4.25.2015

First Dance Recital... & Why it Matters

Today, our Ellie Girl danced in her first dance recital.  
After an awful month with a new diagnosis of Perthes Disease in her bone, a flare up causing 19 days of intense pain and immobility and sleeplessness, use of a cane and wheelchair, today I just sat in the dark auditorium in tears of gratitude and relief.
When the flare up began, I didn't know if Ellie would be able to participate in the recital at all.
Today, I watched my daughter dance & sing for 3.5 minutes to Raffi's Baby Beluga and I've never been so happy to hear that song (or relieved to not have to hear it again!)

This morning, I put makeup on my daughter - a little eyeshadow, pink lipstick, blush and lots of sparkles.
Lately she's been telling me "Mommy, you aren't perfect but you're bootiful to me."
I told her she is perfect for me.  She wanted to know if she was "bootieful" too.  I told her she is so beautiful - she is kind to others, she is tender hearted, she is sweet and smart and hilarious and creative and a thinker and yes, pretty and beautiful.

Today, my daughter was able to dance without her assistant on stage!  Today, I remembered being engaged to R and together going to this same studio's dance recital 13 years ago to watch Sarah in her dance recital... our flower girl.  Today, she is in high school and has been a brilliant assistant for our Ellie.  
Today, my girl danced on stage with her best friends.  She was one of the girls - just like her friends.  She wasn't different or defined by her abilities.  She was just a typical four year old who sometimes missed a step (or few) & loved the stage.




Today, family drove in from all over Texas and we filled lots of seats to cheer for our Ellie girl.  4 grandparents and 2 greats! Oh she is loved!







Her daddy is setting a high standard for boys in her life and brought her a dozen pink roses
Her aunt and uncle surprised her with her first flower delivery!

And grandparents delivered sparkly colorful flowers.
We served lunch of her favorite foods and pink ballerina cupcakes


Recently I was in tears to a dear friend and confessed my fear that Ellie would have to miss her dance recital.  My friend asked me if this mattered for Ellie or for me.  She was helping me get to the heart of my tears.  I thought about it for two seconds.  While I knew Ellie would love the stage and attention and costume and makeup, I also knew that she wouldn't know she was missing it if we didn't make a big deal out of it.  I get that she's only 4 and the show could go on without her.
So I began to think maybe it was about me.
But I quickly realized that maybe it was about both of us.  I've had a lot of "normal" ripped away from our parenting experience and I didn't want one more thing ripped away.
I'm not a dancer nor was I as a kid - not past age 9 at least.  I was the girl always in the back row and probably a step or 2 off.  And I feel okay about my life without dance abilities - I've had other things to be proud of.  So it wasn't about seeing my daughter excel in dance because that was not an area of excellence for me.  Seeing my kids excel in any activity is not my expectation - I'd prefer they do things they can enjoy and work on to improve and make friends and take joy from.   Rather, it was about seeing my daughter have the opportunity for the experience.  I wanted this for her - in part because I fear it may be her only opportunity.  I don't know what the next few years will look like as we figure out this bone disease but I fear she may not be able to participate for a few years and that when she is healed and able to fully participate, I fear that the arthrogryposis in her joints will have created a big gap between her and her peers.  At age 4, the gap isn't so big - quite a few of the girls couldn't get down and up for the flash step today so she didn't stand out.  But that gap will widen and I'm afraid as she gets older that she may not feel comfortable putting herself on stage when her differences are more visible and the steps more technical.  I could be totally wrong but I'm trying to think forward and hated to see her miss the opportunity while she had it and while she had worked hard all year for it.
We have tried to parent in such a way that whenever our kids have expressed an interest in an activity, we've worked hard to make that happen.  When Will has wanted to try various sports, I call sports recreational therapists and have custom equipment created for him to enable him to participate in the sport.  I've called coaches and explained his situation and brainstormed and encouraged them to give him equal opportunities.  We've set up meetings for Will to show coaches that he can in fact participate.  For dance, I hired Ellie an assistant and found a precious teacher and studio that would be gracious and welcoming and embrace her.   We have worked hard behind the scenes to ensure they have the opportunities to dream and achieve and participate.
Our kids are still figuring out their interests - I have no idea what they may excel in but I want them to know that they have options and that we are proud of them for trying things regardless of their level of achievement.   It matters to me greatly that they each always know we believed in them.  I need my kids to reflect back on their childhoods and their opportunities as evidence that we and their grandparents and their teachers and coaches and peers believed they are worthy and capable.    This matters.  I want them to be able to participate in conversations with peers - to have shared experiences and say they too have played baseball/soccer/been in plays/danced for that studio in a dance recital/etc.  It's another goal of ours that we show their community that they have more similarities than they do differences with others.  We do this in part by ensuring they have common experiences.
Mostly, today mattered to me because I believe it will matter to Ellie someday.  I believe she needed to see her family rally around her and smile and beam and be so proud of her.  I believe she needed to feel beautiful and sparkly and fancy.  She loves music and dances around the house and today her spirit came alive on that stage as she danced for the crowd.   Today she wasn't the girl with the diagnosis or the disease or the pain.  She was another precious little girl on stage dancing her heart out - and she will always remember her first recital.  Today, this mama cried tears of gratitude because this recital for my girl mattered - for both of us.

2 thoughts:

Elise said...

Katie, your perspective is (as usual) amazing and eye-opening. I completely understand that fear of missing out on the few opportunities for Ellie to participate alongside her peers. We at KIT hope to maximize those opportunities for all kids at all ages, so I'd love to see Ellie dancing with her friends in ten years, too (or doing whatever it is that brings her joy and a sense of accomplishment at that point in her life)! Keep on pushing your kids to pursue their passions-- you are a wonderful mother, and your stories always remind me of why I chose this field! Thank you!
--Elise, Kids Included Together

Erika M. said...

Dear Katie,
I want tell how much it has meant to me to see this little girl grow up. I remember sitting in my mom's lap reading the post you wrote on her birthday!! It was so beautiful. Your baby girl is so blessed. I rejoice with you and am so excited she was up on that stage dancing her heart out. I totally understand you wanting for Ellie to do all she can. I can also say that as I got older, my disability did stand out to peers. Arthrogryposis limited me and i knew it. Once age 12 hit, I became very self conscious and began to hide myself. I learned to except it, sat one the side lines smiling (when yet inside I was screaming with frustration) and cheered those who could do it. In my heart I know that I am fearfully and wonderfully made!
Ellie is granted a gift, and that's the gift of life. She has an amazing family, a mother who loves her unconditionally from birth and before, a father who adores her and wants to be her hero, and a brother who loves her in every way; as well as God who has, and has had her life planned out. She is a miracle. A masterpiece.
May she grow up, and look back on her childhood and see what an amazing life she really has.
Mrs. Katie, you are wonderfully mother and I have absolutely loved watching your Ellie grow up and will look forward to seeing more of her years.
Love and prayers to you and your family.

Erika Minich

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