Life with Cystic Fibrosis Q&A

Through this interviewing process I have come to learn a lot about my strong, courageous child.  This was an amazing way to hear Emma's heart from a new perspective.  I am grateful that God saw fit to give me a 12 year old daughter who is far beyond her years in wisdom, but is still able to be a normal preteen.  Thank you to everyone that messaged, text and commented with questions...enjoy a glimpse into our world...

If you could describe your CF Journey in a few words, what would they be?

Emma - "Difficult, fun, and adventurous!"

Lisa - "I have to agree with Emma, but I would add in that it has been life-changing.  CF is hard, period, but it has taught us the importance of living each day to the fullest, it has challenged our faith and showed us that God is faithful.  And it has challenged our family unit and reminded us, we are in this together and that has made us stronger.  CF has changed our life, and I dare to say...for the better!"

At what age did your family realize that something serious was wrong with Emma?  And before that, was she pretty much enjoying a normal life?

Lisa - "I knew something was wrong around the time she was two weeks.  She would throw up so hard she actually stopped breathing once.  Matt and I rushed her to the ER and we were told she was a perfectly fine and healthy baby.  She was ALWAYS sick, and I mean always.  Coughing, runny nose, congested.  She actually lived on a decongestant every day.  She would projectile vomit any time she would eat (like something out of a scary movie) and she had more 'dirty' diapers than any baby I knew.  I constantly took her to the doctor and told them something was wrong.  She was hitting all her mental milestones, but none of her physical milestones.  I was told I was a 'paranoid parent and I needed to learn to relax'!!  On New Year's Eve 2007, Emma had a rectal prolapse which caused us to take her to the ER.  It was there that a traveling doctor mentioned Cystic Fibrosis to us.  We were transferred by ambulance to Valley Children's Hospital in Madera, CA for further testing.  On January 2, 2008, Emma was diagnosed.  She was 18 months old.  So, no she definitely wasn't enjoying a normal life."

How hard is it for her sisters to deal with Emma always being sick and in the hospital?

Lisa - "It was hard for Emma and I to answer this one...so I asked Abby...Here's her response..."

Abby - "It's really hard.  The hardest part is not having you guys around to do the normal things around here.  I just really miss having you guys around.  There are moments where Emma and I just like to sit around and talk and I really miss that when she's gone.  I'm not normally too scared when she's in the hospital, unless she's having surgery or something like that, but we talk every night, so that helps.

This question is for Emma: Where do you find the courage to smile in almost all your photos?

Emma - "Well, it's easy!!  (said with a smile and a giggle)  I'm not worried about CF at that time.  I'm just living in the moment, I don't think about death when I"m smiling or anything."

This question is for Lisa: Where do you get your energy to be an amazing mom? (you are much younger than me, can you send me some please)?  

Lisa - "First off thank you...I definitely don't feel amazing or full of energy.  I feel worn out and exhausted most of the time.  I have learned to just keep pushing along though.  I have shared this before but the day Emma was diagnosised I was really struggling with God and why He would allow this illness.  After arguing with God, I stopped talking and finally just sat still...have you ever been freezing cold and had a warm blanket wrapped around you and felt your body relax?  This was the feeling I had at that moment.  I felt like God was telling me, "I'm not angry, I'm not punishing you.  I trust you."  From that moment, on January 2, 2008, I have walked in the fact that the God of the Universe TRUST me as Emma's mom.  Now I have made and will make countless mistakes along the way, but I rest in the fact that I was chosen for this job...I find strength, comfort and energy in this truth.  We have all be created for a specific task...Mine just includes taking care of a child with Cystic Fibrosis."

Will Emma be eligible for a lung transplant and will that help her?

Lisa - "At this time Lung Transplant is not even a topic of discussion.  Emma's lungs are functioning well and we are happy with her current lung functions.  Down the road, Emma may need a transplant but eligibility will be decided based on current infections, overall health along with many other factors.  Emma currently has a bacteria that does limit the centers willing to work with lung transplant, however, this is something we will deal with when it becomes necessary...Lord willing that's a very long way away." 

How is Emma doing now?

Emma - "I'm alright I guess...I suppose!  I want to play tennis at school.  I'm having night sweats but that is normal for me.  I'm sooooooo excited about the new meds that will take the place of my IV meds.  Like SOOOOOO excited!!!!  I'll be able to take showers every day, not do IV meds every morning before school, get to spend the night at friends, not have to always rush home when we are at the store, or anything like that!  But I am scared about how I will react to the new medicine, like coughing up blood or something.  That would be really scary."

Lisa - "From a clinical standpoint, Emma is doing average.  Her lung function did improve with her trip to Hawaii, but she has yet to return to her baseline.  We are beginning to feel we may have a new lower baseline for her.  Where this is frustrating, it is still high and we are thankful for that.  Emma is currently in month six of IV medications due to Mycobacterium Abscessus.  We are hoping to discontinue them this month and start two new medications in place of the IV's.  With that being said, theses are two new drugs, we have data on them, but not a lot, so we are hoping to see some success with them.  In addition to her battle with Mycobacterium Abscessus, Emma has an extremely high IgE (immunoglobulin E, which measures your overall reaction to allergies in your body).  This number should be 0-200.  Emma's has climbed to nearly 4,000.  During her last bronchoscopy, we learned that she is still battling an extremely rare black fungi.  Through my research I have learned that this rare black mold only effects approximately 27 CFers world wide and is the likely source of her high IgE, but until we can treat the M. Abscessus completely, we can't treat this fungi.  Our prayer is that these new medication begin to attack the M. Abscessus, so we can begin to treat the fungi.  Emma is also participating in two clinical studies right now, and we are honored to be a part of helping to make a difference for the future of CF."

What does Emma want to do when she is older?  College?  Career?

