Tuesday, June 5, 2012

Makin a Wish

A few months ago this arrived in our mailbox

It arrived right side up of course...but I...for the life of me...cannot get it to flip.

It was humbling.
It was overwhelming.

But it was also a boo-hoo worthy reminder.

A reminder about how fragile he is.

if you are a fan of A Christmas Story,
he is Frageeeeelay. 
We think he's Italian.

But he runs.
He jumps.
He swims.
He plays.

But he also has what equates to a ticking clock inside of his chest.

His valve will fail.

At some point.
It will fail.

And that will be his life.
His whole life.

Replace and fail.
Replace and fail.
Replace and fail.
And until technology can catch up to itself and not require him to undergo open heart surgeries periodically for the rest of his life
this is what we live with.

Each checkup we wonder.

Gracious we love this man and his careful care of our son!

Each surgery a risk.

A risk.
To this incredible life.
So here we are.
Healthy, happy and about to embark on a trip to the Happiest Place on Earth.
We've never, ever been...any of us. 
So all tips and suggestions are appreciated!

To say he is a wee bit excited would be understating it substantially.
The countdown is on.
We leave in about a week.

And we can't wait.

I intend to blog the trip each day
I also intend to scrub the bathtubs in my house
and I intend to plant a garden
and vacuum the car
and formulate a plan for world peace
never mind.


  1. What a blessing! Laura had a MAW trip last year and it was nothing short of amazing. MAW does an incredible job of making the entire family feel so special! A tip? Sit back and enjoy the ride. Ya'll will be spoiled!

  2. Super exciting! It is the happiest place on earth:) We live in Orlando and love going to Disney. I am assuming that's what you're talking about. I hope y'all have a wonderful time.

  3. And I would add, "find a home for every waiting child" but that one I think you just may accomplish!! You are an amazing woman. I hope your family has an amazing trip together. Enjoy every minute and at least share some pictures with the rest of us!

  4. Have a blast!!!! Can't wait to see those daily posts ;-)

  5. Sonia, that is so awesome! Do you get to stay at Give Kids the World? We are waiting until October, and heading down for a week with another organization. Of course, Elisyn would pick that with all the princesses. I wish you all an amazing blessed trip! Lots of photos right????

  6. If you have any specific questions about it let me know. I worked guest services for a couple of years. Most of the problems are already taken care of for you. You don't have to wait in any lines the entire day and the village you stay at is spectacular. I would recommend do the luau or the hoop de do revue with a group of boys. They would really like them. I will say that every cast member is specifically trained to look out for the make a wish buttons and to go out of the way to make each encounter special. You will have a fabulous and relaxing time. I will also say that the best spot to view the fireworks is from the roof of the contemporary resort.

  7. Have a wonderful trip!

    (Oh, when you get around vacuuming the car, can you come over and do mine? LOL)

  8. I am glad you shared that. I always wondered what it was like to care with someone that had heart issues. What specific kind of issue is it? If you don't mind my asking.

    Also, how very exciting!! We went for the first time ever about 3 years ago. I had the time of my life. Literally. Patrick Swayze song and all! It was AMAZING!! And since we are kindred spirits (or at least it seems so to me) I will share this with you. There were so many tips out there that my brain almost exploded. I wore myself out trying to map out the very best plan to enjoy all the fun stuff and get to the best places at the best times. Yada, yada, yada. Finally, I felt I was missing the point and Shaun and I decided to just go with the flow. (Which ain't easy for me.)

    So each day we would just decide where we wanted to go and we just floated around and let the kids have full rein. They. Loved. It. We loved it. There was never a dull moment. And we explored a lot of places. We probably didn't see it all but somehow it felt like we did. I will say Epcot is super hot! Like heat hot during the day and character dining is TOTALLY worth it even if your kids are older. That's all I got. :) Hope you guys have an incredible time.

  9. Oh, also, I forgot to mention, I cried when we left. No, I am not a bit ashamed. It was my first time ever and it was just as awesome for me. I got my picture with Cinderella to prove it. ;)

  10. Have fun and enjoy what you all deserve!! We just got a National Parks Lifetime Pass for our entire family since Bryson is permanently physically challenged! We were pretty excited about that and have already used it twice in the past two days!

  11. My friend JoRie got me hooked on your blod around the time Josh got home from sugery. I have been praying for all of you ever since.
    I have tons of advice for Disney World if you need it. valigirl2010@hotmail.com

  12. My son and grandson were guest, at the Make-A-Wish village in Orlando this spring! They loved it and skipped going to Disney many days due to the activities and fun things to do at the village. At Disney they could do the fast pass lines without waiting and received many extra treats while there. Truly a once in a life time visit for all that go! They hope to one day go back as a volunteer! Blessings to you and your family as you make this wonderful trip!

  13. Sounds like you won't have to wait in line much, but the spray bottle fans are nice to have there. The ones at Disney are about $16, but you can get them at Wal-Mart for about $6 or less. Have a great time!

  14. We will be there at GKTW the 12-19!!!

  15. Katherine HanleyJune 7, 2012 at 3:39 PM

    It will be like nothing you have experienced. My young cousin, Ben, is fighting lukemia and MAW took everyone to Disney. My aunt, who I went to Disney with 30 years ago in a lime green winneabago, said she could never go back! MAW treats everyone like royalty and you will enjoy every second of it. So excited for all of you!

  16. You all so deserve it!! Yay!! So thankful that you have this opportunity!

    HAVE FUN!!