Image Map
Showing posts with label pride. Show all posts
Showing posts with label pride. Show all posts

Sunday, June 2, 2013

Stair Chair

Today's gift is a stair chair.

Well, the time has come.  The time I hate to admit had  to come.  The time where we had to put our pride aside and do what was in the best interest for us....for our family....for our daughter.

We got a stair chair.

You know, the one you usually see in the commercials with the older couple using it to get up and down the stairs.  The one I can honestly say I never thought would be part of my home.

It had to happen.  My daughter was getting to be too hard to walk up the stairs.  I could carry her, but it is not good for me to carry her as she is more than half my body weight and almost as tall as me.   Walking her down the stairs was easier, but still dangerous.

It had to happen to keep everyone safe....everyone who helps us with her care.  The stairs make me so nervous without her walking issues, so with her walking issues it was only a matter of time before someone took a tumble.  And I did not want to wait for that moment.

It was not an easy decision.

We know our daughter has Rett Syndrome.  We do not need reminders about this fact.  I think making this decision to get a stair chair was one of those decisions we knew was right, but didn't want to get it as it was just another slap in the face from the Rett Monster.  It was another way to us the Rett Monster had won.

Well it was installed this past week and there is no turning back.  Have my feelings changed now that it is a part of our family...a part of our life....a part of our home?  Yes and No.

I still do not like looking at it.  It is just a constant reminder of how Rett has taken away yet something else from my daughter.  It isn't the nicest thing to look at either.  But if you know me....I picked the chair that was not leather, so I could change the fabric on the chair to coordinate with the colors in the house. To make it more personal to us....to my daughter.

On the other hand, yes my feelings have changed.  It makes it incredibly easier to get her upstairs now. I do not have to worry about us falling.  I do not have to be afraid.  I do not have to worry about anyone else walking her up or down the stairs.  It is one less thing I have to worry about.  Since Thursday I haven't worried about the stairs AT ALL!  Now this is a great feeling!!!!

And my daughter loves it!  She loves to use her words to tell us to "go up" when we buckle her in.  She thinks it is a mini roller coaster in her home.  My other children love it too!  Though we tell them they can not ride it, as it is for their sister.  This is extremely hard for the youngest one to understand...right now....but he is getting there.  They love to be able to help her up and down now too!





All in all, it was a hard decision, but the right decision.


Here is a quote for today....

You never know how strong you are until being strong is the only choice you have- Author Unknown


© copyright 2012 – All rights reserved
365 Days Gift

Friday, April 26, 2013

Pride

Today's gift is pride.

This morning the 4th grade at my daughter's school had a recorder concert.  You remember those from your elementary school days?  I remember mine...let's just leave it at that!

Every year each grade does a concert.  I have to be completely honest and say I didn't know why my daughter was taking part in this.  Up on stage.

She can not hold the instrument.  She can not play the instrument.  She doesn't want it near her mouth.  Why was she going to all the practices and standing up on stage for the performance?  It didn't make sense to me.

Until today.

She wanted to be like her peers.  She wanted to listen and watch her peers.  She wanted to try.  She wanted to have fun.
before they started playing

She was so proud of herself up on stage.  Proud of herself for standing there for 30 minutes.  Proud of herself for trying to play the recorder.  Proud of herself for being there for her friends, just like they are there for her on so many occasions.

She was smiling and dancing...swaying back and forth as her friends played the music.  It was as if they were playing for her.  And she didn't care she wasn't playing the recorder.  In all honesty, she probably was thinking to herself she got the better deal!  I tend to agree with her!


The best part was her teaching assistant, her "Anne Sullivan", and how she supported her in this concert.  Not just physically in case she fell over due to her balance issues right now, but I mean emotionally too.  She wanted this to be a fun experience for her, not something she dreaded.  Her "Anne Sullivan" really wanted to see if she would try blowing into the recorder herself, but needed to find a way to get her to put her mouth on the instrument...as she didn't even want to do that.  So she decided to put marshmallow fluff on it as she she loves marshmallows.  Guess what?  It worked a little bit, but not much.  The funnier part was after she had the recorder to her lips, her lips would then be a little white from the fluff!  My good friend who I was sitting next to and I would motion to "Anne Sullivan" to let her know to wipe her lips off!  It was really sweet how tried to think of ways to get my daughter to want to try.  And she did try...and that is all we can ask of her.

If you had never met my daughter and "Anne Sullivan" before today, it would be safe to say you witnessed an amazing connection between to people.  You can see it in their eyes, in the way they speak to each other (words and no words), in their movements, in every step they take.  My daughter was having the time of her life up on stage...doing what she felt comfortable doing....with her peers and she didn't care what anyone thought.  And "Anne Sullivan" was there every step of the way giving her all the support she needed.

Seeing her smile and her dance on stage made me realize....this is what it is all about.  Having fun and not caring what others think.  Being proud of who you are and what you are trying to do.  My daughter was definitely proud of herself today....and I was too!

Here is a quote for today...

Take pride in how far you have come and have faith in how far you will go- Author Unknown




notice the white "fluff" lips?


starting to swing back and forth...her dancing



loves watching her friends











© copyright 2012 – All rights reserved
365 Days Gift