Emma - "Oh that's already planned!!!  I'm going to move back to North Carolina and go to UNC for college.  I'm going to study Marine Biology.  Then I am going to move to Hawaii when I have my degree, so I can go deep sea diving and take pictures of animals and then learn about new animals.  AND, I'm going to be a surfer all the time, when I'm in Hawaii.  Oh and a stay at home Mom, that goes deep sea diving!"

What's it like being so awesome?

Emma - said laughing with a huge smile "it's pretty cool, I mean, it's alright I guess.  You know how it be!  Just kidding, just kidding!"

What annoys you the most about having CF?

Emma - "There's no freedom.  It's like your trapped.  Like I can't do what most kids, well I can do what most kids do, but I can't run two miles and still be good, because my lung won't let me.  I can't even run a mile, I mean ooft.  Ummm, and I'm always making sure I'm healthy.  I feel like if people didn't know I had CF, then they wouldn't feel pity towards me.  Like for example, if none of my teachers knew I had CF, then I would just be the quiet kid in class.  But instead they make me move to the front of the class to be closer to the, and ask if I'm ok.  They don't do that to anyone else.  It's nice of them but I feel like they feel pity towards me, and I don't like that.  I don't want people to look at me differently.  I think 'Oh come on, seriously.  I don't need your pity. I'm basically just like everyone else!"

What annoys you the most about being in the hospital?

Emma - "The FOOOOOD!!!  Ugh it's disgusting!!!  At least we have Door Dash!!  But really it's probably knowing that all my friends are having fun and I can't do that.  I'm just stuck there seeing the pictures on Instagram...and that's like...ugh!!!  I have a phobia of missing out."

Lisa - "Definitely missing my family.  Plus the food, lack of privacy and sleep."

What annoys you the most about taking Meds?
Emma - "They are sooooo annoying!!!  I have to take medicine with every single meal I have, and I just want to eat and eat and eat and not take pills.  I also hate having to worry about how many calories I eat, so I make sure I take the right amount of enzymes.  And I hate swallowing all the pills I hate, they make me puke sometimes and that's not fun!  And with IV meds, we are always watching the time and rushing to get home to do them.  It stinks!!

Do you worry about your future?

Emma - "Sometimes, I do, sometimes I don't.  It just depends I guess.  Sometimes I worry that I won't live to have kids or live to see a cure for CF.  Or live long enough to see Ayva or Abby as adults, like to see their jobs or how the grow up to be Moms or Aunts.  Oh or that I won't live long enough to DRIVE!!"

What does it feel like to wear your vest?

Emma - "It's cool, I want the Afflovest so I don't have to worry about the tubing.  Then I can more and stuff.  I like making noises on it, it's funny.  But it's long, like 45 minutes.  It's boring, but I don't really mind it."

What's the worst part of IV meds?

Emma - "Having my port accessed so I can't take a shower everyday unless I'm wrapped up.  And having to get poked every week for labs.  And having to base my life around meds.  For example, during youth I have to stop and get hooked up and when I go to school I have the med ball in my front pocket just sitting there.  I don't want anyone to see if or for it to fall out, so it's frustrating."

Lisa - "They are exhausting!!  You are constantly watching the clock so that you stay on schedule.  It requires a lot of storage and organization.  But I am so thankful we have the ability to do home IV meds, and stay out of the hospital."

Best hospital stay?

Emma - she had to think about this for awhile "I think when I was in UNC and could order all the sushi I wanted!  I had like three California Rolls one time!!  I love UNC!"

Lisa - "This is a tough question!!  The time she was admitted for her 7th birthday was astounding.  The ways that people reached out to make her birthday wish of 100 cards come true, is still breathtaking.  We had two amazing stays at UNC with my mom surprising us for one visit and some of my good friends surprising us for another admission!!  We did face masks, bible journaling and drank lots of Starbucks, it made a hard situation better.  I think the best stays are when we can feel the love and support from friends and family.  They definitely keep us going!

Worst hospital stay?

Emma - "I feel like it was one of our recent ones.  I think our last stay, the most recent.  We had just got out of the hospital and then we had to go straight back.  So I had to miss everything for a month."

Lisa - "September 2011!!  Emma was five years old and was hospitalized due to failure to thrive.  She ended up needing her first sinus surgery along with the removal of her adenoids.  Then she needed a nissen fundoplication along with a gtube placed.  This was a long and difficult admission.  The next would be January 2019!  We spent the entire month in the hospital due to an insurance lapse...it was HORRIBLE!!"

Tell us about Hawaii!

Emma - "I don't even know how to put it in one word... there has to be one word that is is the most...most then glorious, more than WOW...more than that!  Bigger than epic!  It was just so amazing.  Soooooo amazing!!!!  I love Make-A-Wish, there was nothing that was complicated, everything was so nice, and we just kept going and going with things.  That was a good thing because, what if they only gave us one thing to do, it would have been boring.  But they planned everything out and it was so smooth, fun and perfect.  I loved everything about it!!"

Lisa - "I wrote a blog about our experience.  You can read it here: Wishes Do Come True "

How hard is it to be away from your dad and sisters while in the hospital?

Emma - "It's VERY hard, because I have noone to pick on except Mom and she gets offended hahahaha.  Just kidding.  But it's hard because I have noone, other than Mom, to hang out with and I'm just stuck in my room watching tv or something."

Lisa - "This is hands down the hardest part of being in the hospital.  It just feels like part of my heart is missing.  I have missed so many events for Abby and Ayva due to being in the hospital.  Thankfully, God has created them to be understanding and compassionate, but it is still hard for me.  As a mom, I want to be present in their lives and feel like I miss so much when we are gone.  It has also been very challenging for Matthew and I to learn how to communicate well while I'm gone and to still stay in complete unison when we are living two separate lives for weeks.  He basically becomes a "single dad" and manage everything at home, from making breakfast, lunch and dinner, to morning drop-offs and afternoon pickups.  He balances everything, plus working full time, with grace and love.  I couldn't be more thankful to be marriage to such an amazing man!!"

