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Old 08-09-2012, 08:52 AM   #76
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Old 08-09-2012, 09:11 AM   #77
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Old 08-09-2012, 12:12 PM   #78
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Man, looks like she didn't enjoy that at all huh?
And I think I've "gone all out" when I put balloons on the mailbox... I bow to the master of birthday ceremonies! Lovely job!
Karen (the momma) Ian (the daddy) William - 8 (the Cars boy) Matthew - 6 (the all out Disney NUT)

Trick or Treat Trip Oct 11-16th 2014
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Our kidney-versary trip - celebrating one year anniversary of kidney transplant!
kidney-versary trip 2011

Kidney-versary trip 2011
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Old 08-09-2012, 03:34 PM   #79
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Originally Posted by AmberGreenawalt View Post
Today is Savannah's 4th Birthday! Every year for my each of my children's birthdays I write them a letter and make them a video montage with photos from their previous year of life. I thought it would be appropriate to post Savannah's birthday letter and video here ...

Sweet Savannah girl, you turn four today. Four fabulous years old.

I’m not sure how that is even possible.

As I sit and write this letter to you, I feel a lump in my throat, tears stinging the back of my eyes and I wonder if the space in my ribcage has enough room to contain my love for you.I’m remembering the day you were born; It was an incredible day, one of the best of my life, and I remember every moment like it had happened just a second ago. Before you were born, I felt like I knew you already, and when you were finally here, I did. I knew you; I could see you, you were my cells, my heart, my light, the very breath in my body. Born three weeks before your due date, at 6 pounds 7 ounces, you were my smallest baby , yet your presence in my life has been enormous.

That August morning I nursed you snuggled against my chest soaking up your sweet face, your impossibly long lashes, your perfect little mouth, your small fingers and ten tiny toes. I held you close, breathed in that sweet newborn scent and just let the happy tears flow. My perfect package of heart wrenching charms, my baby girl. You slayed me from the start Savannah-- I fell completely, head-over-heels in love with you the instant I met you, because to know you, is to love you.

I know I say this with every letter but it never ceases to confound me how four whole years could have slipped away since those first moments together. Of course what I didn’t know then was the kind of change you'd bring into my life and my experience of motherhood. It was a change so drastic it rocked my world and shook my very core. And now, just look how far you have come.Just look at the lovely, lively, little lady you have turned into. I can only say that I have been more amazed by you as you have grown. The awe has never worn off, each day has brought more...More amazement in the unfolding gift of who you are, more amazement that God in His graciousness trusted me with the privilege of being your mother.

You, My Love, are this bubbly beautiful, silly, sunny little pixie of a thing who seeps life and joy and a spirit of graciousness into our family. You are spirited, independent, affectionate, bright, boisterous and, at times, a total stinker. I love these things about you, these things that make you who you are, these things that make you so very “Savannah”. You are my little baby-loving, art-creating, memory-making, card crafting, oh-so-dramatic, kind, quirky, crazy-smart, wild, wonderful, precious daughter!

You are such a piece of work! The things you say and do are positively nutty. You don’t even try to entertain us or make us laugh. You are just you, and your levity is contagious. You play for joy and I find myself lost in your world of make believe listening to your energetic stories of princesses, fairies and alligators- a perfect blend of sparkle and spunk. Much like you. You carry on elaborate conversations on your “cell phone” and you and Siennah play mommy so often that I cannot even tell if you are talking to me or her half the time. You take your dramatic roles quite seriously. May you hold onto your glorious imagination and incredible tu-tu dances for the rest of your life.

Your favorite color is pink but sometimes, purple. You color like no child I have ever seen and never go outside of the lines. You love music and dancing and clothes. Everywhere we go you compliment people on their “nice shirt” or “pretty shoes.” You are such a fashionista and it drives me slightly crazy. You totally know how to rock a tiara and sword fight at the same time. You are one of a kind, my dearest sweetest most colorful Savannah.

I love your every expression and gesture. When you speak each muscle in your body is on stage. Your eyes grow double in size. Your arms navigate your words through sweeps and claps and pointing. You are so incredibly dramatic. It's simply fascinating. And you have a way of articulating that is all your own. It’s some quirky cross between a Jersey-Boston-British-Carolina-Pee Wee Herman accent. And I am in absolutely no hurry to correct your misuse of pronouns. Your consistent us of “we” instead “our” and ‘us.” Or the way your switch “am are” for “I am.”

