Our Make-A-Wish Experience

How should a life be lived? People will offer many different answers to this question and some may even be too busy to be bothered by it.  But on one thing we should be able to agree — the need to laugh, smile, and enjoy our time with friends and family during our time in this world.

When I was a child, I first learned of the Make-A-Wish Foundation while listening to and attending sporting events.  I knew that it was a highly respected organization that helped to bring smiles to very sick children but I really did not appreciate the full value of what they did — not until we experienced it for ourselves.

We’ve got so many details, subplots and side-stories that we could easily write a book – in fact our daughter wants to do exactly this someday.  But for now, here is a shorter version of our Make-A-Wish experience.

GRACE

To help put everything in perspective we felt that some background could provide a better context for what happened.  Courtney was born in early 2001 with a birth defect called an omphalocele.  When she was born, her liver, bowels and other organs were outside of her body enclosed within a thin membrane.

While omphaloceles are not all that rare ( 1 in 5000), this one was especially unique because of its size.  She was a case study at the time for a “very large omphalocele” — there simply wasn’t enough room in her body to accommodate her organs.

In the first year of her life, she went into the operating room 10 times for major surgery – some planned and some unplanned.  Each time she went in for surgery we would watch the balloons on her cart fade as she passed through the operating room doors, and then the tears and long nervous waits would begin.

We were told on several different occasions that she did not have long to live – at one point her life expectancy was being measured in hours.  We were also told that she would never be able to walk, and certainly would be severely disabled her entire life.  One by one, Courtney would prove all these predictions to be wrong.

GOING HOME

Fast forwarding after about a year in the neonatal intensive care unit (NICU), the medical team was able to get a thin layer of skin to grow over the top her abdominal organs.  The abdominal muscles had been cut and/or pushed aside in previous operations so there was no protection for these organs beyond this thin layer of skin.  The best way to describe it is that she looked as if she were pregnant, with a protrusion that was about the size of a very large cantaloupe.

This protrusion alone made things very difficult.  The surgeon asked us to imagine eating a Thanksgiving dinner, lying on your back and then having a 50lb bag of sand sitting on your stomach.  This is not unlike what it felt like for her, with this constant weight pushing up on her diaphragm making it more difficult to breath.

When she was still 1 year old, she was released from the hospital with a trache, an oxygen tank, home nursing and much more.  After time and much physical therapy we were able to get her to crawl and then walk.  She was eventually mainstreamed in school and we had to be very careful to avoid any blunt force to her abdominal area.

Fast Forward To 2009

In 2009, Courtney had turned 8 and the medical team had decided that she had grown to the point where they could finally attempt to repair the omphalocele.  The vast majority of omphaloceles are repaired at much younger ages, so to repair one at this age was not only rare but considerably complicated.

Shortly after her 9th birthday in 2010, Courtney indicated that she was ready to begin her medical journey and wanted to have her belly “fixed”.  They would first insert saline balloons which would be slowly inflated over time in order promote the development of more skin which would be needed to cover the wound site.  During the operation, all her abdominal organs would be moved and repositioned within the abdominal cavity and then covered with porcine tissue (pig muscle).

To say that this would be extreme surgery was an understatement.  It would be extremely complicated and the risks were extremely high as well.  Her organs were not in the normal locations and each organ would have to be manipulated and repositioned the best they could.  Her chances of survival were documented by one doctor at 15%.  Courtney understood the risks and she asked us to work with the doctors to start this new chapter in her medical journey.  She was ready.

Life threatening surgery is never easy, but this time Courtney was no longer a baby, but a brave nine year old girl with whom we now had many priceless memories.  After the lead surgeon discussed the procedure with Courtney (and the use of the pig muscle) she said “just slap a couple strips of bacon on me and let’s call it done!”.

MAKING A WISH

When Courtney’s surgery was scheduled, an application was submitted to the Make a Wish Foundation and it wasn’t long before we heard from them.  The Make-A-Wish team was absolutely wonderful and it was such a joy to work with them.

They started and asked Courtney if she had any wishes in mind and Courtney didn’t miss a beat in saying that she wanted to meet Miley Cyrus.  The staff explained to her that while such wishes could be made, there was a long waiting list and that such requests could often take more than a year, if granted.

