When you wish upon a star…I can hear the little green cricket singing to Pinocchio, just like I heard it the first time as a small child.  I would continue my childhood believing that a wish is something that you have to have courage for. Courage to hold hope in a wish.

In my adult years, the term wish would change in language for me, but not in its meaning.  A wish now is an act of faith.  Faith – the act of believing something is possible even without any assurance.  Faith has been such a painful journey.  Learning to walk by faith would come in the most heart-wrenching ways 14 years ago…

Cystic Fibrosis, 2 words that forever changed our lives.  The emergency life-saving surgeries, the hospitalizations, the IV scars, the missed ballet recitals, the 504 plan, the dealing with nonstop medical paperwork, the weeks of IV Meds, single parenting, isolation, countless DIOS (bowl obstructions) episodes, NG tubes, the hours of chest physiotherapy, the “sick” plan, COVID…I could keep going

Little did I know that this last year would be a a year of firsts as we journeyed as parents of a 14-year-old beautifully, headstrong, competitive, smart, and sassy young woman with cystic fibrosis.

TRIKAFTA

A gene therapy medication that Ezrah started taking a year ago has changed so much of her story

Ezrah has not been in the hospital or had a major lung infection since starting this gene therapy.  We have had countless colds and sicknesses in our home, that would normally knock her out for months, making her miss so much school and deal with rounds and rounds of antibiotics.  But what happened?  Nothing?  No infections.

Her lung function has increased.  

She is growing and no longer stalled out on the growth charts like she was for 2 years before starting TRIKAFTA.

We haven’t had to follow a sick plan in school in over a year…ask all her teachers in elementary school…they will all tell you of the months Ezzy missed school each year in their classes.

We found out last year that Ezrah was approved for her wish, thanks to the Make-A-Wish Foundation (MAW).  It was something we had known ever since her diagnosis of Cystic Fibrosis.  But it was something we felt she should wait to do until she was older and understood the gift that was being given by MAW. We felt it was time to finally do this experience.

Last week we returned from our trip to the Bahamas.  Atlantis Island to be exact.  Ezrah’s wish was to go visit their outdoor aquarium and waterpark with her family. Some of you might remember the weeks every year she has had to sit out while her class had swim lessons (a vital program for our coastal island kids).  

Every single moment of the trip to Nassau was magical and God orchestrated and ordained.

Our MAW rep Dorothy was there to help us every step of the way, getting 7 Harneys passports.  She assisted us along the way when we ran out of space to put all the family members’ names in documents…because you know…the standard family isn’t larger than 5 people…she was just a phone call away when I misplaced our lodging documents during one of our many legs of our journey.

Veil made sure that the family was given a daily report of how many more days till we left for the Bahamas.  Being the youngest of Harneys, she feels the pain of people coming and going for work, school, and fun trips.   Veil’s excitement was everyone’s focal point as we traveled with our pint-sized boss who kept us all in check as she was waiting to see what the Bahamas looked like in real life.  

Alaska airlines and their stewards and stewardesses were so kind to our family on each of our flights.  It was a day and a half of travel…red eyes still suck, even when you don’t travel with babies anymore, btw.

To say that the resort took our breath away is an understatement.  You couldn’t even walk to the pool outside our window without walking through a cave that had the cutest turtles swimming in it.  Each day we would find the tiniest turtle, which we named Veil and each evening we would say good night to the tiny turtle.

Our kids in true Alaskan fashion closed out the beach.  We had to grab our stuff and start walking away to finally get our 5-pack out of the warm 8 pm water.  They eventually met up with us on the trail back to the hotel.

The water park did not disappoint and we all knew that it would be impossible to peel Kyrene out of the slide that took us under the water with the sharks.  When we couldn’t find Ky…we all knew where she was.  Ky was in heaven, the animal whisperer…I have heard countless times since we have returned that she is going to be a marine biologist.

Ya’el showed us all up and went on the scariest slides before her older siblings…yes…before Cayden, Ezrah and yes even me…actually boo deciding to do the slides I swore off, made me face my own fears and scream my way into the abyss.  Ya’el also showed me how much of a sweet tooth she has thanks to the buffet and the endless amounts of sugar she shoved in her face.