What would a normal, CF free life look like to you?

Emma - "I feel life would be so different.  I wonder if we would have ever lived in North Carolina or Texas.  Maybe we would have stayed in California or maybe we would have moved to like Montana or something.  It would just be so different and that's strange to think of!"

Lisa - "I have no clue...I'm really not sure how different our lives would be.  This journey has absolutely molded and shaped us into the people we are today.  I can't imagine what life would be like if this was never an issue for us.  I do know, I would love to travel more!!  Our life is planned around hospitals, medicine and treatments... so the thought of freedom from a medical perspective is hard to wrap my head around, but I would love to travel!"

Are you thankful for CF?

Emma - "Yes!!  People have been really inspired by my story and I have always wanted to be an influencer.  Plus I get lots of support and love from so many people.  I wouldn't have been given the chance to surf with Bethany Hamilton if I didn't have CF, so that's another amazing thing."

Lisa - "I hate cystic fibrosis in general.  I hate that CF is claiming the lives of children and young adults and I hate that Emma has to suffer from this disease, but with that being said, I am so thankful for all the lessons we have learned.  I am grateful for the friends we now have because of CF, I am humbled by the love and support we have received and I am astounded by the many. many ways God has shown His faithfulness!"

Would you change having CF?

Emma - " NO!!  Because it's a disease that's not really known.  Unlike cancer, CF is rare and unknown.  SO I want to be that person that puts it out there.  I know the movie, "Five Feet Apart" is doing that, but I want to be out there talking about it and bringing awareness!  I want to inspire people... I want people to realize they are special even if they feel different, or have a disease, or look different or feel like they aren't normal or anything like that.  I want them to understand that they don't have to feel different, they can be who they are, and who they want to be!!  Who cares what people think!  Most of the kids at my school don't even know that I have CF, they just think I am a normal person, because I never show them I'm different.  But as soon as I tell someone they act strange.  They're like 'oh my goodness I feel so bad for you' and then ask questions like 'are you gonna die' and I'm like 'yeah I'm gonna die, but you're gonna die, everyone is gonna die, it's just life.  There's nothing you can do about that.'  I want people that are struggling to understand they can keep going and to NEVER give up!!"

Lisa - "Well my daughter pretty much summed this up!!  No, I would not change her having CF...Emma's life has taught us about God's unfailing love and has given us an opportunity to share His love with many people.  We have learned how to endure and overcome so many obstacles due to CF and through each step, we have become stronger, wiser and more sensitive to others fighting battles."


Do you feel like you make decisions or act certain ways because people are watching you?

Emma- "Well doesn't everyone act different if someone is watching them?  I'm always going to be positive and I'm not going to just collapse with bad stuff, and say 'this is it!!!'  I just know the hard stuff will be over... for instance... it's only IV meds, it will be over in an hour and then I can go on with my life I'm not controlled by things, I can push through it.  That's just who I am, it's how I was raised!"

Lisa - "Overall I feel like in many situations, I stop to think of what type of example I want to be through it.  I also believe that anything put in front of us concerning Emma is an opportunity to share God with others.  So in those circumstances I am more aware of things so I can share them with y'all."

Who is your biggest influencer/Inspiration?

Emma - "Bethany Hamilton!!  She has been for about five years!  I want to surf, inspire people and tell people about Jesus!  I like everything about her and I want to be influence people like she does!"

Where do you want to surf?

Emma - "I'd like to surf Hawaii again, of course!!  Plus I'd like to try to surf in the Gulf of Mexico, since it's here in Texas.  And in Mexico.  I just want to everywhere that has clear water!!"

Best hospital food/Worst hospital food?

Emma - "UNC!!!  UNC has the best hospital food hands down!!  The had a 10 page menus with different types of food, like Chinese food, or sushi, salad bars or custom sandwiches.  They had burgers, fries, BBQ, man they had everything.  I miss it!!    And Texas Children's has the worst!  There is not much to choose from and it's all just gross."

Lisa - "I agree with Emma 110%!!  UNC has the best and most cost effective food.  Texas Children's has the worst and most expensive food."

Favorite Hospital/Least Hospital?

Emma - "Valley Children's is where I grew up, so that's kinda like my forever home hospital.  I liked that Kaiser, Los Angeles had an outdoor play area for me with bikes and stuff.  And UNC because they have the BEST food!  Texas Children's is my least favorite hospital because I'm locked in my room, and I can't order good food. Texas Children's doesn't give me places to go, except to walk in a circle or stay in my room.  It stinks, but I do like some of the nurses."

Lisa - "Valley Children's was our home hospital for so long.  It's where Emma was diagnosised, it's where we spent most of her hospital stays and it's where I learned the importance of advocating for my daughter and that nurses are the most amazing people in the world.  But VCH slowly began to decline and Emma's care was compromised.  So when we left, it was easy to say goodbye.  I appreciated Kaiser Los Angeles, they were helpful and compassionate with us.  I felt Emma was loved and that the doctor fully understood my expectations and made sure I was always comfortable.  UNC is where we finally received answers we had longed for.  It's where the pieces finally fell into place and I learned the value of our immediate family unit.  It was also one of the hardest hospitals for us, because we were across the country from our closest friends and family, so it felt very isolating.  Texas Children's has been wonderful for continuing the care started by UNC.  I have been happy with their ability to work together to find answers, but also challenged by the lack of knowledge regarding some of Emma's current issues.  And finally, Children's Los Angeles is the WORST hospital we ever went to!!  Many year later when I think of CHLA I literally get angry at the horrible care Emma received.  I think I have PTSD from CHLA!!!" 