92% of parents saw their kids experience re-empowerment to take back the ability to make decisions in their lives, post-wish — The Make-A-Wish Foundation

Then they began to ask questions like “if you could go anywhere in the world, where would you go?”  Her answer surprised us as we had never discussed it with us.  She said that she wanted to go to Hawaii to meet a surfer dude, see a hula girl, see the whales and see a volcano.  Not only was her wish was granted, but an itinerary was made which included a whale cruise, seeing hula girls at a luau, and traveling to the big island to see the volcano.

OUR TRIP

We arrived in Honolulu in the evening and the next morning and we went downstairs to enjoy “breakfast on the beach” in Waikiki and ended up playing in the water in our street clothes.  It was a surreal experience having been driving in New Jersey snow just a day before.  The girls wasted no time in playing in the Waikiki beach.

The morning view of Waikiki Beach filled with surfers, as seen from our room’s balcony

Courtney and Brittney experiencing Hawaii for the first time

Welcome To Sunny Hawaii!

The next day we went out on a whale watching cruise which was absolutely amazing.  Not only did we see several whales but we saw a baby whale breaching with its mother, which the guides said was highly unusual.

The next day was an incredibly full day of fun and adventure.  We had plans for the evening in the SW part of Oahu, so we tried to work a few things in along the way.  We got up early and drove to the Dole Pineapple plantation, and went on a fantastic tour and then ended up getting lost in this giant maze!

From there we drove up towards the North Shore to have some famous Matsumoto Shaved Ice.  Below is me and the girls enjoying a shaved ice (the girls found it difficult to smile without sunglasses).

Hawaiian Shaved Ice

 

From there we ventured onto the North Shore and stopped in the first surf shop we encountered to explore, which just happened to be Surf N Sea — Hawaii’s oldest surf & dive shop.  Now, there was no surfing as a part of our itinerary, so we thought we would inquire and see if we could do something on our own.  We spoke to the manager and explained everything and he said “I know just the guy – hang on”.

89% of parents observed increases in wish kids’ emotional strength, which can help them improve their health status — The Make-A-Wish Foundation

“T.G.” was his name and he was the real deal – he had spent seasons living out of his van in Australia chasing after the best waves.  He drove in and offered to give the girls a free surfing lesson on  his day off!  Below is a 5-minute video of our amazing time that afternoon.

Pineapples, shaved ice and surfing.  Now it was time to drive down to the SouthWest corner of Oahu for an authentic luau to finish off the day:

Ready for the party!

Courtney and Brittney pose at the luau party!

There’s a bird on my head!

That was about as much family adventure and priceless memories as could possibly be packed into a single day.

On the day we were supposed to fly over to Hawaii (“the big island”) we couldn’t get out of our hotel.  There had been a 6.9 quake in Peru and there was a tsunami alert.  Everyone in the hotel had to say above the 4th floor as a precaution and no one was allowed to leave.

The beach was evacuated in anticipation of the tsunami, but one truck lost all the surfboards! Everyone nearby pitched in to help load the boards back on to the truck.

What was amazing was to watch from our balcony almost every single boat in Southern Oahu heading out to sea.  The ocean was just filled with hundreds of boats, streaming out one after another – a very unique sight.

It may be hard to see in this picture, but if you look close there are A LOT of boats heading out of Honolulu harbor to avoid the tsunami. This was early in the day so the number of boats was much greater later that morning.

Later that day we finally made it to Hawaii and settled in near the Kona coast.  The next morning we began our volcano adventure and drove up to Hawaii’s active Kilauea volcano.  Imagine waking up and watching sea turtles sun along the Kona Coast, and then a few hours later wearing a jacket as the strong cool and misty wind blew on top of an active volcanoes as you overlook the lava fields (later in the day we would be in a rainforest like tropic on the other side of the volcano).

75% of parents observed that the wish experience increased wish kids’ physical health and strength — The Make-A-Wish Foundation

We explored the steam vents, asked questions for the park rangers and had an absolutely awesome experience exploring this wonder of nature.

Courtney in the lava field!