These little bits of your babyhood will probably disappear this year and I find myself wanting to write down everything you say, record every conversation we have, photograph your every moment; I want to freeze time. That’s the blessed curse of being a parent; that feeling of living in a bittersweet space between the ache of the memories of baby and childhood, and the excitement for the next milestone, the next stage of your evolution.

I look at you and I simply can not believe my eyes at how much you have grown. For so long we have fought for every pound and inch of you and this year your legs stretched out like a piece of laffy taffy--you are my little willow of a girl with lithe limbs and golden curls that now hang to your shoulders. But you still have those same cheeks like apples, same dimpled smile, The one that when paired with your impish grin makes it impossible to keep a straight face when disciplining you. Then there are those those big brown eyes that only just settled into their color this year. Perfection.

Yep, I love everything about you no matter what I may say under clenched teeth and furrowed brow as I clean up your umpteenth mess of the day. You have certainly become more mischievous. I can now almost see the wheels turning in your brain as you think through whatever your next naughty activity will be. You are brazen, speak your mind. You want what you want, when you want it. This has led to no shortage of epic, and I mean EPIC battles with myself and your siblings. But you three also delight in each other. The fierce love and loyalty you share runs deep as the oceans. It is authentic and powerful, immeasurable and magical. It is a beauty to behold. Their world, just like mine and Daddy’s would not be complete without you. You're always there with a big engulfing hug or a kiss to cheer someone up. You heal with your heart, you light with laughter, you spread joy like a little trail of fairy dust behind you. Thank you for loving so good, so big, so pure.

You are delicate and fragile as a butterfly yet bold and resilient, independent, strong, spirited, dare I say, stubborn...but if I had to pick just one word that describes you at 4 years old it would be…Precocious. Followed very closely by funny because you my girl really are a riot. The things you say and do keep us in stitches. You don’t even try to be funny or make us laugh. You are just you, and your levity is contagious. You have the most infectious laugh so forgive me if I cannot stop tickling you just to hear it over and over again. It is truly music to my ears. It is as if every giggle stamps my heart with a little piece of you. You illuminate every room you enter with the happiness you radiate. You don’t just walk into the room---you saunter. With one hand on your hip and a purse slung over your shoulder.

Random mothers at preschool stop to ask me, "Is she yours? She's just so... cute." Strangers peer out of their car windows and smile when we make our weekly pilgrimage to Target. At the grocery store elderly shoppers stop to observe you singing in the aisles, your repertoire includes everything from “Soundie” Music and Disney Classics to Adele. You’re the life of the party dear girl and I completely admire your gumption.

Everything you do, you do with copious amounts of rainbows sashaying around you. You even handle the hard days with such grace. You’ve met every challenge great and small with a wellspring of courage and determination. I am thoroughly in awe of your grit. Your tenacious spirit. Your bravery. Your spunk! May you keep that wonder and that fearlessness that inspires you to keep trying.

You finally understand that you have Mitochondrial Disease. And sometimes it brings you down. But it never defines who you are. Through you, and with you, we have learned to savor and enjoy each day we have been given, as we truly don't know what may lie ahead of us. I am constantly amazed at how someone so little can impart such big lessons about life, love, and God's incredible grace.

I can’t begin to describe to you in words that will cling long enough to your ears how much joy you have brought to my life. More than I ever dreamed possible. The truth is Savannah we would not be the family we are today without you! From the moment you entered our life, you have made it better. Every dream I ever had my entire life about what having a daughter would be like just can't compare with the greatness you turned out to be.Being your Mom is not just diaper changes and time-outs now. It's wanting to explain the world to you. To teach you kindness. To tell you why things happen in a way that makes you want to be good and loving. To show you by example that your confidence is your power...that the world is your oyster and you are its pearl.

I have so much to teach you, to share with you, to show you, that a lifetime doesn’t seem enough.I wish for you to live a life full of beauty, love, peace and joy. I will do everything within my means to ensure this happens. I look forward to watching you grow and change from the sweet little lady you are today into a thoughtful, intelligent woman.

I have no wish for this change to happen quickly!! There is just so much about the girl you are today that I want to etch into my soul forever. I feel like I can’t hold you close enough. In fact, each night, when I put you to sleep, I look at you and wish the time wouldn’t go so fast, that I could live in slow motion and linger through your childhood a little longer. Daily, I plea for you to please stop growing up.You are so used to hearing me say this selfish phrase that you just flash me that dimpled smile, shake your head and very matter of factly reply, “Yes Mamma! I want to grow up for I could get married!”

