Thursday, February 14, 2013

Once Upon a Time...

there was a little girl...
and her mother knew that someday she would be Queen.



Some of you may already know but for those that don't...
I am blessed to be the incredibly proud mother of a special needs child.
My daughter Hunter is blind with cerebral palsy due to her suffering a massive hemorrhage at birth...
when her and her identical twin Haley were born 13 weeks premature due to Twin to Twin Transfusion.
And though it's much more complicated...the easiest way for me to explain that puts it in terms most can understand...
they were one step away from being conjoined.
I was a very severe case and everything that happened was set in motion before I ever knew I was even going to be a mother...
it all lay with the timing of the one egg becoming two lives.

3 Days

There's an incredibly long story with it all...
95 days in a NICU...
how she was never supposed to survive the night much less the last 15 years...
how there was so much damage that the entire left side of her brain is gone...
along with portions of the right.
How when she finally came home she was supposed to only be coming home to die...
a failure to thrive.
She was supposed to be a fussy and inconsolable child...
100% care around the clock.
Never able to eat...
much less feed herself.
Never able to speak...
much less say "I love you".
She was only supposed to "exist"...
and then not for long.

4 1/2 months


But those doctors...
well...
they just didn't count on my Goose being as determined as she is.
Though by the time she was released and went for a follow up with her retina specialist a few weeks later...
I think he at least had began to get the measure of her because he stood in the middle of his reception area where everyone had gathered around hubs and I to look at our tiny babies and announced to everyone that there was not a single medical reason for Hunter to be there...
that she was only there because she was "too damn stubborn to give up".
His words...her truth.
Yup...
she's her mother's child.

Hunter and Haley...1 1/2 yrs.

Fast forward 15 years...
she can walk with the aid of custom braces and a special walker that gives her support...
and a little coaxing doesn't hurt.
But since we would need a home the size of The Biltmore...
or no furniture at all in our present one...
at home she hangs on like a little monkey and we carry her from room to room.
She will only eat if she feeds herself...
refuses any help of any kind...
and since she has a huge aversion to cold and liquids...
she eats mainly finger foods.
We go through about 10 bottles of V-8 Fusion a week to give her fruits and veggies...
that she is also able to drink all on her own with a straw.
And guess what?
She is amazingly healthy!
Speech was something no one ever expected because the portion of the brain that controls it was destroyed with the hemorrhage...
but she talks.
She's echolectic...
which means she echoes a lot of what she hears...
but she can now answer "yes" or "no" when we ask her a question.
When it's someone's birthday...
she sings her own spirited version of "Happening Birthday" (and yes...I know it's "Happy" but she sings "happening" and we just go with it :) )...
though she also always sings "happening birthday to Hunter" regardless of whose day it is...
but it doesn't matter because everyone looks forward to getting serenaded by her on our special day.
When she's having a bad day...
or is just in an extra silly mood...
she tells everyone to "go away".
She loves to yell "Help me Daddy"...
her favorite line from Finding Nemo in case you're wondering.
And she thinks her daddy hung the moon...
the stars...
and all just for her.
She's not fussy or inconsolable...
she gets in trouble for laughing too much at school...
and if you ask her how she feels...
she will tell you...
"Happy".
And then she will sing the sweetest words ever spoken...
"I lubba you".

Hunter, Haley and Robert '03

She has a smile that will light the darkest night...
a giggle that is so musical that I know it's the sound of angels.
She loves everyone and asks only for love in return.
She is heaven on earth.

2007

I could talk for hours about my Goose...
telling her story...
ER visits and surgeries...
close calls.
How blessed we are to have her...
what an absolute joy she is...
fear...
elation...
disappointments and triumphs...
how many tears I've cried...
but I won't.
Not today.



Today is about friends.
And family.
But you had to know a little bit about the why before you could understand the how.


