Spring 2002 ~ Newsletter

Hope: While Having Cystic Fibrosis

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Patient and Parent Perspectives

A Testimony of Hope Walking

by Tony Siciliano

So, you’ve recently learned that your child has CF… What was your reaction?  Did you freak out?  Do you still have lingering fears that your child’s future will consist of nasty coughs, IV poles, and hospital food?  Have you fretted that your son or daughter will miss out on the life that you’ve dreamed of for them because he or she will be too sick to enjoy it?  If that’s your situation, chill out!

Sure, learning that your child has CF is something akin to a bonk on the head, but don’t lose hope.  Even if your child does have to spend time in his life in the hospital, chances are that same little tot will grow up to spend summers goofing off with other kids, and spend the other three seasons standing in the lunch line at school.  You’ll take Junior on family trips, fix young Sara’s hair for her first homecoming dance, and, with tears in your eyes, watch your budding adult go off to college.  I’m serious!  CF doesn’t have to rob you of being a kid.  And, more and more, CF doesn’t rob you of being an adult, either.

I’m 29 years old, have CF, and despite my parents being told that I would only live to be about 18, I’ve had as “normal” a childhood as a young lad could have had.  And guess what, I’m not alone.

And, there are a lot of us walking around as adults and we’re still going strong.  Of course, now some of us have kids of our own that we’re worked up about for one reason or another.

There’s other good news.  There are medicines for CF that has improved greatly in the last decade, and they’re just getting better.  With all that we’re learning about genetic engineering, you never know what’s around.  Today, there’s also the option of lung transplantation.  Okay, you don’t even want to think about that yet.  But, transplantation is a good thing!  It’s also an option that wasn’t around when I was a tyke.  My old CF lungs didn’t go sour until I was in my mid-20’s, but when they did I received a new pair.  Now, two years out, I breathe better than ever and the new lungs will never get CF.

If you still have some worry, channel those fears into action by giving your child good chest therapy and encouraging him or her to be active.  Keep a positive attitude and share it with your child.  You never know what good things the future has in store.

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From Despair To Hope

by Brett Vebber

What exactly is hope?  Before you read any further I want to define what I believe hope is and explain my title to help you with the rest of my article.  Hope is defined as an expectation or desire for certain events to happen.  I used to confuse this definition and believe that hope was faith – the evidence of things wanted in the midst of evidence not seen.  I have learned over the years that these two are strikingly different.  The reason I titled my article, From Despair to Hope, is because it seems my life has been patterned after this thought.

Growing up with Cystic Fibrosis is not an easy life to live.  I want to take you for a roller coaster ride with my life story and hope when you get off that your situation may be seen with the same perspective of hope.  The reason I use the roller coaster as an example is because of the range of the emotions spent from one moment to the next.

Let’s begin our ride with my life just before my teens.  I lived as normal a life as anyone doing well in school and not really having to go in the hospital as some of the children that I see and know today.  I was at a camp for Cystic Fibrosis at the age of thirteen and getting filmed on the news.  In the evening, we watched ourselves on the news only to hear the broadcasters telling us the terminal disease kills people as an average during the teenage years.  Anyone could have heard a pin drop. As I started to get sick and rebel, my father kept instilling in me to never give up on hope.  The roller coaster seemed to be going up a hill.  I continued to fight for life even though I was going in the hospital about four times a year, on average.  As a result of working hard to have hope and not swimming in sympathy, I graduated from college.  I began to think my life could finally be normal.  I started thinking of getting a job, eventually wanting to get married and have a family.  What little did I know…my parents had different plans for me – here comes another turn on my ride of life.

My parents said my medicines alone were about $2,000 a month and I needed to stay on Medicare and Medicaid because of my hospital bills and medicines.  My high turned into lower than low.  What was I to do with my life now?  I knew that I did not want to sit around and sulk so I decided to think about my purpose in life and what goals I wanted to accomplish in the midst of not having a job.  I have volunteered for five years now, and in this time received a Masters in Counseling and getting my Masters in Divinity.  I know a parent would hate to see there child have to volunteer and not work, but I have been very independent and believed I could live life not having to be from others all the time.  Where am I now?  I am currently dating a great friend and looking to getting married in the near future.  I am also trying to decide from the different types of employment, and which insurance will give me the greatest coverage.  This roller coaster ride is not easy – just like life is not easy, but hope abounds!

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A Trip To Holland

Author Unknown

I am often asked to describe the experience of raising a child with a disability – to try and help people who have not shared that unique experience to understand it, to imagine how it would feel.  It’s like this…

When you’re going to have a baby, it’s like planning a fabulous vacation trip – to Italy.  You buy a bunch of guidebooks and make your wonderful plans.  The Coliseum…David, by Michelangelo…  and the gondolas in Venice.  You may learn some handy phrases in Italian.  It’s all very exciting.

After months of eager anticipation, the day finally arrives.  You pack your bags and off you go.  Several hours later, the plane lands.  The stewardess comes in and says, “Welcome to Holland.”

“HOLLAND!” you say.  “What do you mean, Holland?  I signed up for Italy!  I’m supposed to be in Italy.  All my life I’ve dreamed of going to Italy.”  But there’s been a change in the flight plan, and there you must stay.

They’ve landed in Holland.

The important this is that they haven’t taken you to a horrible, disgusting, filthy place, full of pestilence, famine, and disease.  It’s just a different place.

So you must go out and buy new guidebooks.  And you must learn a whole new language.  And you will bee a whole new group of people you would never have met.

It’s just a different place.  It’s slower-paced than Italy, less flashy than Italy.  But after you’ve been there for a while and you catch your breath, you look around and you begin to notice that Holland has windmills.  Holland has tulips.  Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy, and they’re all bragging about what a wonderful time that had there.  And for the rest of your life, you will say, “Yes, that’s where I was supposed to go.  That’s what I had planned.”

And the pain of that will never, ever, ever go away, because the loss of that dream is a very significant loss.

“But if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things about Holland.”

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I Choose Joy

by Vicki Walker

When my son was diagnosed with Cystic Fibrosis at ten weeks old I was devastated.  However, through the last nine years, I have learned to try and find joy in every situation.  There is a verse in the Bible that says, “You have made known to me the path of life; you will fill me with joy in your presence,” (Psalms 16:1).  This verse is a source of hope and inspiration as to how I should live my life.

I have made many close, wonderful friends during Charlie’s hospitalizations, other families and hospital staff.  These people have brought must joy into my life.

The company that I work for has been so understanding and supportive.  They allow me to do my work at the hospital.  This keeps me from having to worry about my job while Charlie is hospitalized.  This is truly a source of joy in my life.

The school that my children attend has been a special blessing.  The employees of the school, the students and the families of the students have shown their love in so many ways.  From making sure my children get their work made up when Charlie is hospitalized, to fundraisers in our times of need.  True love and joy all over the place.

My family has always and will always been a big support factor in my life.  Their love, support, and care are always strong and never ending.  Joy, joy, joy!

And now my church family – How can I ever describe how much joy they bring to my life?  I know they are always praying for us.  Each hug, each word of encouragement and each prayer remain in my heart always.  Their support in our times of need is phenomenal.  My church family truly loves the Lord and truly loves us.  Great love and joy always!

I know the Lord has a reason for everything.  Even though having a child with CF is difficult; he has sent many people into my life to bring me joy.  I thank Him for that.  I hope you all will remember that He will fill you with joy in His presence.  CHOOSE TO FIND THAT JOY.

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