And oh what a wedding you have planned out! Once again you tell me all about the white dress you will have and the high heel Jimmy Choos, your long veil and spar-ka-lee tiara. How you will get married at Disneyworld with everyone you love there.

And oh how I clamor for that day too. So alright my girl, go ahead and grow up-- If you must. I know you must. I feel fortunate to spend these years in your company, loving you and helping you learn. Teaching you to believe in yourself as I believe in you. To never let go of your own sense of what’s right, what is fair and what is real – Most of all don’t lose your sense of wonder. You have an amazing way of knowing about the world even as you have much left to learn about it. This is what you teach me – how to live in earnest.

There is absolutely nothing you can’t do. So dream big. Dream colorful. Dream magic. Dream beyond the stars. Everything big starts as something small. Have Faith. Leap high and go for it! Don’t worry about the little things. Know that dancing will almost always make a girl feel better – so feel free to twirl for happiness when you are feeling down. I will be happy to hold your hands and spin with you. Never forget how to let go and enjoy a good spin! And remember, I will always be here for you, cheering you on. Your biggest fan.

God gave me three beautiful, amazing children and you, the baby we were meant to have..., I know you were hand picked for us, for the world. For you are going to do great things, my girl.Savannah - I hope you never outgrow that special little something that makes you sparkle. And on this day, your birthday, I celebrate you. I hope that you know how wonderful you are, how lucky I am to be your mommy and what you mean to me.

There’s only one way, to say those three words FOUR you, so that’s what I’ll do…
I love you.
I love you.
I love you.


Savannah's 4th Fabulous Year Video
I read the first paragraph and started crying. I am going to have to wait until I am home to read this not on my break in my office
Latasha and Eddie
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Old 08-09-2012, 11:24 PM   #80
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Originally Posted by carebearkidney View Post
Man, looks like she didn't enjoy that at all huh?
And I think I've "gone all out" when I put balloons on the mailbox... I bow to the master of birthday ceremonies! Lovely job!
Thank you! I'm an event planner by trade and crafting cheap parties from a pack of carstock and some tulle and tissue paper brings me great joy. But really the beautiful thing is that, all these kids care about is that they feel celebrated. With balloons on the mail box or a homemade cake or a Target cake it doesn't matter in the end. It matters that they are loved and valued...and that they know that. xo
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Old 08-10-2012, 01:10 AM   #81
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Looks like she had the perfect princess party! She is absolutely beautiful!

PTR: Trevor's Star Wars Make A Wish Trip

TR: Trev's Star Wars MAW trip

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Old 08-10-2012, 08:58 AM   #82
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Originally Posted by carebearkidney View Post
Man, looks like she didn't enjoy that at all huh?
And I think I've "gone all out" when I put balloons on the mailbox... I bow to the master of birthday ceremonies! Lovely job!
This is soooo me, and totally made me ROFL.

Originally Posted by AmberGreenawalt View Post
Thank you! I'm an event planner by trade and crafting cheap parties from a pack of carstock and some tulle and tissue paper brings me great joy. But really the beautiful thing is that, all these kids care about is that they feel celebrated. With balloons on the mail box or a homemade cake or a Target cake it doesn't matter in the end. It matters that they are loved and valued...and that they know that. xo
Exactly! You put that so well Amber.

I loved seeing all the pictures, I was watching the live updates on FB, and it looks like everyone had so much fun! You did a great job!

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Old 08-10-2012, 08:36 PM   #83
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What a beautiful party! What a beautiful family,what wonderful smiles, fingers crossed for a well deserved wish trip!
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Old 08-14-2012, 09:08 AM   #84
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Good morning! Tell the princess that Prince Charming is less than 2 hrs from home :-)
On the Go Mommy to Phalen (2/05) & Finn (6/08) - my two little Disney Maniacs! Happily married to DH since 7/02!
We can NEVER get enough of the Mouse!

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Old 08-19-2012, 04:54 PM   #85
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That birthday party was amazing!!

And your letters to your kiddos - and the videos - make me cry EVERY SINGLE TIME!!!!!

But they are happy tears! I am so happy to see her walking around! I remember when you were not sure that was ever going to happen! You guys have come a long way!
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Old 08-20-2012, 08:06 AM   #86
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Dismeet and MAW update

Thank you for all of your kind words about Savannah's birthday party.

We still have not heard anything from the Make A Wish Foundation. One of my good friends who is an oncology nurse reports that our chapter is waaaay behind on wishes.

Unfortunately we've approached the 6 month mark. Meaning we are nearly 180 days out from the dates we would like to go. February 23rd-March 4th (our kid's school vacation week.) If you are a Disney nut then you can appreciate what that 180 days date means in terms of planning.