Hunter attends the school for the blind...
and each year at this time they have a fundraiser...
Prince/Princess for the younger children...
Queen/King of Hearts for the older students...
and $1 will nominate anyone.
Half of the proceeds are donated to the American Heart Association...
the other half is used for the Junior/Senior Prom committee for prom and senior trip because they want each child there to have as many "normal" life experiences as possible...regardless of financial ability.
She was Princess of Hearts when she was younger...
and has the tiara to prove it *wink*...
and this year she was nominated for Queen of Hearts...
and since she is the Queen around here...
this mama knew Goose needed her crown!
Now this is the only election where buying votes is legal...
and each vote costs $.25...
and the one with the most votes...
wins.
So when they told me someone had nominated Goose...
this mama goes into action...
because there is NO such thing as too much pride when it comes to her...
and I put out the plea.
And have been crying ever since.

I have been blessed many times over...
in so many ways...
in this life of mine.
An incredible husband who loves me in spite of all the many...
well...
I like to refer to them as "fun surprises" even though I'm pretty sure he doesn't always see them my way...
but he does love me!
4 amazing children.
An incredible extended family.
And friends.
I hit the jackpot with friends.
Near and far.
And it's those that I want to talk about.
When I put out the plea to crafty friends that I have met in forums and on blogs in the last couple of years...
and I didn't even come close to getting to all of them...
about this mama wanting a crown for her girl...
the response was so immediate...
so overwhelming...
that I literally have cried for 2 weeks.
If someone had told me a couple of years ago when I started making cards and blogging that I would someday call people I've met online some of my dearest and most treasured friends...
I would have told them to get some meds because they were certifiable.
But 2 years later...
I do.
I am blessed because I have crossed paths with the best of the best...
the most amazing and incredible friends this world has to offer...
and all because of a little rubber, a little ink and colorful paper.
Who would have ever guessed that stumbling upon this little hobby would lead to such riches?
And though my bank account may not coincide with my heart...
I AM rich.
I wasn't born to wealth...
I drive a Ford and not a chauffeur driven Rolls.
I have a mortgage that unfortunately the bank expects me to pay each month.
I am the maid.
Going to the grocery and stopping for gas scares the absolute bejeebers out of me and my bank account...
and I cry when all the kids need new shoes at the same time...
but I have the best life.
A home that is full to bursting with love and laughter...
family and friends to keep me in line and catch me when I fall...
and in all the many mistakes of my life somewhere...somehow...
I did something so right...
I was chosen to hold a little piece of heaven everyday.

I drown in this wealth that is my life.

2011

And today because of this blessed life...
because of all these wonderful, amazing, incredible, extraordinary friends...
you know who you are and know that I love you with all my heart...
a mama's wish came true...
a little girl got her crown.




Once...
when the girls were much younger...
Haley was trying to figure out the "twin" thing...
and asked why God made 2 of her.
My answer to her was...
"Because God knew this life was going to be so big...
so incredible...
so special...
it was going to take 2 of you to live it".
After the phenomenal outpouring of love for my Goose from friends all over the country and beyond...
I think I was right.





















41 comments :

  1. Yay!! She looks so beautiful in her crown! She deserves it...she is a queen! Such a beautiful and touching story. Thanks for sharing it with us. You're the best!!

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  2. Renee I am sitting here crying my heart out! What a wonderful story of love and family and hope. I am so happy that Hunter got her crown that she so rightly deserves. She is so beautiful. Hugs to you all and Happy Valentines Day my friend.

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  3. Renee - I love you. And your kids. And I am lucky to call you a friend as well. Hunter is beautiful! Give her a hug from your WV peep!

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  4. OMG, this brought tears to my eyes, Renee! What a special honor not only for you but for Hunter and the rest of your family. I'm sorry I missed reading your blog about your fundraiser. You are one special Mom that's for sure. What a fabulous "once upon a time" story! TFS, Renee.

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  5. Oh, Renee, this post has me in tears! What a special girl you were blessed with!

