by the stage at the after party. I got to chat with some of my family and friends.  They had neat new drinks and snacks set up for the runners. 

 

I love the Riverfront Market.  They have so many vendors with homemade items, treat, artwork, and produce.  I am so glad it is located by the race because it is such a fun way to extend the morning for more fun.  It is very dog friendly.  Almost everywhere you look people have their pets.  Tibbs is such a good boy, and helps me shop and find great things.  We especially like to check out the dog treat booths, and handmade items they are Tibbs and I's favorite booths.  Tibbs is a pretty popular guy.  He tends to get recognized often, allowing us to meet lots of new people.  It is a very early morning to fit in all this fun, so we are always ready to head home and rest up. 

 

 The year has been off to a busy start. Getting back into school has been full time and I haven't had a chance to write for fun often.  Tibbs and I had a great time celebrating Christmas, my birthday, and New years!

We just got back from Cincinnati and although I have found lots of things to enjoy in Cincinnati,we only had time for hospital visits this trip.  Tibbs and I liked that you could see the grass there.  It has all been covered in snow at home.  It was a chilly trip and we are now both looking forward to spring!  Since it is so cold outside we have had to get creative on how to get Tibbs exercise.  For Christmas Tibbs and our other dog Kamy received the gift of an agility set.  It is much warmer to get them some exercise and keep sharp on skills in our basement instead of in the negative temperatures we have been having outside. 

Tibbs and I are going to start the year trying some new things.  I have decided to make Tibbs a Facebook page.  We enjoy taking pictures and videos.  It is hard to share all of our favorite pictures and videos on the blog.  We are hoping the Facebook page will be an easier way to do that, especially when we are so busy with school.  I am working on teaching Tibbs a few new things, and hope that we can share those with you as well.  Be sure to follow Tibbs on his Facebook page PGI Tibbs.

  

  

If you have not seen it ADI featured us in an article at the end of the year.  It talks all about how Tibbs and I like to come up with new ways to do things.  This is something we are going to focus on for 2024 so stay tuned.  I have added the link to the article below if you would like to check it out!

https://assistancedogsinternational.org/blog/2023/12/04/general/empowering-independence-a-young-innovator-s-journey-with-assistance-dog-technology/

Going to the Movies

 

Going to the movies at a theater may seem like a simple task, but it has some challenges.   Tibbs and I recently went to the theater to see the new movie "Wonka."  We walked into the theater through the front doors and the first thing my senses noticed was the smell of buttery popcorn.  It is a smell that I enjoy, but since Tibbs and I can't eat it we could definitely do without.  The large display of movie posters is always exciting.  New movies that have just come out and movies coming soon are like surprises just for you. I do not go to the movies often, but when I do it is always with a friend making it extra special. 

Tibbs is also my special movie buddy and is great at watching movies with me both at the theater and at home.   There are not many places for wheelchair seating at the movie theater. It is always a good idea to plan ahead or call and ask questions ahead of time.  I love that they have cutouts at most theaters allowing wheelchair users and non users to sit side by side.  The cutouts also allow extra space for Tibbs to get comfortable and relax. The theaters are dark and loud.  It could be very stressful for a dog that has not had this experience.  I have been to so many places with Tibbs that I know where we will both be comfortable.  Sometimes he does have his leg fall asleep and he will stand up to wake it up and reposition, but then always goes back to his down position.  Tibbs helps me when I get stressed by laying his head on my lap or my foot.  He can quietly get me things I might need without disturbing others with some hand cues.  We enjoy going to the movies together.  Tibbs and I enjoyed "Wonka"and think you might too.  

When we watch movies at home he is free to wander if he desires, but sometimes enjoys watching with me.  He is always around just in case I need him. He especially likes movies with dog characters.  I think his favorite we have watched together so far is "Beethoven's Christmas."  I hope you get to enjoy some relaxation, and maybe even a good movie this holiday season. 

 

December to December

I want to take you on a wild adventure back in time to the first home pass Tibbs and I got to have a year ago this month.  I had worked with Tibbs at outings previously, but this was my first ever furlough and opportunity to bring a service dog in training home to spend a week with me. 

I was so excited to go pick up Tibbs at the Bradley campus bright and early on a Friday morning.  Normally it takes me awhile to wake up and get ready.  It was not the case that morning.  I was so excited I could hardly sleep the night before.  I was up and out the door before my mom told me it was time to go.  When we got to the parking lot we quickly saw cars pull up with all the furlough dogs.  I immediately spotted Tibbs looking at me in the car window.  I immediately recognized his big brown eyes and doggy smile. As soon as he got to me he must have felt my excitement, as it took a few minutes for us both to calm down.  We got him all settled in the van and took him home.  

I showed Tibbs all around the house.  He loved my room.  Since he was on furlough he had to sleep in a kennel, so we got him all set up in my room.  It was hard adjusting to seeing Tibbs everywhere I went.  He seemed so big at the time and we had to learn to work around each other.   Now Tibbs looks so small to me.  Tibbs has not changed in size we are just so used to each other that I hardly notice his size anymore.  This was the first time for me working with a service dog for over a couple of hours.  At first it was a bit exhausting.  Tibbs and I were both trying to figure each other out.  We had to learn to work together, care for each other, and help each other. Tibbs was also in a new place learning house rules, adjusting to a new dog, and adjusting to living with a family with siblings and chaos.  Tibbs also had to learn to work full time with a power wheelchair, how to take commands from a then 8 year old girl, and practice working with me.  We both had our work cut out for us that week.  As you can see from the pictures below, a year ago we both looked a little different. 

   

 

We went to dog friendly places, and worked around home.  We learned how to do commands together and learned how to benefit each other.  I cannot count all the things that I learned that week. Tibbs taught me how to work with a service dog, the independence they can help bring, and that i really wanted a service dog of my own. I took Tibbs to my grandmas to decorate and make cookies and we just spent the week living life together.  We became best friends in just a short time.  We were able to go on a public dog outing and pass our level one public access test.  Unfortunately it was on our last night of furlough and I was going to have to take him back for more training the very next morning.  I unlike the week before had a horrible time getting up that next morning.  I was dreading taking him back and saying goodbye.  I shed a few tears and tried to remind myself it was not goodbye but see you later.   I miss the excitement of a furlough morning and learning new dogs personalities and new adventures with them.  I instead get Tibbs love and continued adventures something I didn't know existed then, but am so fortunate I get to experience every morning now. I still enjoy meeting all the new dogs and watching them grow and learn.  It is such an amazing experience getting to see them get fully trained and finally go to their forever homes with their person.

This December we will get to experience all kinds of holiday traditions together.  I no longer have to say goodbye and Tibbs and he and I are well adjusted.  Tibbs is part of our family and fits right in.  I can't imagine what December would be without him.