Do you have CF friends in the hospital?  What's that like?  Special memories with them?

Emma - " YES!  It's really cool to me to have other CF friends because I don't feel alone.  My favorite memories....ummmm... wheelchair races with Jordan, but he died.  And Teresa that would do treatments with me, but she died.  And Kaila from North Carolina!!  I loved her, she always made me feel special.  She sent me cards and even fruit in the hospital.  Remember when we saw the butterfly at our hospital window after she died.  She was special.  Oh, and Macaela would do treatments with me too, doesn't she has a baby girls now? (yes, she sure does!)  It's really hard to loose CFers that I get close with.  I just hope they are in a better place.  The hardest part is thinking that it could be me instead of them...It's just really hard!"

Lisa - "We have connected with hundreds of CF families over the years, some in person, but most online.  I am actually an admin for a CF Mama's group of thousands of CF moms on Facebook.  Since we can never have our kids in the same room, it's hard to have a close relationship with them.  But the CF community is a tight community and I know that if I need to talk to people who truly get what I'm going through I reach out to them!!  They are my biggest advocate in my darkest hours.  I have rejoiced in triumphs with these mamas, figured out major issues with our kiddos while admitted.  I have prayed over treatments, transplants and basic life troubles with them.  These moms are my tribe (even though many of us have never met in person)!!  They are my friends, my family, my support.  Unfortunately, I have had to watch countless Moms and Dads say goodbye to their young children and it never gets easy.  Every loss we face, is brutal and rips a piece of your heart out.  You find yourself in a very strange place when you face a loss in this community...your heart breaks for the family and warrior you have come to know and love, but at the same time your selfishly breathe a sign of relief that it wasn't your child...yet.  I'm sure that sounds horrible, but it's the harsh, painstaking reality."

What is your daily routine? Is it hard to do?

Emma - "I have to take a bunch of pills every morning, along with IV meds, inhalers, treatments.  At night I have more pills, IV meds, treatments and night time gtube feeds.  It's not really hard, just more annoying that anything."

Lisa - "My daily routines consist of preparing everything for Emma... separating all her pills, mixing and preparing her IV meds, Doing her breathing treatments and CPT (Chest physiotherapy).  I also have to make sure everything is properly cleaned and sanitized, which takes a while.  I prepare all her night time feeds and try to make sure she gets all the calories she needs to thrive.  Thankfully Matthew helps anytime he is available, and her sisters are good about staying on her to take her pills, more like they annoy her until she takes them hahaha.  It's not hard to do these things, but it is definitely exhausting!"

Is it curable?

Lisa - "No.  Cystic Fibrosis is terminal.  Unfortunately, we do not have a cure at this time, but thankfully we have medical advance that provide treatments to help prolong life.  The average age span of someone with CF is 34 years old."

Is Emma taking Orkambi?

Lisa- "No, Emma wasn't able to tolerate Orkambi.  It caused her to have an extremely tight chest, making it difficult for her to breathe.  She is currently on Symdeko.  Things have been going well on it."

I'm sure living with CF has taught you all to re-evaluate your priorities and truly count your blessings, for the little things are often the BIG things.  So what are some of your new priorities... or even moments/occasions that get you through the tough times?

Emma - "My priorities are God, my parents, my sisters, the rest of my family and friends.  The things we talk about a lot is good memories like going to the beach an surfing.  Sometimes we talk about things we are looking forward to, but mostly we just remember good times."

Lisa - "I think CF has absolutely taught us to value each day.  We rejoice in the healthy days and pull together in the sick days.  We cherish our time together and do our best to make memories together.  During the hard times, we all lean on fond memories.  We think of happier times, and memories like time spent at the beach, on the lake, or things that make us laugh about each other.  We have learned to find joy in the simple things like chicken strips and tamales in the hospital on Thanksgiving, getting out of the hospital hours before Christmas Eve, birthday parties in the hospital, and just being together, period.  This last hospital stay, in January, thinking of Emma's upcoming Make-A-Wish trip helped us push through the hard moments.  We would talk about things we wanted to do, see, or eat!!!   We would imagine what it would be like to meet Bethany Hamilton, and I will say that our thoughts during that admission couldn't compare to how amazing the trip actually was.  I'm certain that we will talk about that trip for the rest of our lives.  My priorities are God, Matthew, my girls, my ministries at church, and the rest of my family and friends."

For Emma: do you have or would you want to plan to be a public advocate for CF?

Emma - "YES!!  I would like to share my story with others so they can learn about CF.  I feel like I am a good role model and I would like to encourage others to keep going and never give up.

What do you each like to do to stay busy in the hospital?

Emma - "Watch TV!  Netflix is the best!!  This last hospital stay I almost watched the entire series of "Friends".  I like to color, draw, and play my ukulele.  I spend mot of my time resting though."

Lisa - "I love to Bible Journal, paint, do anything crafty...actually, most of you would laugh at how many craft supplies I bring with me.  I have even brought a sewing machine before hahaha.  I read, watch movies and waste time on social media.  I also blog, write and try to entertain Emma."

Five Feet Apart

I thought I would take some time to express my feelings on this new movie and book...I have read the book and seen the movie.  I will also do my best to not write about any spoilers... in case you haven't seen the movie.

First, stop what you're doing and carve out some time to go support this movie!!  Supporting this movie, brings awareness to this horrible disease.  It also shows Hollywood that this community needs to have a voice in the world.

Real life CF: Before we could walk into the theater, we had to sit in the car, mix her IV meds and get them started so they could run during the movie!!  She also had to swallow five pills during the movie and then flush and hep lock her central line in the dark halfway through the movie!!  This is the reality of her life!!  She was also dressed in purple (Color of CF), and wore a face mask to protect her! 