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  6. Renee, thank you for choosing to share you and Hunter's incredible journey. It's amazing how a special needs child can teach such beautiful lessons in life. We were blessed to have a sweet, special needs grandchild even though it was for a brief time. We learned the true meaning of love and compassion. Hunter is also blessed to surrounded with a supportive family. Your daughter is indeed a queen. Hail to the queen!

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  7. wow Renee, I am so touched at reading your story, thanks for sharing! She is the Queen of Queens, a beauty who is perfect! I can really tell by reading your storyr in your that you really do have a piece of heaven here on earth...wishing you and your family many blessings!

    hugs *~*

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  8. Beautiful post today Renee - I swear you missed your calling as a writer and I pray that someday you will sit down in front of your PC and start your incredible life story. If one post can put me on an emotional roller coaster of joy and strength, to the worry of loss that you overcame.... I just can't image what you could do with pages and pages. Your a wonderful person and I am blessed to have you in my life. Hunter looks beautiful in her crown - all is right in the world again!

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  9. Just beautiful! What a wonderful family you have!! Hunter's crown is awesome!!

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  10. You ARE so blessed, and I had the chance to see this first hand but I also know that your family is even MORE blessed to have YOU in it, Renee!

    I am thrilled beyond belief that she won this crown. Did she love everyone clapping for her? Did she love dancing?

    I loved seeing all the photos of Hunter and the kids over time - so beautiful. Just so beautiful!

    Happy Valentine's Day! xoxo

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  11. Renee, this is so beautifully written. I loved every word. Congratulations on Hunter winning the crown. How precious.
    I remember when you first started blogging. Reading your posts were such a breath of fresh air. They still are. Can't wait to meet you in person someday. I just know it will happen.

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  12. Hello, Doll! You are blessed for certain, and you bless the lives of all the people you touch. I can say that with certainty. So happy to call you friend.

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  13. Oh my gosh, Renee. What a beautiful and moving post. And, your queen is so beautiful. How did I not know you were involved in a fundraiser? Too bad for me. You are seriously the world's best mom.

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  14. You always make me laugh or cry and today it was both! I am so happy for Hunter! She looks beautiful in her sparkly crown...what a wonderful event and please tell her how happy I am for her, and you too mom!

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  15. Renee, she is just as beautiful as her mother! You are both very blessed and us all!

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  16. Happy Valentine's Day, dear friend! Hugs to both you and Hunter and thanks so much for sharing Hunter's special day. She looks so beautiful in her crown! What a wonderful blessing she is and how fortunate she is to have such an amazing mother. I am always in awe of your beautiful writing and today's was even extra special. How lucky I am that this shared hobby brought us together!

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  17. Reading your post has brought tears to my eyes and heart. What a beautiful girl, beautiful family, and beautiful mama! You are truly blessed with all the riches of the world. Thank you for sharing your once upon a time story!

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  18. What a beautiful story. Definitely one of a mother's love.
    Your daughter is so beautiful; both inside and out.
    Although i don't frequent your website as often as I should, I love your writing style. Today's post was no different.
    Probably your best piece.
    I wish I had known about your fundraising. I would have contributed in a heartbeat.
    Enjoy the happiness of today. may there be many more.

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  19. Sob… sob and sob some more not because I am sad but because you are both so amazing …! Your twin blessing ! I loved your post and the pride you have for your family. I am so happy for all of you that Hunter was crowned. As she should be. How was it that I missed this, is it too late to contribute? Maybe I missed a post or email. Happy that it all came true. I loved learning a bit more about when the girls were born. I love the way God blesses us, and we just don't know it at the time. You know I learned that lesson too. Thank you for filling my heart with love of God and your story! Hugs!

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  20. What a beautiful, beautiful post! (I cried myself through it!)
    Huge hugs and congratulations to Hunter and her Mom!

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  21. It's not often I have to reach for the tissues when I'm blog hopping Renee...what a beautiful daughter you have and she's so lucky to have you as her Mum...thanks for sharing....you really have a fantastic talent for the written word. Let us know when you write a book one day!

