Thursday, September 20, 2012

Her Climb

Today's gift is her climb.

Her climb...to overcome all her daily challenges.  Her climb to catch up with her peers.  Her climb to be the best she can be.

This morning was a PT morning (physical therapy for those who are not familiar with my lingo...I wish it was personal training as I could use some right about now!), which means we have extra time in the morning.   My daughter slept in and I got her ready leisurely allowing us to have a relaxing morning. Many people start their day with a cup of coffee or tea, the newspaper, watching the news, or whatever is part of their morning ritual.  Well, for my daughter, she starts her day (and often ends it too) watching Hannah Montana.  We watch DVD's of all the seasons and we also watch her movie, Hannah Montana, where she tells her story, how Miley is also Hannah.

Today, we had time to pick up where we stopped watching the Hannah Montana movie the other day, which happened to be right at the part where Brody finds out Miley is also Hannah.  I know many people have different opinions of Hannah Montana and Miley Cyrus, I get this. However, in our house she has become a part of my daughter's every day life.....I'm not kidding. Everyone in my house has pretty much every episode from Season One (our favorite) memorized!  Even my daughter has her favorite episodes and lines and when she sees them or you say them she starts laughing.  There is something about Hannah Montana/Miley Cyrus my daughter just loves and finds comfort in her...her shows....her music.   It is just like when your child loves Elmo, Dora or The Wiggles....they make your child happy, they love the music and we want nothing but happiness for our children....especially when they face uphill battles daily.

When I started my first blog, it was after we saw the Hannah Montana movie.  I named my blog, Her Climb, after the song The Climb, from her movie.  The words to this song were too perfect for my daughter and how she fights every day to be a "typical" 11 year old.  And let me remind you, being a tween girl is hard whether you have special needs or not.

We listened to The Climb this morning and then ran out the door to physical therapy.   There really could not have been a better song for us to start our day together than this one.   Here are the words....

The struggles I'm facing
The chances I'm taking
Sometimes might knock me down, but 
No, I'm not breaking 
I may not know it, but 
These are the moments that 
I'm gonna remember most
I've just gotta keep goin', and 
I gotta be strong
Just keep pushing on

There's always gonna be another mountain
I'm always gonna wanna make it move
Always gonna be an uphill battle
Sometimes I'm gonna have to lose
Ain't about how fast I get there
Ain't about what's waitin' on the other side
It's the climb

My daughter's daily challenges start every morning with her not being able to sleep sometimes...and poor sleep habits can lead to other issues throughout the day.  She has trouble getting dressed by herself, she can not wash herself or brush her teeth, she can not brush her hair or style it, she can not prepare her meals or feed herself without assistance, she can not walk up or down the stairs alone without assistance....she requires help with all aspects of her day.  She WANTS to do everything by herself, but it takes time for her to learn the skills needed to do them alone.   I don't know if she will ever be able to do the things I've listed above "alone", but having her be able to do them with minimal assistance is our goal.

Everything she does is a mountain she is trying to climb.  For example the latest climb has been, getting her strength back from her tendon lengthening surgery she had on September 29th, 2011.  I never would have thought it would take her 8 months to start walking again....and this is walking with lots of assistance.  I know it was so frustrating for her, as she was my energizer bunny who never stopped and ran around the house and jumped on furniture...yes she loved to do this!  To see her determination to get her strength back was inspiring to me.  She tried and tried and when her legs would start to give up, she would sit briefly and then try again.  Physical therapy was not fun at times, but you know what they say....no pain, no gain.  She needed to be stretched and I am sure at times this was painful, but we did not want to lose the range she just gained from surgery.

When she finished school in June, we decided to go hard core with physical therapy over the summer, in hopes she would be able to walk unassisted back into school in the fall and would not need her cruiser during the day.  Over the summer she worked extra hard to get her strength back and I am very proud to say, she is not only walking around school, but running and skipping!

When we left therapy this morning, the program coordinator who does not provide clinical care for the patients, said it is amazing to see the progress she has made since she started therapy with them in May. She said she is a different child...the one who walked in needing to hold my hand and would bend at the waist as she was unsure, is now not only walking in on her own, but when her therapist is getting the next station ready, my daughter will run in the opposite direction!  Noticing her strength is back not only is apparent at therapy, but at school too.  Teachers, her peers and other parents are commenting on how, "she is walking again!"...something they too missed seeing her be able to do.

Her walking is just one example of her climbing a mountain.  Everyday we are working on new skills with her to get her to be the best she can be with Rett Syndrome.  Whether it is talking, reading, science, social studies, activities of daily living (like feeding or dressing), walking...you name it...it is hard for her and is a challenge.  Something so "easy" we take for granted EVERY DAY is not EASY for many people, but HARD WORK.  Until you live with someone who faces these challenges daily, you don't think about them...you just do them...it becomes second nature.

The latest mountain my daughter climbed was gaining her strength back to walk again.  She did it!  Sometimes it did knock her down, but she didn't break.  She kept goin' on....she was strong...and just kept pushing on.  It was an uphill battle for her.  It definitely wasn't about how fast she was going to get there and it wasn't about what was waiting on the other side....it was the climb.  The climb....the courage....the determination...the strength to overcome this struggle she was facing.   And when she got to the top....guess what....the view was great!

Instead of quotes tonight, please read the words to the song again.  The first time I heard the words to this song, I immediately thought of my daughter.  And every time I hear it, I think of every mountain she has climbed and how yes....these are the moments I do remember most.





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