We are going to go ahead and book what we were hoping would be the extended portion of our trip (March 1st-4th) and will start making ADRs daily on August 28th. Since we won't have a reservation number yet we can't do the start of our trip "plus ten days." I can only make ADRs for one day at a time as each day becomes "180 days" out. I'm hoping things like pre-park opening breakfasts are not all snatched up by the "plus ten" crowd. Thankfully free dining hasn't been released during this period so that could be on our side as any free dining period is notrious for thin ADR choices.

I'm going to book a Cinderella Dinner and Bibbity Bobbity as these are things Savannah would love to do on her wish trip but like I said I don't know if it's going to get to be a wish trip.

If the trip doesn't end up being Savannah's Make A Wish then we will need to make a reservation at some other hotel for February 23rd-March 4th. We'd probably try to use some Hilton Honors points staying at one of the downtown Disney hotels or rent some more DVC points from someone else if we can get them cheap enough. We're only booking 3 nights for the extension and it's not worth it for us so travel down to Orlando and try and speed through the parks in that time.

I don't like booking with such uncertainty but know that we need to do something as rooms that "sleep 5" for relatively less money on property go fast. One of the places we are looking at booking is Bay Lake and all they have left are the upgraded Lake View. I am nervous because once we pay for DVC points rental the money is non-refundable. The dates could be changed up until the end of June (the DVC owner's use year end) but the points once bought are...bought.

Please send up a prayer or two that we hear from Make A Wish SOON and that we can get the ball rolling. I'm feeling really discouraged.

On a happy note... We participated in the Charlotte Disboutiquer Meet this past weekend. On Saturday we had a "Fabric Shop Hop" where we visited several area fabric and thread stores and also enjoyed lunch together. Then in the evening we met up at a place called Lake Wylie Bowl and Bounce. Most of the gals did an American Girl outfit exchange. It's unbelievable how talented these ladies are!

I LOVED getting to meet some long time friends for the very first time in person. Some of them have been a part of our life since making outfits for Sebastian's Big Give and it was because of their amazing outfits that I was inspired to get into sewing myself. These women have watched Savannah grow up from the time I first posted pictures of the day she was born on Sebastian's PTR. It was really cool to see how much their children have grown too. I also LOVED making new friends! A few live not to far from me at all. It's great to know that other Disney custom sewing nuts are nearby!

Here are some photos of the great group of Disers that met up in Charlotte...

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Old 08-20-2012, 11:50 AM   #87
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Amber it was so great to meet you. Your children are adorable, sweet, loving. Well I could go on and on. The letter you wrote to Savannah is the sweetest thing I have ever read. Your parties well all I can say is WOW!!! Oh and will you help me with Karly's in November I really hope you hear something soon about the wish trip.
Me: DH DS (7) DD (5)
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Old 08-20-2012, 06:39 PM   #88
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Amber, It was awesome to get meet you and your beautiful children Saturday! I've followed your blog for a while now, since Marianne posted the link. I will be following along for Savannah's PTR and I hope that MAW gets back to you soon.



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Old 08-26-2012, 04:32 PM   #89
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I had Savannah at her Pediatrician's office on Friday and her doctor said she had not yet recieved any forms via fax (or otherwise) from Make A Wish. What gives?!

It was over THREE weeks ago that I had called (and followed up with an email --that got no response) to give them Savannah's Pediatrcian's office number and fax number.

We are going on three months now since our initial contact with Make A Wish and the eligibilty forms have yet to make it into the hands of her doctor --who is more than willing to sign them!

Should I call again???

I hate to be a pain in the you know what but man, this is discouraging.

Meanwhile, Tuesday is 180 days from when we plan to go to Disney.

We have booked what we hope will be the extension to the Make A Wish trip from March 1st - March 4th in a one bedroom at Bay Lake Tower. I am renting DVC points from a friend of a friend. The gal that we purchased them from used to volunteer every Thursday at Give Kids the World while she was in the Disney College Program. This really warmed my heart.

Our plan if we never hear back from Make A Wish is to use Hilton Honors points to stay at one of the Down Town Disney Hilton brand hotels (Double Tree or Hilton). Don't know how long we should wait before making that reservation.

Praying, praying, praying...
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Old 08-26-2012, 04:43 PM   #90
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Hi Amber!

I'm hopping aboard; so glad it's at the start of the ride!

All your kids are so sweet; I just want to eat them up!

Good luck with your ADRs next week.

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