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  22. She is one of the most beautiful girls I have ever seen. I am truly inspired by you and your Goose. I'm so glad she had a great time at the dance! xoxo

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  23. What a beautiful post my friend!! Congratulations to Hunter!! You are an amazing mom and I am so blessed to know you!!! Thanks for sharing your story!!

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  24. Thank you SO much for your sweet comment on my blog. I found it early this morning and was delighted to hear from you. Then I went back to your blog to see what you have been up to and, well, I'm very disappointed to know that I was not contacted to participate in fund raising for Hunter. The tears that I am still sniffing away as I try to write this are for the pure joy of a mother's heart for her child. She is a beautiful queen. You are a beautiful queen mother. I'm glad we met on line and still hope we will meet in person sometime when I make the trek back to Tennessee.

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  25. I loved this post! Thank you for sharing it! And I love how you described the "twin" thing to Haley.

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  26. Renee, such a beautifully written post. Thank for sharing this story of triumph, joy, blessings, and most importantly of love. Hunter is beautiful young woman both with and without the crown, and more importantly, as you have shown, she has beautiful spirit. Of course, your friends who knew of this campaign would donate to see a crown for Hunter and a a dream realized for her momma. Your own sweet nature, love, and generosity are evident in your posts and comments.

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  27. Renee, your post made me cry. What a gorgoeus girl, she looks so happy in her crown.
    Have a great weekend xx

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  28. What a wonderful post. Your love just shines through. You are all lucky to have each other. Hugs

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  29. Such a beautifully written story of your family, Renee! You are one amazing mama and that is one miracle girl you have there. I'm so happy for her! ♥

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  30. These allergies are killing me :) What a beautiful miracle you have! Thanks for reminding me what life is really all about..

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  31. Such a heartwarming post (and I'm not crying - honest!). Your daughter is so beautiful, but that's no surprise - her mum is beautiful inside and out! Thank you for reminding me what is really important in life. Hugs xx

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  32. What an amazing journey for your family Renee. Hunter is beautiful. I, too, wish I had known about the fundraiser. Your heart of pure sunshine always jumps OFF the page. I will be praying that that you guys have a sweet year of blessings. Life is always about perspective. Thank you. HUGS!

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  33. Renee, how did I miss this post. I just cried reading Hunter's amazing story. I am so happy to hear that she finally got her crown and what a beauty it is. Hunter is so pretty and I am sure she had a fabulous night as queen. I am truly honored that you let me be part of this special event, it was a real blessing to be able to help fulfill your Goose's wish.

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  34. Thank you for sharing your story, I am amazed by your strength! What a beautiful testimony of a mothers love, a child's strength and a powerful God ;).
    Be blessed!

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  35. Renee, I don't know you (yet!) but I want to thank you for sharing. I lost my two granddaughters to twin-to-twin transfusion 3 years ago, next month. Like you, they were nearly conjoined, and didn't survive till birth. I didn't get to see them or hold them, but i know i will see them again, one day. I'm so glad your precious Goose got her crown, and that all of your children have you for a Mom. Blessings to all of you.

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  36. Renee...Hunter is beautiful AND she has a beautiful mother!! I too, smiled and cried reading this!! You are both Queens in my book!! And, like Jeanne said...you have a wonderful way with words....you should write a book!

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  37. What a lovely, lovely post, Renee. Thank you for sharing your story. It touched my heart and made me smile. Hunter is so beautiful. I'm glad that she got her crown and your wish came true. You are so blessed to have each other!

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  38. Oh my heavens, Renee, did you have to make me cry right here at work, where I should be "working" instead of "reading blogs"? What a beautiful story and post, and I feel blessed to have gotten a chance to know Hunter a little better today. Congratulations to her (and her proud mama) on her crown. She is one beautiful young lady, and you are one incredible mother!

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  39. Aw, Renee, thanks for sharing your beautiful Queen with all of us!

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  40. Beautiful girl, beautiful mum, you my dear, are a blessing.

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