Matter of Heart
Minnie, Memories and More
Thursday, April 19, 2012
Funny how it gets me sometimes. Always when I don’t see it coming.
I had a woman contact me a little while back. Her husband is Transposition of the Great Arteries like Evie. He’s 30 plus years old. The oldest guy I “personally” know with her heart condition. An inspiration for me to watch his relatively “normal” healthy life. He’s the dad of two kids. And was waiting for a heart transplant.
I hadn’t checked in in a while, so I popped over to their blog tonight and read that he received his donor heart.
…and there were complications.
and he didn’t make it.
Feel like the wind has been sucked out of me. I just sat at the computer and wept.
For the wife without a husband now trying to be both mother and father to these sweet children even as she suffers her own grief.
Granted, while his heart is similar to Evie’s, his surgery was performed many years before hers and progress is being made every day in the field battling this beast of CHD. But I see another fallen heart-hero and my own heart takes another arrow!
There are days the scary questions and future complications can be pushed to the deep recesses of my brain. Days when I can focus clearly on the now and how God has given grace for today. Days her bouncing curls and adorable underbite and incessant giggle drown out the disturbing unknown.
Tonight Im taking a deep breath. And going in to kiss her sleeping forehead again. But I am grateful all the more for the amazing opportunities the Lord has provided for her to live life to the fullest and for His showers of blessings in tangible ways.
Because she has qualified for Make A Wish, the organization contacted Wish families in the area and sponsored them to go to Disney on Ice last week. MAW is SO good to the families too! Big kids were in school, so C and I took and opportunity to take just Izzy and Evie on a little date.
A total treat.
Popcorn and all.
Awesome seats.
Woody and friends.
Moe’s lunch afterwards.
Memories. Savoring them!
Bonded Hearts
Wednesday, April 11, 2012
Our trip to Missouri was postponed earlier this month due to Abi’s appendectomy. But, the anticipation was SO worth the wait! I flew out with Izzy, Evie and Gigi to visit some very special friends that you may remember from here……..or here.
Our girls share special hearts….and special names!
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| The two Evie’s |
Between Faith’s mom (who is a fabulous photographer-mentor) and my clicking camera, it was a well documented visit:)
Maggie’s big brother Trent was a great sport about the 5 girls (age 5 and under) that occupied his home for 4 days!
There were certainly some “Hallmark” moments…
Upon our arrival at the St. Louis airport, Evie and Maggie spotted eachother from 50 feet away and went sprinting into eachothers arms where they embraced cheek to cheek and heart-to-heart for no less than a minute. It was PRECIOUS! These tow are like sisters….for so many reasons!
Then the next day about had Faith and I in tears. The girls were all playing dress-up in their room while Faith and I sat on the floor and visited. Maggie was wearing a v-cut low neckline Rupunzel dress. Mind you, we have had lots of discussions about how Maggie and Evie’s hearts are similar, and Evie has prayed for Maggie through surgeries, but somehow, she hadnt connected the dots…
Evie looked at Maggie and stared. She walked up to her and pointed at the silver scar peeking above the neckline and compassionately, inquisitively asked; “you have heart surgewy too?”
It was the first time Evie has ever met anyone she could “identify” with. The first time she’d seen another “zipper” on someone else. It was so dear…and sad…and sweet…and sobering all at once. The girls “compared” scars, and went back to playing the part of the princesses that they are.
These two. You cant help but be amazed when you watch them….these sweet girls who have beat all odds, endured unimaginable pain, been covered by uncountable prayers, overcome unbelievable hurdles and brought incomparable joy. Our “blue babies” shrouded in PINK! What delight to their momma’s hearts! Thank you Jesus!!
We packed about as much fun into 4 days as is humanly possible.
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| Gigi got LOTS of attention from Evie |
The St. Louis Zoo certainly left something to be desired in our tiny Columbia zoo….afraid Im spoiled now. Spent a beautiful day strolling the grounds and picnicking.
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| Our tired bunch doing their animal impersonations. |
Faith’s dad has ponies that were one of the highlights of the trip for Evie. “Papa” brought a miniature over for a ride and Evie just beamed the entire time.
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| Just her size!! |
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| Izzy’s turn on Gidget |
Bonfire, S’mores and a gorgeous sunset wrapped up a beautiful evening in “the country”.