Ok... let's dive in:

As the movie began it scanned Stella's hospital room, on her desk was a cup of pencils...the same Hobby Lobby pencils are currently sitting on Emma's desk in a cup...my tears began at that moment.  They continued off and on throughout the movie.  It was hard to not break into full ugly cry mode a few times.  Abby cried towards the end...and Emma...She cried a few times, but the ending really upset her.

Director, Justin Baldoni did a phenomenal job playing close attention to the smallest details. Details that would be overlooked by most people... things like the sandals next to the bed (Emma always has a pair next to her bed), the pills: there is a shot of Stella adding her pills to chocolate pudding...Emma has actually tried that hahaha...but the pills were actual medications that Emma takes!!!  She immediately noticed and commented on it.  The not so very cute but comfortable clothing, constant messy hair, the clubbed fingers, the Pulmozyme on the med cart, vest treatments, the dark discoloring under Will's eyes, for anyone who has seen Emma when she is sick, you immediately noticed her pale skin and dark under eyes...they captured this beautifully!!  The gtubes, ports, hospital bracelets, and Barb!!!  Barb's love for the kids is so apparent but she is stern for their safety and her heart.  We have met a handful of nurses like Barb...most recently, at Texas Children's one specifically comes to mind.  She has lost many CFer's that she loved so dearly, even her own family member...she loves these kiddos with everything in her, but she also is on them to make sure they do what they should and pushes them to be the best they can!!  So in our world, our Barb, is Cami!  Aaron is another current nurse we love... in the past it's been Canole (aka Nicole), Bri, Amy, Richard and James. 

Emma pointed out that she appreciated that the staff dressed in gowns when they came in the room.  She also loved Stella's decorations, since decorating her room is the first thing we do when she is admitted.  Some of the room decorations, Emma actually has!!  Emma also loved that it showed Stella Facetiming friends and the other CFers.  Facetime is Emma's lifeline while in the hospital.  She has talked to many CF friends via this amazing technology and couldn't imagine hospital life without it!  Emma also loved that they were always wearing face masks!!  She hates wearing them, but knows it's a requirement! 

I asked Emma what she thought of the movie...so out of the mouth of a 12 year old CF warrior...here you go:

"It was sad but good.  

All the little details 

made it feel real.  

I would recommend it for 

other CFers my age and up."

- Emma

The movie does talk about death a lot...I have made it point to be very honest with Emma.  However, I have also made sure to be careful and age appropriate when it comes to this topic.  Unfortunately, Cystic Fibrosis, doesn't care how old or young you are.  We had had to say goodbye to so many young friends.  My hardest conversations as a mom, has been looking my sweet girl, in her big hazel eyes, and telling her we lost another friend.  Emma does have a wonderful outlook on this and said:

"The talk about death didn't bother me.  

It was things I already knew 

so it didn't really phase me."

- Emma

Bottom line the movie was done very well... it does have some scenes that are very "Hollywood"...like the dinner and the pool...but overall it was great.  One thing about the pool scene...this was a very intimate scene...strange to say that, even though they never touched... but the thing that stood out what that they finally felt comfortable with showing their scars to one another.  Emma is very uncomfortable with anyone seeing her port, gtube, or any scars... this showed her that her scars are beautiful... and that made me smile and cry at the same time. 

I do wish we would have seen a little more of Poe's story, because it is a powerful story.  I also wish they showed more parental involvement.  I know theses are teens, but I would still be in Emma's room every day...nothing would keep me away from being extremely involved in her care.  Oh man, I dread cystic fibrosis teen years hahahaha

This movie also made me realize how special the people are who makes a decision to love someone with a chronic, terminal illness.  See, we were chosen to be her parents, we are blessed and beyond lucky to have her in our lives.  But to the man who makes a choice to love and cherish her in spite of her illness.  The man who steps up and says, "I will love you regardless."  The man that says "we are in this together"..That man, I have been praying for since before she was born...and that man, will he a very special individual who will make all the difference in her life. 

The CF fight is hard...it's exhausting and heart wrenching.  But life is hard y'all... and we are not promised tomorrow.  So let's live each day as if it may be our last...love one another, hug your friends and loved ones.  Tell people you love them and for the love of all that is holy...LIVE!!!  Stop making excuses...time is our worst enemy...Do more than just exist!!  If a 12 year old Cystic Fibrosis Warrior can grasp that...so can you...

"Everyone dies.  

There's nothing 

we can do about it.

You're gonna die, 

you can die tomorrow or in awhile.

Anything can happen.

So live your life like you're dying.

Just go out an do stuff,

don't just lay in your 

bed watching sad videos.

DO SOMETHING!" 

Emma, age 12

Wishes Do Come True

For five years Emma has dreamt of surfing with the incredibly talented and inspirational Bethany Hamilton.  She has watched the movie Soul Surfer countless times and has even used Bethany's motto from the movie "I don't need easy, I just need possible" to encourage her in her own journey.  In February her dream became a reality.  Before I tell you about her once in a lifetime adventure, I want to explain how she became a wish child.

On January 2, 2008, at 18 months old, Emma was diagnosed with Cystic Fibrosis, a genetic, life threatening, chronic illness.  People with CF over-produce salt, which causes a thick, sticky mucus to cover their lungs and other organs.  This incurable disease causes persistent lung infections, pancreatic insufficiency, trouble breathing, excessive mucus, along with many other challenges.  In 2016, the University of North Carolina-Chapel Hill discovered that Emma was suffering from a very concerning, and life threatening bacteria called Mycobacterium Abscessus (MABSC).  The treatment for this bacteria is extremely extensive and has required years of oral antibiotics and countless months on IV antibiotics.  The first round of treatments lasted a total of seven months of IV meds and nearly three years of oral meds.  Texas Children's Hospital gave Emma a five month break from the oral meds, only to discover the therapy was unsuccessful and needed to start again, but this time the treatment would be even more aggressive due to her becoming resistant to one of the medications.  

