by Claire Marie.
When I was five, I:
Joined my first baseball team. We were green. I played all positions.
Went racing on my first ever go-cart ride.
Got my ears pierced!
Fell asleep on a raft in Lake Erie. Several times. It was so peaceful.
Went shopping at “Justice” clothing store for the first time ever. I’ve officially graduated out of the “T” club. (5T and below, no more!)
In fact, when I was five, I grew so many inches in such a short time, I’m pretty sure I broke some crazy record. I am tall. I’ve gotten fitted for a lot of new equipment that hopefully I’ll be able to get.
I went bowling a few times.
I went on a 5 day AAC summer camp in Pittsburgh with my Rett sister Gabby, and our moms.
Shhh. I possibly developed my first crush… on Bruno Mars. (Don’t tell my Dad!)
I danced in my first recital with the only guy in the world that matters: my Dad. (You can tell him this, though!)
I won the award of being “the best cheerleader ever”, as I supported my brothers’ million sports games between baseball, football and basketball. In fact, I wanted to be a cheerleader for Halloween, and I was.
I understood what it meant to have a really good friend. My first official BFF actually, Molly. Being with her makes me so happy.
When I was five, I went to the most magical place in the world: Disney World! I made lifetime memories with my grandparents, my aunt and my family.
I saw my BFF, Molly, while we were in Disney World – how “cray!” (as we would say with my talker) was that?!
I rode my first rollercoaster while at Disney. I proved to be quite the thrill seeker and I surprised my parents.
I lost my first tooth! The tooth fairy visited me, and my Dad and brother took me shopping; I got to pick out my own toy with my very own wallet and money.
When I was five, I felt so loved, safe and happy at school. My teachers knew me best and took really good care of me. We learned while having fun! I am going to miss them. A lot!
I also understood how cool it is to get your fingernails painted!
I enjoyed playing with my cousins. It’s cool that Colin is old enough now to join us on the trampoline. Little Ethan, was born in November; he’s adorable, and pretty soon he’ll be joining us on that trampoline! Caitlin is going off to high school. No matter the gap in age, we all have fun together and I love being with them.
I loved spending time with my brothers. They’ve been helping me a lot more than ever before with many things. We attempted to bake a few times, all while making fun of Mom since we all know she’s a much better cook than baker. P.S. The cookies turned out okay – not sure how, since she never measures anything!
I got an adapted spinner for Christmas and had more and more nights of family game night… Love!
When I was five, I also:
Rode my first ambulance ride from one hospital to another with my mom, followed by a stay in the PICU. This was scary.
I broke my previous record of hospital stays in a year.
I lost the ability to swallow consistently, and received my first feeding tube as a result. Since receiving the feeding tube, I had to get it replaced 4 times within 2 months due to complications. I am still not out of the woods with this. But hoping to get there soon because I really miss swimming.
I had some bleeding issues with my ears. I didn’t like how it made me sick when they had to flush my ear the day before Christmas. I may need to get surgery to get some of the bleeding issues resolved. I will find out in a couple weeks what the next steps are.
When I was five, I was lucky to have a couple really amazing people (nurses) who helped take care of me when my mom couldn’t. They became a natural part of our family and made me so happy for a long, long time. I also learned how it was hard when those people had to move onto other things and I had to say goodbye to them. Finding a replacement was hard not only on me for many reasons, but also on my brothers and parents.
I flew to New York to visit my Rett specialist again with my parents. While we worked hard when we were there, we also had fun swimming, eating New York Italian food, and just hanging out at the hotel. I lost pretty much all ability to take even one step by myself now. My overall balance isn’t what it used to be. This time last year, I could walk (with assistance nearby) for a short distance. My doctor thinks I regressed so much because I grew so tall, so quickly, plus my heel cords and hamstrings are so tight. My doctor told my parents how aggressive they need to be this upcoming year with my physical therapy plan, because if I don’t get this skill back within the next 12 months, it will forever be gone. My mom set up a plan and I’ll be working hard on this, big time… even if the goal is to take just a couple steps by myself again.
