Where It Counts

Today I read this on facebook and just had to share :)Love the image too!

I'll never be on the cover of some glamour magazine. I'll never wear a crown or be a beauty queen. There are days I look like hell, There are days I show my age, But in my heart... where it counts I'm Beautiful all the same. I might not save the world, I'll never cure some deadly disease Won't fly above the trees But I'll do my best to change the world a little each day I'll do my best to make a difference, Touch the heart of someone as much as I can, Make a mark on the world where it counts. I know many who will try to put me down, Many who would love to see me fail, But I know who I am and that's where it counts. ~ Written by K.D. Storm

Santa Claus

This year I thought was a good year for Hailey as far as the Santa Claus thing goes. I wanted to know whether she was getting the whole concept about Santa or not, so I decided to ask her questions about what she was getting for Christmas. Obviously Hailey couldn't tell me in her own words, she doesn't speak, so my questions would simply be yes or no questions. Hailey is very good at shaking her head no and when she nods her head up and down for yes, it is much more of a subtle nod, If you are not paying close attention you just may miss it. The first question I ask her is..."Hailey, have you been a very good girl this year?" Hailey slightly nods her head up and down. and then I ask..."Hailey, is Santa Claus going to bring you lots of toys?" again her head slightly cocked and she is nodding up and down. So I continue... "Is Santa going to bring you a doll baby?' up and down again. "Is Santa going to bring you a truck?" this time I think i'm going to trip her up abit, but she slowly nods her head up and down again. Now I'm thinking she is just saying yes to everything I ask her. My next question..."Hailey, is Santa Claus going to bring you some new clothes?" She briskly shakes her head NO! Just like any typical 4 year old, she is not as interested in the clothes as much as she is the toys. The following day I went home and wrote her a letter, the return envelope was from The North Pole. When Natalie read it to her, she listened attentively as her mother read these words...

Dear Hailey, Rudolph just whispered in my ear that he can hardly wait to lead the reindeer with my sleigh full of toys on our long trip from The North Pole to your house! I will be making my list and checking it twice, please continue to be a good girl. I know that you are 4 years old now and getting so big! The other day I looked into my crystal ball and discovered that you are going to have a little brother soon.This is great news, I just know that you will be the best big sister ever. I must go now to check on the elves in the workshop where they are making all the good boys and girls their favorite toys. I think I saw them making a new doll house for you! We will be loading the sleigh soon and heading your way. Ho, Ho, Ho, Merry Christmas, Love, Santa Claus Hailey's face lit up like a Christmas Tree!

Hailey with Impact Dance Company

A while back I wrote a post called "A Dance for Hailey" Hailey's mom Natalie has a best friend who has a dance company called Impact Dance Company, it is a fairly new company but the dream to do this choreography has been in the making for almost 5 years now. Ever since Hailey was born with Cerebral Palsy, Meghan McCaffrey dreamed about doing a dance piece that would help others to understand and raise awareness for Cerebral Palsy and to celebrate Hailey and all that she has to offer. Well, today we had the opportunity to meet the dancers and the dancers had the opportunity to meet their inspiration (Hailey) The had the opportunity to observe Hailey's movements, and the way that she crawls,smiles,sits acts, and laughs. The next two videos are just so exciting to me, as I watch Hailey act out and perform with the dancers without any prompts from us, she was totally comfortable with what she was doing and even commanded the stage. One of Hailey's dancers summed up our morning by saying " We danced, we talked, we laughed, we learned and we cried" All of these emotions were present and I can't figure out who learned more. Us, The Dancers or Hailey. But I do know that it was one of the most positive experiences for everyone involved, and we can't wait to do it again. I don't quite know all the details at this point, but Meghan tells me she plans on doing this piece in a theatre, it will start out with some information about C.P., Possibly a video chronicalling Hailey's journey this far, and the finale will be a Rockin performance by her dance company that will captures the true spirit of Hailey. This is going to be a lot of hard work over the next few months, but I know it will be worth the wait! Thank you Meghan...head on over to Impact Dance Company become a fan and you can track the progress of this lovely and heartfelt performance for Hailey

Wheelchair Acceptance

Well, yesterday was an extremely emotional day for our family. Though some of us handled the news better than others. It wasn’t a total surprise when Natalie called me to let me know the news. Hailey’s PT recommended that Natalie contact children’s hospital about getting her a wheelchair. There has been talk about this in the past, so I don’t know why it hit me so hard, but it did. Like a ton of bricks. I was at work and I just couldn’t wrap my head around it, I couldn’t get myself together and I felt awful when my waves of emotion took the place of getting my job done, but I couldn’t concentrate, I just wanted to go home and go to bed, put the covers over my head and wake up in the morning and discover it was all a bad dream. I felt compelled to drive over to Natalie (because I know she was feeling it even more than me) and hug her and let her know that everything was going to be o.k. Little did I know that she was already headed over to my house with Hailey. She said she was in the neighborhood, but I think that subliminally, she wanted to be with people who love Hailey. She knows that she can always count on us for support. We have all been through so much together as a family. I guess I kind of secretly hoped that Hailey would get to a point where she would be able to walk with assistance, and that one day the only thing that she would need would be help from a canine assistant. So to here from a professional that this is not the case, it just knocked the wind out of me. Now that I have digested and regurgitated the news, i’m o.k. with it. Why wouldn’t I be? As my husband says “Hailey is still the same beautiful girl today, as she was yesterday and will be the same beautiful girl tomorrow” I know this is true. So, as I usually do when I hear new developments about Hailey. I get on the internet and I talk to my blogger friends, the people who understand first hand about what is going on in our lives, because it is also going on in theirs.(special thanks to Cary from about the small stuff) I have to constantly remind myself to stay focused on the positive and not let these barriers swallow me up, and to remember that wheelchairs are just a good way of getting around if a person has trouble walking. I also know that there are others out there who do not have the mobility to use a wheelchair and I should be grateful that Hailey is a candidate for one. Just because Hailey will be using a wheelchair does not mean that we are giving up hope, that one day Hailey will walk. We will continue to challenge her to reach her own personal potential, whatever that may be.

There are just so many unanswered questions: I wonder if Hailey will use a manual wheelchair, or if she would be better suited with a power wheelchair? Will her motor limitations allow her to maneuver the controls like a joystick, or will she have the strength to push herself along. She will have to get used to it in school, at home, travelling etc. It will be quite different. I wonder about how the wheelchair will transport? If we need some kind of conversion van, or lift. I wonder if we will eventually need a wheelchair ramp? I wonder how Hailey will adapt to using this new mode of transportation? My sense and my hope is that she will adapt fairly well. Her strength, determination and perseverance will be tested once again. As I have said so many times before, I believe in Hailey, she has led the way for our family on this uncertain path this far and she will continue to lead us down this bumpy road, only this time she will be doing it on wheels!