Day 145, A Twist of Fate

Sunday, August 14th, 2016

It was 2 years ago, on this very day where Matt, the kiddos and I were celebrating our “biggest and grandest” summer family vacation yet — our first official trip to Walt Disney World with all 4 children! No cares in the world and the only thing we had to worry about is, what should we do next? And on this particular day, Sunday, August 14th 2016, was our extra special day because it was our Magic Kingdom Day. Extra special because before we could make our grand entrance to said Magic Kingdom, we had to prepare ourselves (and by ourselves I mean the children) appropriately. So, earlier that morning, we had all three of the ladies get all dolled up at The Bibbidi Bobbidi Boutique. The pampering and primping took three already beautiful girls and transformed them into three beautiful princesses! And what of Ryan you ask? Don’t you worry — I had him covered. He was transformed into Prince Ryan! Now we were ready for our official magical day to Magic Kingdom. And Magic it was . . . at first . . .

After meeting Ariel, Belle, and Cinderella, it was time to have an actual proper royal lunch at Cinderella’s Royal Table where we would not only dine on delicious fancy foods but where we also got to meet so many other wonderful princesses. Towards the end of our royal lunch, Matt received a phone call and excused himself while the rest of us finished our delectable desserts. Unbeknownst to me, it was during this particular time frame that our magical world would burst.

2 Years ago on this day, Sunday August 14th, Matt’s younger brother passed away unexpectedly. It was devastating and it was gut wrenching. When Matt pulled me aside, outside, after our special lunch to tell me the news, it felt as if someone poured ice water over my body. It made me numb. Still to this day it almost seems insanely comical that his passing happened on the same exact day where our family was celebrating in a place that is known as “The Happiest Place on Earth” — this happiest place on earth with all four of our children, surrounded by a glorious day of sunshine, laughter, and magic — now turned to darkness, crying, and sadness. It only takes seconds for a perfect situation to turn devastatingly awful.

Fast forward almost 2 years later . . .

On March 22, 2018 Amber had emergency brain surgery because of a previously unknown tumor that burst. I was too shocked to register anything at that time and knew I had to keep moving forward, for Amber’s sake. Then, 4 days later, when Dr. Martin told us the results of the pathology report: Glioblasoma Multiforme, Grade 4 cancer; I physically felt (again) that same ice water being poured over my head and body, that same icey-numb feeling I felt when Matt told me about his brother . . . and if that wasn’t a punch in the gut enough, hours later, Amber would be having her second brain surgery. For a family that has NEVER had as much as a broken anything — here is our youngest daughter having her SECOND brain surgery. Our family’s lives have changed dramatically forever; our youngest daughter recovering from not only a left side weakness due to the massive stroke from the tumor but also, and worst of all, she is now a child with a life-threatening disease. A terrible and devastating situation. However, for devastating situations there are glimpses of hope and happiness. For Matt and I, we found our deeper Faith. We also found a community of family, friends, strangers that went out of their way to help us, support us, pray for us, and encourage us when Matt and I were in our darkest place. Now fast forward to today . . .

Tuesday, August 14th, 2018

And here is the Twist Of Fate. Two years ago it went from a magical perfect day to misery and grief. Today however, Amber’s devastating situation brings us to paradise — O’ahu, Hawai’i (thanks to Make-a-Wish) and coincidentally enough, back to Disney. Although Amber’s future is unknown to us, what we do know is that God has her here, with us, TODAY. And today, we happen to be in a place that seems to be as close as we can get to Heaven on Earth; golden sun, sea breeze with swaying palm trees, tropical plants and sweet-smelling flowers, white sandy beaches with the most beautiful turquoise ocean waters you have ever seen . . . and the smell of the island, oh — perfection! Sweet and exquisite!

And even though right now we live with the shadow of concerns over Amber’s future health, what is very clear to us is that all of this is in God’s hands, it always has been. Nothing is perfect in this life; not a big trip to Disney World with all the frills and not one’s health. And although those things may seem meaningful and seem like everything at the moment, they are only bonuses. The real meaning is how you choose to live this life at every moment with the people you love.

Matt’s brother’s passing was dark on a bright sunny day. Amber’s health, although dark in the beginning seems pretty bright; pretty hopeful — especially with that golden Hawaiian sun shining down upon her. God’s sun.

19 thoughts on “Day 145, A Twist of Fate

  1. It melts my heart to know that TODAY you are happy, rejoicing in God’s beautiful world with this miracle child that is your daughter. Enjoy

  2. I just am in awe of all of you and my heart is with you in this journey
    Love and prayers to you all may your travels be nothing but happiness ❤️❤️❤️

  3. Wow….This post touched my heart big time & here is why….
    On this day, 3 years ago, August 14, 2015 my son, Justin married Mary, the love of his life in the gorgeous mountains of Utah….
    Today is their 3rd anniversary, and I’m full of mixed emotions, but mostly, I am grateful that they have this anniversary to celebrate..
    Justin has a similar diagnosis as Amber….His came on January 31st…He, too, had 2 brain surgeries….He also had 30 radiation treatments & for him, 40 Chemo treatments (orally)….He continues on a cycle of 5 Chemo treatments a month through October or November….
    We live one day at a time & know that every day is a gift from God….Some are good & some aren’t, but we are grateful for all of them….
    I am so happy for your family to be in Hawaii. I was able to travel there in 2013 & came home with a renewed spirit and a grateful heart…
    Enjoy your trip, & please know when I pray for my Justin, I always include a prayer for your Amber too…And I pretty much pray all day long….

  4. Thinking of you all Caron, Matt and Family, especially today! Love your posts!

  5. Beautifully written, love you all! Praying fervently still, and know that Amber has an angel forever cheering her on!
    Love,
    Rachel Postovoit

  6. So beautifully written… please know we pray for Amber always and Ned is still a part of our heart daily. Positive thoughts and prayers for you all and enjoy your Hawaiian adventure.
    Wendy DAgostino and family

  7. Thinking of Amber as always. Her presence makes the Hawaiian photos even more beautiful, thank you for sharing. Love and hugs to Amber, and you all. ❤️

  8. such a beautiful place to be with such a beautiful family,. as we know, life is far to short and we never know what is around the next corner. Enjoy the time there with your family, we are all thinking of you and all that you have been through. Take care, have fun, take a lot of photos!!

  9. ❤️ thinking of you guys ! Amber looks great! Hopefully your having fun! See you soon ! Can’t wait to hear all about the trip.

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