When I was five, I worked harder than I’ve ever had to work before with my body, to keep it from giving up on me further.
So, that was then.
And this is SO NOW…
Now that I’m SIX!, I:
Will continue to play on my baseball team. Maybe I’ll start to focus on a couple positions this year.
Want to try new rollercoasters and faster go-carts. Who knew I’d love these so much?!
I love looking through the clothes that I’m getting from older girls who are friends of my parents. I look like a rockstar and I am a lucky girl to receive these from them.
I will continue to love Bruno. (Sorry, Dad)
My dance for my dance recital this year is with my friends and I’m so excited. (Sorry, Dad, again… I’m growing up but you’ll always be my #1 – you know this!)
Now that I’m six, I’ll continue to be the best cheerleader/ sister in the world. On top of baseball, football, and basketball, now they are doing track too?! Maybe this whole cheerleader thing comes with a limit. Jury’s not out on this one, just yet.
I have a lot more teeth to lose… in fact, two are getting pulled in a couple weeks and one is loose. The tooth fairy better get a second job to keep up with my progress!
I will be transitioning into a new school. Like, starting next week. I’ll be riding a school bus. I’ll be attending full day (for part of the week). I’ll be meeting a lot of new kids. Hopefully meeting new friends. I’ll be learning tons, and pretty sure I’ll be tired a lot at first, and nervous too. I am going to miss Molly. Big time. I’m going to miss my old teachers. But I’ll still see Molly at therapies and our moms are going to get us together. My mom tells me, “Make new friends. Keep the old. Some are silver and the others, gold.” I’m pretty sure Molly is one of the gold ones.
Now that I’m six, I got a foot spa mini tub for my birthday. I’m going to continue enjoying my girl time, while getting those finger (and toes) painted!
I am SO excited to have two new (like freshly new!) cousins, Caiden and Kieran! I’m sooo the older cousin now, and can teach them a lot of fun new things soon! They are so cute and I can’t wait to meet them. I love all my cousins!
Since I’m taller, I need new AFOs. (Ankle, Foot, Orthodics) I picked out the design myself. They, of course, have dancers on them. I get them in a couple weeks. A girl can always use a new pair of shoes!
Now that I’m six, my parents will never again worry about me not getting enough hydration, or medications, or food if I’m having a hard time swallowing. As much of a pain the complications from the feeding tube have been, my parents and I agree that this was the best decision in the world! No regrets whatsoever. I even got a new bathing suit which I’m ready to use once my doctor tells me I am fully healed and can go swimming again.
A few changes happening right now at home to help me get around easier. More to come on this soon. But I just picked out my paint for my new room, and I’m super excited!!
Now that I’m six, I’ll continue to work hard. Because this is still very important. While I may not classify as “early intervention” anymore, repetition is important for my body. Every Monday, my mom will continue to take me to occupational therapy, physical therapy and speech therapy. Every Monday night when I go to dance, my brothers will be in the next studio playing piano. Every Tuesday through Thursday, I will go to full day kindergarten now. This is the year I’ll learn how to read and write. Every Friday, I’ll go ½ day to school, and then my mom will pick me up to take me to swim therapy before having music therapy. On Sundays, I’ll have my baseball. Everyday I will continue to work on my in-home therapy program and daily exercises. Inbetween all this, I’ll be sleeping. (Umm, yes!) Or playing. Or of course, watching my brothers play baseball/football/basketball/ track, or whatever in the world they are doing.
Now that I’m six, I have another whole year ahead of me to make great new memories and overcome new obstacles, whatever lies ahead. Each day, I get stronger. If not physically, I get stronger mentally. I overcome. I’m not a little girl anymore people… I’m SIX now. I may have Rett Syndrome, but Rett Syndrome doesn’t have me.