Towards the end of 2016, Emma was on a steady decline.  After a very emotional conversation with Emma's social worker in California, it was determined that Matthew and I should consider applying for Emma to have a wish granted through the Make-A-Wish Foundation.  I'll be honest y'all, this mentally broke me down...Emma was only ten years old at the time. I expected to have this conversation when she was a teen, but this was too soon in my mind.  I will forever remember her social worker looking me straight in the eyes and saying, "Lisa, I know this is hard, but we feel this is the best time for Emma to have a wish granted.  With her current health conditions, we believe she will benefit from the opportunity to fully enjoy her wish before she declines further."  

My heart was conflicted, Matthew and I have a long history with the Make-A-Wish Foundation, as we were blessed to help fund raise for this amazing organization over 15 years ago, while working with my Mom at Kern Security, in Bakersfield, California.  I spent countless hours, with my Mom, in meetings with the Bakersfield chapter and heard amazing stories of wishes they had granted.  I remember fighting tears as they shared heartfelt wishes waiting to be granted.  At an event that we were hosting, Matthew dressed as the dashing Prince Charming, while I floated around with my bright red lips, pale skin, and hair as black as night, working hard to embrace my inner Snow White, so that I could love on every child I would encounter.  Together the employees that participated raised thousands of dollars to make dreams come true.  I have always been thankful for the opportunity to be a tiny part of helping make dreams come true, yet little did I know 15 year ago, that God was actually preparing our hearts for our future.  

In early 2017, I contacted our local MAW office to begin the process of having Emma's wish granted.  After completing the application, we waited to hear from them.  Matthew and I sat Emma down to hear her heart.  We wanted to know what her ultimate wish was, it was critical to us that every step of this process was about her and only her.  Our only request was that she picked something other than Disneyland, since we had Disneyland passes and she had been there numerous times.  We explained that this was her one chance to ask for ANYTHING.  It took her all of about three seconds to say, "I want to surf with Bethany Hamilton!!!"  Emma had been surfing several times with the Mauli Ola Foundation and loved everything about riding waves.  She had also watched the movie Soul Surfer and was enthralled by Bethany's story of overcoming a horrific shark attack.  The biggest bonus was the salt water being extremely therapeutic for her, so we embraced her new love of the ocean.

Months passed and I actually forgot we were waiting to hear from them, until one afternoon, while pumping gas into my little white Nissan Sentra,  my cell phone rang, the unfamiliar number caused a moment of hesitation, but I decided to answer the call.  On the other end was a sweet yet calm voice.  She introduced herself and explained that Emma was approved to have a wish granted and needed to schedule an interview with us.  This was the first step in granting her wish.  I stood at the Fastrip on the corner of Rosedale Hwy and Allen Road, in Bakersfield, and fought back tears.  The mix of emotions were so overwhelming.  I remember thinking "Is this really happening"!!

As the year drew to a close, our family relocated to Lago Vista, Texas and we had to put a hold on Emma's wish.  Her paperwork was transferred to the MAW office in Austin.  In February 2018, we sat down with Bri, Emma's wish granter.  Bri was as sweet as could be and spent time getting to know Emma and hearing her desire to meet Bethany.  She explained that Emma's wish would be transferred to the Hawaii Chapter and all the planning of her trip would be done by them.  She also explained that a celebrity wish was a little more challenging because the timing will be on Bethany's schedule.

Nearly one year later, on Sunday, February 10, 2019 the five us dressed in royal blue shirts donning the Make-A-Wish logo, boarded United Airlines flight 1829 headed to our first layover in Denver, Colorado.  Before departure, United Airlines allowed us to board first and took Emma and Ayva to meet the pilots.  Emma even sat in the pilot's seat and was able to put her hands on the yoke!!!  She was thrilled by this experience.  As the plane began to fill, our airline hostess brought snack boxes to the girls, along with extra treats for Matt and I.  Soon we were in the air, the short flight lasted two and half hours and then we were onto an eight hour flight to Lihue, Hawaii.  The flight was long, but time passed quickly as we watched movies and some even took a short nap.  Finally, Kaua'i was in sight.  With a slight turn of the plane a gorgeous rainbow appeared, my heart leaped in my seat.  As we were landing a double rainbow spralled out across the sky, I felt the tears wailing up in me.  All the challenges we have faced with Cystic Fibrosis seemed like a distant memory at that moment.  I felt like God was reminding me that He is present, and has full control over everything.  The feeling of peace that came over me was incredible.  

We were greeted with gorgeous flower leis by three of the Make-A-Wish Hawaii team, Abe, Angel and Janelle.  They were incredibly kind and filled with joy and I had no clue how they were about to change our lives.  

Abe, is an extremely talented photographer/videographer, social media buff, drone pilot, and all around kindhearted guy. He not only filled this experience with love, but he encapsulated the smiles, laughs, tears, and joys and put them together in a way that we will forever cherish.  He worked so hard to give us the gift of a lifetime of beautiful reflection.

Angel, oh Angel...her hugs were the amazing.  She made us feel loved, safe and special.  She was overseeing details upon details, but never showed an ounce of stress.  She's a Texas girl herself, born here but raised in Oklahoma.  She's a mama, a military wife, and a hero inside of a hero!  

James, our surfing guru came in with confidence and passion to make the wish girls surf experience flawless.  His compassion and apparent love for these girls was remarkable.  He was patient, kind, focused and charismatic.  He not only taught them how to surf, but how to realize they can accomplish greatness.

