Make-A-Wish Breakfast

I had the pleasure of speaking at a Make-A-Wish breakfast sharing how the wish we received impacted our family. Who knew nine years after my son was born, I’d be speaking before 90 people.

Though I am planning to share, in greater detail, about our wish experience in my book, A Miracle In My Living Room, I thought you would appreciate reading my speech as a preview. Enjoy…

My name is Evelyn Mann. My son received his wish in 2008.

To understand the impact of this wish on our family, I’d like to share a bit of my son’s story.

When I was pregnant, my husband & I were told my son could have 4 different potential diagnoses. With the exception of one, they were all “not compatible with life.” 

The news was dire, but we pressed on.

My son Samuel, who’s name means God has heard, was born on August 2^nd, 2005 at 5 pounds, 12 ounces and very much alive. However, he needed a tube to help him breathe.  In his second week of life, we received his diagnosis; Thanatophoric Dysplasia Dwarfism. 

Thanatophoric in Greek means “death bringing”.  Surviving birth is a miracle. Samuel is the only survivor in Florida and only 1 of 6 survivors worldwide I’m aware of.  The primary challenge for these children is not their dwarfism but their restricted lung capacity.

Within weeks, my son had a tracheostomy placed in his throat and a feeding tube placed in his stomach. Not knowing how long Samuel would live, we were encouraged to celebrate every moment of our son’s young life.

After six months at St. Joseph’s Hospital, Samuel came home to 24 hour nursing care. He was taken to doctor’s offices by ambulance.  My husband & I never left the nurses alone so we could be there in a case of emergency.

When Samuel was about 2 years old, my husband suggested we take our son to the park. The look on my face must have given him my answer.  Questions whirled in my mind. What if he gets too hot?  If some emergency happens, what will we do then? So I kept saying no.  

When Samuel turned 3 years old, he was nominated to receive a wish. Maria Jameson, a Make-A-Wish volunteer and Joe Pearl, the father of a wish child, came to our home to assess what wish would be granted.  They asked many questions about Samuel’s interests. I shared Samuel enjoys balloons and the huge fish mural painted on the wall in his bedroom.

A few weeks later, Maria & Joe came to our church fellowship hall to announce Samuel’s wish. They brought lots of balloons and an envelope revealing we were going to SeaWorld.

Before we knew it, the time came for us to go on our seven day adventure. On a cold day in January, a limo pulled in front of our home to transport us to Orlando.  Such a big limo for a little guy with dwarfism!  We filled half of the huge limo with our luggage & Samuel’s medical equipment which included his ventilator, suction equipment, oxygen tanks, ambu bag and back up batteries.

We were driven to Give Kids The World Village in Orlando, a resort for wish families staffed by loving volunteers. We were given our own villa as well as tickets to not only SeaWorld but to all the other theme parks as well. What a surprise.

Each day, my husband & I would venture out with Samuel several times. At home, it was overwhelming to go out once a week to visit Samuel’s doctors and now we were leaving three times a day. We learned very quickly, we needed a check list to be sure we didn’t leave any of Samuel’s life-saving equipment in the villa.

We visited SeaWorld, Disney World, the Rainforest Café and many other attractions but a couple of moments stand out.

While at Disney, I needed to change Samuel. My husband waited outside while I walked down a long walkway to find the ladies room.  Once there, I laid Samuel down and then reached under the stroller for a diaper. I search everywhere and didn’t find a diaper. I look at the mom next to me changing her daughter. In my desperation, I ask her for a diaper. She graciously offered me one.  Later, I laugh. We have all of Samuel’s medical equipment but forgot the one thing you should never leave the home without…a diaper!

Another time, we were deep in Disney World as I was pushing Samuel’s stroller near a water pond. I stopped, listening to the hum of Samuel’s ventilator and looked out over the water.  A thought of panic overtook me. Are we crazy doing this? What if something happens? How is an ambulance going to find to us here? I turned to look at Samuel and found him sleeping.  Everything was fine.

It was during this wish, I discovered that being pushed out of my comfort zone was not only good for me but for Samuel as well who was discovering a whole new world he never knew existed. He saw dolphins close up, had pictures taken with Mickey Mouse & Goofy, and enjoyed his first merry-go-round ride.

Yes, it was a vacation but it was more than that for us. It was a training ground, teaching us how to live a more normal life with a medically needy child.

A few weeks after we came home, my husband again asked me, “Can we take him to the park now?” My first impulse was to say “no” but then I remembered our trip to Disney. “Yes, we can go.”

And go we did. To the park, to Lowry Park Zoo and the Florida Marine Aquarium.

My son is now 9 years old. He is still a little guy at 18 pounds, 25 inches but he has a big personality with a smile that melts hearts. We just returned from vacation driving 4,300 miles taking Samuel to Niagara Falls and Washington, D.C. among other places. The genesis for this trip began five years ago when we received an amazing wish.

I’m looking forward to sharing these experiences in a book I’m writing called,  A Miracle In My Living Room. Plans are to complete the book by next year.

I’d like to thank Make-A-Wish for impacting our family in such a dramatic way. It really made a world of difference. Thank you for listening to our story.