The MONTELONE 5: A FAMILY UNITED

By: Stefany J.

FORGET EVERYTHING YOU THINK YOU KNOW ABOUT CYSTIC FIBROSIS (CF)

It’s amazing how sometimes things don’t become real until they happen to you. I knew nothing about Cystic Fibrosis (CF) prior to being sent the media content about this family. Sure I had kind of heard of the disease but I had no idea what it was about or any of the particulars. Imagine my surprise when as a severe asthmatic, I learned that it is a lung disease that starts and is completely centered around lung function. From that point on it became near to my heart and a new cause for me to add to my long list. I know what it feels like to not be able to breathe. I know what it feels like to have your life impaired by an illness that handicaps you from simple things. I know what it feels like to have tubes down your throat and machines breathing for you, and now that I learned about CF and what so many live with, I couldn’t turn back or turn MY back: nor will you!

YOU CAN MAKE A BIG DIFFERENCE! | IN THE BEGINNING …

The Movement

You can help make a direct impact and difference in the lives of these 3 children, their treatment, and their quality of life with a simple gift of $3.

Cystic Fibrosis is considered an Orphan’s Disease because there are less than 200,000 with the diagnosis. The government does NOT fund research.

Meeting this family helped me remember…

LIFE…

These parents have made sure to be completely honest and transparent with their children about the life expectancy of their disease. When their mom told them that the average years was 37, their frame of reference led them to believe that meant they would grow to be old. It won’t be until they get older that they realize that a life expectancy of 37 years old is actually very young by traditional standards. Once I started doing my own research I learned that there is a lot for us to take for granted when it comes to the expectation of quality and quantity of life and especially for those with an illness. The Montelones came home from the hospital with two sets of healthy twin children and another child. They had no idea until the diagnosis of the first, that their lives would never be the same, and nor would the lives of these beautiful children.

IS MORE ABOUT WHAT YOU’VE MANAGED TO FIND WITHIN YOURSELF TO GIVE, RATHER THAN WHAT YOU MAKE ROOM ENOUGH TO RECEIVE.

THE JOURNEY OF THE MONTELONE FAMILY IN THEIR OWN WORDS: BY PAULETTE AND ROB

HOME FROM THE HOSPITAL & THE DIAGNOSIS

EVERYTHING SEEMED TO BE GOING WELL…

In our world every day is precious. It was a real wake-up call when we were diagnosed with cystic fibrosis and told that this is a fatal disease. You never want to hear that word. That just is really difficult as a parent.

LIVING EACH AND EVERY DAY WITH HOPE & FAITH

GOD HAS A PLAN FOR EACH AND EVERY ONE OF US…

And for whatever reason, part of His plan was for us to have the cystic fibrosis and to come into contact with the people that we’ve come into contact with. Our purpose is to show God’s love through how we raise our children and how we are with our children; and the fact that we can put our faith into God. It may not be the plan that we had in mind for our kids and it may be a difficult plan. God never promised us that life would be easy. He just promised us that He would be there with us through it all, through the ups and through the downs. That’s what we rely on.

We rely on the fact that when we’re having a tough day, when we’re having our kids go into the hospital, that God sends us a friend that cheers us up. He guides the doctors and helps them to give us the right medication. We trust that God has a bigger plan and that our life can be a story about how God has worked through our lives. I think when we were diagnosed, we came away with that “Lord, why?” It’s just a natural reaction. I don’t think we were angry, I think it was more of we don’t understand, humanly, why you walk away, why this is the way it is, why we have three kids who have this. We have friends who unfortunately aren’t able to have children and I think, “God, how blessed am I that you’ve given us five beautiful kids.” It’s a perspective thing. We are just very, very grateful to the Lord.

They were growing well. We had some issues with Michael. As far as we thought he had a lactose intolerance, but our pediatrician kept reassuring us that it might be something he would outgrow. We really didn’t have a diagnosis of the kids until Gavin was nearly three years old. Once that happened, we had the test run on all the other kids as well. Michael was diagnosed with cystic fibrosis and so was Brooke.

It came right before Christmas that year, and we were really just in shock because you go from having perfectly healthy children and expecting so many things out of life and so many things for them and activities that you just take for granted that your kids are going to be involved in, and everything changed. We were just dumbfounded with, “How is this going to affect our lives? How is this going to affect our daily day-to-day activities?”

Right away we had a hospitalization with Gavin. It was like our introduction to cystic fibrosis. That previous November he started with three sinus surgeries back to back; and then another hospitalization in March. One day all this medication arrived at our doorstep, and there were no instructions on how to administer it. We had to call around to friends and finally found someone in our neighborhood who had children with cystic fibrosis. She kindly came over and gave us directions on how to put the equipment together and give the treatments.

It was just completely life-changing, especially having three of them with this. We had to have friends in the church come over in the morning because the kids were so young and needed someone to sit with them. They didn’t want to sit with their face masks on their faces and they didn’t want to shake in the Vest machine, so someone had to sit with them during all of the treatments.