Finally there was Janelle, a native Hawaiian, who brought the aloha spirit to everything she did.  Her smile lit up any room she was in.  Her big embraces were filled with love, compassion and kindness.  She immediately became "Auntie" to the wish girls and loved them with all she had in her.  She not only shared her love with us, but also shared her lei making talents and Hawaiian Disney playlist!!  haha 

Once we arrived at the absolutely amazing hotel, we met James, the fourth MAW staff member and the three other wish families.  Alex, from Washington, Brinkley from Missouri, and Laken from Minnesota.  Each of these families were just incredible, I couldn't have asked for more amazing men and women to be part of this wish experience with us.  After a meeting, gifts to Emma, dinner, and a little sightseeing, we were all exhausted.  

Monday definitely started early. I opened the sliding glass door to our room and could hear the ocean roaring.  I walked to the edge of the grass to see a stunning sunrise and stood there speechless. Was I actually standing in Hawaii, preparing to see my CF Warriors wish come true??  This all felt like a dream!  We made our way to the meeting room for breakfast and Emma was greeted with a bag full of aloha from several incredible Hawaiian companies.  Janelle also taught the girls how to make lei po'o (flower crown).  We had some free time on Monday, so the girls were quick to run back to the room, put their bathing suits on, and test out the five spectacular pools including water slides at the hotel.  We then met up with Shari, an amazing local that blessed us beyond measure.  Shari is the niece of a member of my dad's church!!  Small world huh!!  She invited us to lunch, where we talked nonstop about life on the island, ministry, Make-A-Wish, and so much more.  Emma expressed wishing she had her Ukulele and we joked about needing an extra suitcase for all the amazing gifts Emma was receiving.  When we returned to our room, Shari had delivered both to our room.  That evening we met up with the rest of the wish families and the MAW staff for an unforgettable evening at the Sheraton Kaua'i Resort for the breathtaking Auli'i Luau!!!  The host of the luau was a former wish father and was not only entertaining but had a huge heart for our group.  Matt and the girls loved meeting him after the show.  

Tuesday was another early morning with an action packed day awaiting us.  Once again, I started my morning with opening the sliding glass doors so I could hear the soothing sounds of the ocean.  We were greeted with smiles and hugs from Abe, Angel, Janelle and James.  Emma was showered with more gifts and love from the generous hearts of the Hawaiian community.  After breakfast, we walked over to Shipwreck Beach, the private beach owned by the hotel.  We met Rochelle Ballard, a professional, World Champion surfer who is also considered the best female barrel rider in the world!  Over the past two decades, Rochelle has been a pioneer for the advancement of women surfers.  She is ranked among surfing history's most elite.  She also owns Surf Into Yoga.  Rochelle spent her morning with us teaching us the importance of yoga (for the record, she also made "whales breach in the distance" and rainbows appear. It may have just been a coincidence, but I'm pretty sure, all of us agree Rochelle has magical powers!!!).  After yoga, the surfing guru, James, taught the wish girls and families the basics of surfing.  Since Emma had prior surfing experience, James used her to help show everyone what to do.  Then it was off to the hotel's salt water lagoon for some "wave-less" practice runs.  During the fun, Emma was challenged to do a headstand on the surfboard while it was moving and she accomplished it!!  After the surf lesson it was time to load up and head to Backcountry Adventure Tubing!!  Y'all... holy cow were we in for a treat!!!  Once we arrived, signed all the release papers, and were fitted with helmets, gloves, and the essential crocs (don't even get me started on how silly I felt rocking these ugly, plastic, yet oddly comfortable shoes), we loaded up in vans and took off for an adventure in a two-plus mile, retired irrigation ditch on a sugar plantation near Mount Waialeale.  As we emerged ourselves into the "refreshing" waters, and plopped onto our large tubes, we had a few last minute instructions and off we went down the ditch.  Now I will back up to mention I said "refreshing" because they told us to never tell anyone how cold the water was...but bless the Lord, that water was icy, frigged, cold, downright freezing y'all!  My body still shivers at the thought of that "refreshing" water.  Our guide was quite an eclectic dude, that played a water proof ukulele nonstop during the next few hours.  I will admit, it was his talents that gave me a new love of the charming sounds of the Ukulele.  His rendition of Willy Wonka's Tunnel of Terror song as we plummeted into one of the five tunnels, was amazing.  As our experience came to an end, we longed for the warmth of our car, but were so incredibly grateful for this amazing opportunity.  Upon returning, we took quick showers, and rushed to dinner with the rest of the crew and had a scrumptious dinner with Bethany Hamilton's parents, brother, and sister-in-law.  After dinner, we returned to the hotel and had a private viewing of Bethany's new movie "Unstoppable"!  As we collapsed into our luxurious beds that evening, Matthew and I recalled our amazing day with amazement, joy and gratitude.