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| Little Evie |
It was a treat to get to celebrate Maggie and Evie’s birthdays (these sisters have birthdays just a day apart) while we were there with a darling Minnie Mouse themed celebration. Did I mention, in addition to being an amazing photographer, Faiths mom SEWS? Aren’t these dresses cute?!?!
Maggie’s Make A Wish trip is in just a couple weeks, so Disney was an appropriate theme this year. Faith and I even got in a little “Pinterest-project” with this cute cake and monogramed cupcakes. FUN!
Thanking God for the friendships that transcend time and distance and the tie that binds our hearts in Him!!
…and for our precious miracles that remind us daily of His goodness and grace!
Make A Wish
Wednesday, February 22, 2012
~ A dream is a wish your HEART makes ~
She’s been through more trauma in her short life than most of us ever will, but those harrowing first days fade to the background when you see the bouncy, bubbly full-of-life sweet-heart that she is today. There are still the occasional blood draws and ECHO’s and talks of what future procedures may be needed, but there are many, MANY care-free days that her “condition” is overshadowed by the pink bows and mop of curls that bound through our life and make our hearts skip a beat!
Which is perhaps why I found myself sitting in the car at the bottom of my driveway crying my eyes out the day I received this letter….
I was in utter shock. The words “Your child’s doctor has found Evangeline to be medically eligible to have a wish granted” jumped out at me. It was a reality check. A reminder that we were in a club I really didn’t want Evie to be in. We’ve had lots of heart kiddo friends who have had wishes granted, but somehow I classified Evie as “over the worst”. The familiar fears and questions began to percolate as I mopped my mascara stained face with kleenexes and looked at Evie sleeping in her carseat in the rear-view-mirror. The letter sent me into a tailspin. I called my sister in tears. I talked to my mom. I scheduled a meeting with Evies doctor to talk about what qualified her as eligible.
One of my dearest heart-mom friends talked me through it reminding me of what our girls have endured that has brought them to where they are today. You need look no further than their horrific post-surgery pictures to know they are qualified “Wish Kids”.
“Pray about it and if its right, than relax and enjoy every minute of Evie being treated like a princess”.
Within less than 24 hours, I had a call from our Wish facilitator. I told her I was completely overwhelmed and needed some time to process. She graciously told us to call her any time when we decided we were ready. I explained my reservations because Evie is doing so well right now. She clarified that MAW is no longer just for “terminal” kids, but that any child who is facing a life-threatening disease or illness qualifies. Because of Evies complex defect which will be followed all her life, she has been approved.
Its been overwhelming really. All that any parent of a sick kid wants is for their child to be well….with every fiber of my being, I wish we’d never face another anesthesia or blood transfusion or overnight in the hospital or intubation. I wish we could erase the scars and memories. But God is about redeeming all things and we know Evie’s little life is on a path that He has prepared for her – come what may.
It was several weeks before I was ready to call our wish-granter back and plan a meeting. Completely humbled and overwhelmed, we are choosing to receive with joy this incredible gift and embrace the experiences, relationships and opportunities this gift has lavished on our girl.
Evie made her wish this weekend over tea and cupcakes on a rainy Sunday afternoon with sweet Miss Dana who took her time as Evie shared her Princess books and talked about her favorite restaurant; Chick-fil-A. 🙂
She was so cute during the interview which asked her favorite movie…favorite color, etc. She kept looking out for her big brother…”My favorite music is High School Musical, but Tristan no like it.”
She’s been dreaming big getting ready for this day. Daddy helped her print off some of her ideas and she’s been sleeping with pictures of African Safari animals, hula dancers and pink playhouses under her pillow. When it came time to make her wish, she took a deep breath…..
“I wish to go on a Disney c’wuse with a waterside and see da pwincesses“.
(Ever since she saw a You Tube video of the Disney Aqua Duck, she was sold!)
The facilitator asked her for a back-up wish (just in case) and she smiled and said,
“A swimming pool wif a hot tub“.
….so we’ll see….
It could be some time before details come together, but we are already excited about this new community and precious relationships that are being forged in the MAW family. What an amazing organization!
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| “When you wish upon a star your dreams come true” |
Four years ago today, our wish was coming true….we were bringing our miracle girl home from the hospital after her life-saving surgery. Every day since then has been an answer to prayer and we give the glory to the Lord for her life that has been sustained and the gift that she is each and every day.
What an absolute joy and delight to now see her wishes and dreams coming true!