It was really overwhelming at first, the whole adjustment to the future and the things that we don’t do. We don’t go out to places where other kids are in huge groups. We don’t go to the bounce house places and different things like that, because every time they’re around a large group of kids and they’re bouncing and people are coughing, you are more exposed to all those germs. Our kids can breathe those in and then that might cause them a hospitalization or shorten their lives to a certain extent.

It becomes a lot more of awareness of the people around you, what’s going on in the vicinity around you, and trying to just allow them to have a normal life and to do the activities that children do. Also, to be aware of the possibility of harm to the kids or the possibility that this may not be the safest environment for them. Things like that.

It really was a huge change for us. We still do as many activities as we can. We have them playing soccer with their friends and they go to public school, but we also are very cautious… It’s that balance. We have to now have a balance, something that we never would have given a thought to before. There has to be a balance between what’s the healthiest option for them and are we still allowing them to be kids and allowing them to enjoy life and do things that are great experiences in life.

MY QUESTION AND ANSWER INTERVIEW WITH THE PARENTS:

HMM: How is it possible that the surfing is therapeutic and not exhaustive to the point where it’s harmful?

TMF: I don’t know. I think this is kind of a God thing too. In the ‘90s, in Australia, there was a group of cystic fibrosis kids who were healthier than others in a group. In a nutshell, the doctors put together that these kids that were healthier surfed.

The results weren’t just, “Hey, these kids are healthier.” They were remarkably healthier. They had less hospitalizations, their lung functions were higher, … They just were healthier. To make a long story short, they made a link to the ocean, God’s fluid. I say, “God’s magic fluid,” in the film and it’s absolutely true; true hypertonic saline.

I don’t know if you’ve ever been out in the ocean and you’ve been a little clogged up in your sinuses, but after you get out, your nose will drip water out for awhile. Your upper sinuses and everything are clear. I’m not a scientist. I know that the hypertonic saline opens up these clogged airways and helps to dispel some of the mucus. It gets the kids clear.

I also think that from doing this with the Mauli Ola Foundation for the last … I think we’re going on two and a half years, surfing is such a great exercise. I’ve been under those waves. Holding your breath, standing up on the surfboard and cutting waves and then paddling all the way back, is great for getting those lungs working and building lung function, the lungs and muscles. Besides the good smiles it gives us all and the good feeling of enjoying life.

HMM: My last question to you is, we’ve talked about your faith, we’ve talked about how you perceive things as parents and how it was interacting with the children and the siblings. Marriage is a challenge, period, the relationship of marriage. Marriage with children, another challenge. Now, marriage with two sets of twins, another child, because it’s always the twins and then the child, and then three with diagnosed CF and then your faith and everything you go through. Could you please tell our readers how you’ve managed how to stay so tight-knit as a couple in your relationship with all of this?

TMF: I think that sometimes a diagnosis like this can do one of two things. It can divide a family or it can unite a family. I think that part of the reason that we’ve been so united is because of the Mauli Ola Foundation. When they brought surfing into our lives it was like the glue for us. It was like the silver lining in the dark cloud of cystic fibrosis. I said this before, but I can’t express it enough. We were given this diagnosis and it was like this doomsday. Hopelessness. Like you said, you have to understand that we had all five kids in three years. We went from zero kids to five kids in three years. We had four kids in diapers and one that had just been potty-trained. Life was extraordinarily busy in this household. At the, at time, my husband was working in the mortgage industry and he was working crazy hours. It was just very, very difficult. Then we started to come out of that and were hit with the diagnosis, and it was overwhelming. Our relationship was difficult, we were difficult with each other, things like, Did you give him his treatment? Did you do this? Did you do that? Oh, why did you forget that? With five kids there’s always something that you’ve forgotten to do or the kids have done something that they shouldn’t have done. There’s always some little trauma in the house, and yet we had surfing. That was something we all enjoyed.

It was the only time we were united. We went out to the ocean. You could almost put everything else on hold. At least you could for the moment.

The CF stuff was all left at home. Sometimes we had the nebulizers with us and what not, but for the most part you put that aside and you went out with the family.

You enjoyed your day, the kids’ laughter, the kids’ smiles. You were able to build sandcastles and you were able to swim in the ocean with them, and experience that with them, and know that it was good for them. It really united us.

Marriage is a difficult part of life, but it is also a wonderful thing to have somebody to share it with and company to share the ups and the downs.

I know a lot of families that are dealing with cystic fibrosis and their marriage hasn’t been successful and they’re dealing with this alone. The father or the mother is there, but they’re not together anymore. They go home and they have to be alone knowing that their child has to be in the hospital. They don’t have that communication with each other. I can’t imagine that. We share the burdens, the joys, the disappointments.

Even when we were totally overwhelmed we progressed in this. Golly Jeepers! The lists are endless. Just being up at 10:00 at night and running around and racing around, just working as they’re totally tired, we would just laugh like we’re just teenaged kids or something. It sucked, but you were in it together. It was, and it is. We’re happy.

We’re in it together. These are our kids and we work together to make or lives as great as we can. Obviously there are challenges that we face, but we are in this together and I think we appreciate each other’s abilities and commitment. This is our life and we considered it blessed.