Wednesday would be the day dreams are made of.  On this day, I would witness joy I had never experienced.  On this day, Abe, Angel, James and Janelle went from Make-A-Wish Staff, to friends, miracle workers, and life changers.  These four amazing souls planned the most incredible day.  Their efforts, along with the incredible KORE Kaua'i Team led our wish kids and families in a magical Hanalei Bay experience that will forever be ingrained on my heart, mind, and soul.  Every detail was perfect, from the pop-up tents, to the food, to the music, to the gifts, everything was done with love, grace, and true aloha.  As we stood in the parking lot preparing for a day of surfing with the one and only Bethany, a black pick up truck pulled into the parking lot.  Out hopped the 5 foot 11 inch, blonde hair, blue eyed inspiration.  Sporting a plaid shirt, comfy black printed joggers, and a turquoise baseball cap.  Emma was standing nearby and walked over to the truck.  She greeted Bethany along with Angel and Alex, another wish gal.  She was able to give Bethany a hug and chat a tiny bit.  I stood back snapping some pictures and trying to keep myself from going into full ugly cry mode.  This was really happening!  My daughter, my hero, was standing in front of me hugging one of her heroes!!  I mean come on!!!  After a quick greeting and yoga session, the wish girls were taken to have some time with Bethany.  After the group time they each received some one-on-one time with her and Emma was able to ask her anything she wanted.  Emma wanted to know her favorite scripture and worship song, and how she moved past blaming God for her accident and was able to fully trust Him.  I was particularly impressed with her thought provoking question.  I wondered how my sweet warrior has had to push through this very question herself.  She has had to move past asking God why me, and has realized that she has value in this world.  That she may have Cystic Fibrosis but it definitely doesn't have her.  Emma's question to Bethany was giving more strength and power to Emma to keep walking in God's grace.  Bethany's answer was sweet and seasoned with God's love and biblical promises. After they talked we made our way to the ocean, about 100 feet away.  Emma was reunited with Kiana Fores, an incredible female surfer who lives on the island.  Kiana was the first person Emma ever surfed with!!  They were matched up in Santa Monica, California with the Mauli Ola Foundation five years earlier.  Here stood this gorgeous, kind-hearted young lady, ready and waiting to conquer the waves with Emma.  As they carried their board out into the salty waters, Bethany ran up to meet them...together the three of them paddled out in to the water.  I was positioned on the pier, while Matthew was in the water with our Go Pro.  Bethany, Kiana, and Emma were in place and when the first wave came their way, they paddled and began a ride that brought tears to my eyes.  Emma was surfing...surfing in HAWAII!!!  Not only was she surfing with the incredible, loving Kiana, but with Bethany right beside her.  I could hear the cheers of many in and out of the water.  I saw Matt jumping and cheering her on. It was such a beautiful moment!  I remember standing there in amazement of all Make-A-Wish Hawaii had done to make that day a possibility. As I was watching the day unfold a beautiful, sweet lady began talking to me about all that was going on. We just chatted away for awhile. Then she said “Oh by the way, I’m Sarah... The real Sarah. Carrie Underwood played me in the movie!” I stood there stunned for a second and told her how we had just been talking about her a few hours prior. I told her she had to meet the girls. We kept sharing our hearts, talking about life, youth ministry and the island. Once the girls came out of the water, they were able to meet Sarah. It was absolutely magical.  A few days later I read a post from Sarah Rachel Hill that said: “Sometimes we have to stop praying for healing and start praying for purpose. Submitting our wants and desires to God can be difficult, but aligning ourselves with His purpose...life changing. When the storms rage, God is in the midst of it.”  For years I have prayed to have God’s perspective in the midst of our trials, but I’ve never considered stopping to pray for His purpose instead of healing!!! What an amazing thought!!! 

Thursday: We met Abe, Angel and Janelle for our morning meeting, gift giving, and breakfast and reminisced about the day before.  Honestly, even now as I sit and write this blog I am still in awe of the MAW staff, Bethany Hamilton and her family, Kiana, the KORE team, and the generous people of Hawaii, who came together to make Emma's wish greater than we could have ever asked.  After some chatting, we received word that the surf was good and we headed back to Hanalei Bay for another day of surfing.  This was a more relaxed day and Abby and Emma loved every moment they could get in the water.  After some surfing, it was time to say goodbye to the people that gave us so much.  I won't try to act tough, I cried like a baby!!!  Saying Mahalo to this team that became friends and then family was not only impossible but it actually felt like a piece of my heart was being ripped out.  These four friends gave our family something we could never provide.  Not just a wish experience but a dream come true...a true, real once-in-a-lifetime experience.  They gave us fantasy, a fairytale, and a daydream that was real, tangible, and life changing.  After the tearful goodbyes we ventured to the businesses that were waiting to meet Emma and bless her with tons of free goodies.  We found a fish market near our hotel and enjoyed a great dinner and made our way back to our beds.  Our stomachs were full, our hearts were overflowing, and our emotions were all over the place.  

Friday, with sad hearts we packed up all our stuff and said goodbye to the beautiful hotel.  We headed to Lihue for our final adventure before flying back to Texas.  This one would take us through the clouds to see the island from an extra special view.  As we arrived at Sunshine Helicopters, we were all excited and nervous.  Ayva would fall asleep for part of the flight and Abby, well, she turned green!!  The motion of the helicopter caused her to struggle with motion-sickness.   Our pilot, Steve, was a decorated military veteran, who served our country as a pilot for many years.  To our surprise, he was also a pastor!!  I can't make this stuff up y'all!!  God is just that amazing.  As we took off he shared the island's history, but knowing our faith, he also shared the religious background also.  It was Steve, who explained that the island of Kaua'i is known as the island perpetuated in Christ's righteousness.  He also shared that Aloha isn't just saying hello/goodbye.  Aloha means "the breath of Christ within you"!  Let that sink in for a minute...how beautiful!!  As we flew over the Napali Coast, which is one of the most stunning things I've ever seen, I realized that this week wasn't just about granting Emma's wish.  This week was about God putting people in our path to breathe the breath of Christ into us.  We were there to receive the Aloha spirit from Make-A-Wish Hawaii, our new family members Abe, Angel, James and Janelle, the other wish families, Bethany Hamilton and family, the KORE Kaua'i team, Shari, Sarah, the numerous amazing photographers on the beach and in the water on surf day with Bethany, the hotel staff, and the generosity of the Hawaiian People.  Heck, even the dude that made us the most amazing cheese filled burgers out of a food truck in Kappa!!  

This trip was something we will cherish forever. The memories will get us through our hard days of fighting Cystic Fibrosis and the friendships will be our strength in weakness.  We truly received the gift greatest gift of... Aloha my friends and Mahalo!!

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