The girls by the active steam vents on top of the active Kilauea volcano

Courtney and the volcano — with a double rainbow

Girls, volcano and rainbow

Courtney enters a lava tunnel

Then we grabbed dinner not far from the volcano, and then we decided to go back up to the volcano to see it glowing in the night.  On the drive back in we saw the most amazing thing….

A green light was forming on the horizon and as we drove closer, it became clear that this was a “rainbow” but since it was illuminated by moonlight it had a greenish glow to it — (almost like the Northern lights!).  We tried to get some pictures but we just didn’t have the right camera for these unique conditions.

When we got to the top we didn’t know how to describe what we saw.  Imagine standing on top of a volcano at night looking over a lava filled landscape with a huge green rainbow arcing over the horizon.  It literally looked (and felt) like a science fiction movie as if the “green rainbow” were the rings of a planet or something.  The moon was full and bright on the other side of the volcano.  It was an absolutely incredible experience which we will never forget and left us with a sense of awe and amazement.

97% of volunteers reported feeling more grateful and thankful as a result of helping to grant a wish — The Make-A-Wish Foundation

Thanks to the Make-A-Wish Foundation we got the opportunity to have an amazing vacation filled with memories that we would never forget.  Courtney vowed to return to Hawaii to take up surfing and her little sister vowed to open a beachfront restaurant on the same beach.

While the future was uncertain, each of us had a new sense of peace about us as we prepared to face this critical phase of Courtney’s medical journey.

SURGERY

In early July 2010, Courtney went in for her “big” surgery.  When Courtney was going under anesthesia her mother had her pretending to be on a Hawaiian beach and eating snow cones.  She had a smile on her face as she drifted into sleep.

The day of the surgery was very intense as were the following several days.  For most of the first week she was in a near-coma state — unconscious with no movement.  There were many medical challenges and many difficult balancing acts.

After about 8 weeks in the hospital Courtney was released and went home.  I can’t make this post and not mention how professional, helpful and generally outstanding the entire team was at Morristown Hospital.  We had MANY in-depth conversations with many medical professionals and were present for many of the AM rounds.

This was extreme surgery.  Very extreme.  And we have no doubt that our experience in Hawaii — thanks to the Make-A-Wish Foundation — helped to put Courtney in a state where she would be the most receptive to healing and recovery.

Courtney still has some challenges and minor surgeries ahead, but she is on a great trajectory and she will never forget the amazing experiences she had in Hawaii.

HELP MAKE A WISH

This is what the Make-A-Wish-Foundation does every day — putting smiles on the faces and joy in the hearts of children in very serious situations with very uncertain futures.  Hope, strength and joy is what they offer to these children in very uncertain times.

The Make-A-Wish Foundation is filled with outstanding people who absolutely love what they do, and to give something back and share in what they do is a blessing.

There are so many different way to donate to the Make-A-Wish Foundation including monetary donations (cash or stocks),  frequent flier miles, computer equipment, loyalty points and more.  You can also volunteer time and/or services or even the Adopt-A-Wish program where generous donors can choose a specific wish for which they will completely sponsor.

For more information on donation/volunteer options at Make-A-Wish, click here.

 

11 Responses to Our Make-A-Wish Experience

  1. Matt Cowger says:

    Kevin,

    Thanks for sharing this story – what an amazing experience for you and your family, and I’m happy to hear all of you seem to be doing well.

    I would love for Make-A-Wish to publish names of their donors that go to such lengths (like TG) to help – I would do everything in my power to make sure they get my business, congrats, tips, etc. whenever possible.

    Off to go see how I can support them….

    –M

  2. Kevin says:

    Thanks Matt!

    After being home schooled last year, Courtney is back at her school and just started 5th grade and she is super excited to be back with all her friends.

    TG and Surf-N-Sea were not directly affiliated with Make-A-Wish on this trip. It was a complete impromptu thing — we just stopped in, told our story and some special people allowed the magic to happen.

    I just realized I didn’t include a link to Surf-N-Sea in the website so I just added it now. Thanks!

  3. Friea says:

    Mike – I only know you via work and even then only from twitter. Am sobbing reading this on a plane far from home wanting nothing more than to hug my 4year old and her daddy and count our blessings.

    Such an incredibly hard journey but what an amazing girl and family you have. Sending many, many warm wishes your way.

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