Thursday, January 31, 2013

My dancer

Every day my little girl can dance is a good day. 
A started dancing when she was 3.  She had a short cute bob, a sassy attitude and LOVED to shake her tutu!  She took two years off when we moved, because we couldn't find a studio, but when she started up again, she was reminded of how much she loved it!

This past three years with her arthritis, I have seen days when she could hardly walk.  Days when to watch her climb the stairs to the studio, I just wanted to go to her, pick her up and carry her back to the car.  There have been ankle and knee injections, but this girl, doesn"t care.  She asks again, for another round of steroid injections, because " I want to dance"  This past spring midway through competitions she said to me "Mommy I dont know If I can do this anymore.  I love dance, but my body hates me"  Every "dance mom has it in her head that at one point her daughter will be the Prima Ballerina, knowing full well in the back of her mind, that this is a very RARE thing, and well...  we can have dreams too right?

This evening as I watched her melt down once again, I felt those dreams shatter once again.  A little part of you dies, every time, a drug change happens.  A little part of you prays that the new drug, will be the cure, will take away the pain.  Tonight, she was searching for her leotard, overwhelmed with school, all of the make up work for when she misses, the new infusion of Actemra that will occur on Saturday and the lack of understanding in general of Arthritis.  A has very few days when she feel like it is all too much, but tonight is one of those for her.  She burst into tears, yelled at a couple of her siblings, and was tossing thing around her room.  As a parent these are the things you do NOT want to see your child do as a general rule.  When you have a great kiddo like A though...  moments like these are acceptable.  She obviously needed to apologize to her siblings.  Home should be a safe place to vent right?  Tonight, she said, "Im not sure if I wanna dance anymore"  my hear sinks...  This has been her love her whole life.  Yes, I taught her to love it by starting her so young...  She talks about being on the highschool dance team...  I dont know how much of a reality it is...  But what ever she chooses to do, I will back her 100% because that is what good mommy's and daddy's do.  You love and support your child no matter what is going on in their life.

Tonight when she gets home, we will snuggle for a bit...  away from any windows...  because what 13 1/2 year old wants to be seen snuggling their mom right?  Tomorrow, she may take a "mental health day"  to deal with the up coming stress of her first Actemra infusion, and she will be my sweet girl.  The girl who no matter what kind of pain she is in will, laugh, joke, listen to One Direction, tell her friends she hates her moms music, and belt it out in the car...  and be the amazing person i have blessed enough to be the mother to!

1 comment:

  1. I was a ballerina as a child as well and stopped in H.S. I always thought I would be able to go back. What is amazing is that I found something in my life that I am just as passionate about as Ballet!! I began belly dancing at 35 yrs old! I am now 38 and had a shoulder replacement and hip replacement before belly dancing, had my other hip replaced a year ago and went back to perform 9 months later!!! If she has a passion for it, she will dance. I wish her the best! I also came to your blog for another reason...

    We are 18 days away from World Autoimmune Arthritis Day 2013 and it’s time for us to mobilize one of our greatest assets- our Blog Leaders.

    I will be sending additional information shortly but we have planned several blog activities to support WAAD and to highlight your contributions to the autoimmune arthritis patient community.

    Your first assignment: We are asking for your help to spread the word that registration for WAAD is now open.

    Would you be able to write a brief post on your blog that includes our registration information and link?

    It's time to REGISTER for FREE to attend World Autoimmune Arthritis Day's 2013 Virtual Convention!

    You can also tweet about it: Register now 4FREE! WorldAutoimmuneArthritisDay #WAAD13 5.20.13-LIVE chats/Experts/36Nonprofits!

    Some background detail for you: World Autoimmune Arthritis Day is an annual 47-hour event where nonprofits, advocates, and experts from around the world unite in order to provide educational and awareness information to patients, their supporters, and the general public. This years event aims to triple in size from 2012, adding Nonprofit Booths, Vendors, a Raffle and a special feature: A Day in the Life with Autoimmune Arthritis (an Apple/Androis app and Exhibit Booth).

    WAAD13 begins at midnight of the first World Time Zone and ends at 11:59 of the last World Time Zone, or 6am ET/USA May 19th and ends at 5am ET/USA May 21st, 2013. It is an interactive, LIVE, Virtual Convention that you can attend for FREE...just find an internet connection and join the rest of the world for 47 hours of education and fun!

    Please confirm if you are able to include this post and get excited for our upcoming Blog Carnivals and exclusive Blog Leader event.

    Thank you,

    Dana Morningstar,
    Volunteer/Blog Leader