The lazy river was our favorite ride and the one we started and ended our days doing.  It would be the only ride tiny Veil was approved to do with the whole family.

I didn’t know I could squeal and laugh like a teenager again with my 16-year-old son as we tackled rides like the surge or the drop.  Cayden became the 3rd parent and often gave Richard and I the chance to go to rides together like 2 teenagers.  I hope that Veil can look at these pictures of her and her brother and see how special it is to spend time with him as his years at home are quickly passing by.

I forgot how touching it is to see my 5 pack inseparable, a unit, playing, laughing, and loving each other

The Bahamian sun is intense and we went through so much sunscreen that we had to buy more…2 bottles of spray sunscreen were $68, and I laughed out loud when the cashier told me the price…Harneys didn’t waste a drop!

Finding shells and snorkeling with the fish was our most peaceful morning spent on the beach while we waited for the water park to open.  We got to meet with locals on each beach trip.  We tried fresh coconut, got our hair braided found out how incredibly salty the Bahamian sea is to our eyes!

Our playtime with the dolphins was an encounter, not one single Harney will ever forget.  Did you know that Dolphins are good at giving high fives?

As our quick 5 day stay at the resort was coming to an end, I saw the sadness start to creep in.  We had been spending each day to the fullest.  I would reluctantly set my alarm each night to ensure we didn’t sleep the sun away.

On our last night I  walked close to my daughter who has become a woman overnight.  I asked her how she was processing the trip.

Thankful we had someone come and help us process as a family before we left, the significance and magnitude of this trip.  It gave us language, so that when we found ourselves in moments that cause big emotions, we had words that one another could understand.

My daughter’s words shocked me.

“Mom, I feel like this trip wasn’t just for me…it was really for you and Dad”

“Um…ok…can you explain”

“Well, you and Dad had to deal with a sick baby, you guys were the ones stressed out with trying to keep me healthy, trying to be in the hospital with me and take care of my siblings…I can’t imagine what that would be like”

Kids are so resilient.  I am constantly in awe of how kids persevere and face hard things.

Ezrah, when she looks back at the hard, she is thinking about others, her parents, and not how hard her journey was.  She has told me since “It was all that I knew – I didn’t know a different way”.

Some of the hardest seasons, I wrote about here on our family blog.  I couldn’t see the light at the end of the tunnel.

Some of those really hard seasons…I worried they would scar her heart, just like the scar across her stomach that reminds us of the quick action the Seattle Children’s surgeon took.

Today, so many parents like us with children with Cystic Fibrosis are facing a future that looks very different than the one they said would make us “stand over their grave” .

Ezrah’s recently had appointments with her team and they had tears in their eyes as they sat across from a young woman who now runs her doctor appointment, while I sit back.  She gives a thorough explanation of her health and brings up her things to discuss with her team.  She has become her own advocate.  

Ezrah is thinking about college and seriously hopes she can get a scholarship to play ball.  

I never knew that when I wished…when I dared to have faith that God could take my daughter’s story which started in fear and tears, He would turn it into miracles and wonders.

Ezrah’s fatal disease still has no cure.  TRIKAFTA has not been approved for all gene mutations of Cystic Fibrosis.  Ezrah has the most common genetic mutation.  We know someone who had to stop taking this life-saving medication because the side effects were too extreme.  Ezrah is monitored regularly to make sure the side effects don’t cause any damage.

We are rejoicing in the gift that TRIKAFTA has given our girl this last year and can’t wait to see what other parts of her story will change as time goes on.  We are going to continue to rejoice in this year and half of health!

We so many times said out loud “Thank you Make A Wish” on our trip as we got to experience things we would have never been able to do.  

We are the recipients of a blessing because people care about children who have to face fatal and chronic illnesses. Ezrah may not remember all of the hard parts of her disease, but I do hope that she remembers how incredibly resilient she has been through this all.

Because of people and their generosity and love for others, Make A Wish happens for so many families. This trip was a blessing to us that a small blog post will never fully be able to convey.  But I hope that you can sense what we all felt and still feel today

GRATITUDE