Open House=HUGE SUCCESS!

Our first open house/kick off went so well.

-30 people were served!
-2 new walkers registered
-4 bookings were set up for tastings
-$1,149 in products were purchased
I was impressed with the turn out. The good food. The money we made for CF while enjoying all the above (note to self: ~$200!!!!) A huge success!!!!!

Check out the picks from Wild for a Cure HERE.

We also shared with our supporters this year's t-shirt design made by one of our parish's very own alum, Jade Ashburn.

Jade is incredibly talented and created a design that captures it all!

We decided the shirt color should be Irish Green in the theme of the clover image and donning a Topel Family pic on the back.

Cost is $10 for adults, $7 for youth sizes ($1 from each shirt will go towards our fundraiser:))!
You can order one even if you can't walk.
I will be putting in our first order this week Wednesday.

Something Beautiful

The theme of our Confirmation retreat this year was "Something Beautiful" based on the song by Need to Breathe.



We got home on Saturday night. My sister had lent me some of her large glass cylinder vases for a retreat a few months back and I had finally gotten around to parting with them. But while I was packing them up, I heard glass shatter. No! I thought. How could I be so careless. I felt terrible knowing I had broken something someone had given me to borrow. But I've also learned to not sweat the small stuff especially when it comes to having 4 small children and a dog in the house. The crazy thing is that I decided not to take it out until that specific moment. Why? I was unsure until I saw that God had desired for me to see it at the certain moment in all eternity.

I picked up the broken glass to toss it out. When I turned it around I saw this...

A complete and beautiful heart. I'm not sure why God chose to make Himself known in such a way. But I do know that only God is capable of such perfection. Such intricate detail. And only God could do that. Something beautiful for sure.

Oli and Nush

Cute kid CF video. And I love the British accents.

April PowerHouse

I must say, I'm really excited for this coming month's youth group line-up. The Holy Spirit did a really nice job!

This Is What We’ll Do in April.

Eye of the Needle. I have no idea why it’s called this. There isn’t even a needle involved. Oh, wait. Yes I do. This team building activity involves a hula-hoop balloons and people passing through the “Eye of the Needle”. All in relation to the rich young man.

Improv Skits. We’ll give you the theme of Lent. We’ll also give you 3 random lines you must use at some point in your skit. You’ll give us the laughs!

Coke Relays. What does a Coke can, a group of middle-schoolers, and a parking lot all have in common? Come to Coke Relay night to find out!

Dinner & a Movie Night: “Henry Poole Is Here”

Scheduling, Schmeduling

Today I scheduled the kiddos follow-up appointments. Cooper needs to be seen in 2 weeks.

"When does he need to be seen?" I tell the receptionist "6 weeks from his last appointment on Feb. 18th." She responds with my least fav. answer-the next available time to see Dr. Green is...

Wait for it....
Wait for it...

"May." I stop listening. I have no idea what she said after the month. It really was not the answer I hoped for. So I ask to be put on the "call list" referring to our Dr.'s nursing staff to give me a call and to squeeze in an extra clinic day so that we can be seen in 6 weeks. And yes, I know it's my fault. I should have made the appointment the last time before we left clinic. But really after 3 hours of seeing the same paint color and playing referee to 4 kiddos 5 and under who just can not understand why blue medical clothes are on the wall for a purpose other than to be played with, I just wanted to get out of dodge! As soon as we leave we start all over again.

When was the last time you visited a doctor or had to be on a waiting list for that long? We've been going to the doctor more than you care to know.

Try scheduling 3 kids for 3 appointments. At the same time. Yep, it's pretty much a nightmare.

550 hours

We plan our day events around CF treatments. They usually take us an hour and a half from start to finish. Add that up, we spend an average of 550 hours/year on therapy alone (and this is just when they are HEALTHY!) Yikes!

I would rather spend my 550 hours...
Drinking lattes
Playing with my kids
Taking long walks
Going on camping trips or vacations
Volunteering for CF
Teach piano lessons
Going on date nights with my hubby
Movie nights
praying :)
Tackling do-to lists
Shopping :)
Learn how to play the guitar
Reading
Exercising
Writing a book
Horseback riding
Learn how to barrel race
Sleeping
Getting all dressed up for no reason in particular
Raising money for CF
Organizing my life! Ha!
Writing a handwritten note to someone I care deeply about
Visiting the sick
Making a meal for those who can not
Spending time with loved ones
Driving my kids to practice, swim lessons, and fun events

I could probably think of a thousand different ways to spend 550 hours a year. But CF has chosen us to spend those hours with. What would you do with an extra 550 hours a year?

“Life is not measured by the number of breaths we take, but by the moments that take our breath away”


“When I hear somebody sigh, "Life is hard," I am always tempted to ask, "Compared to what?" -Sydney J. Harris quotes

A Bucket List

This past Thursday my grandpa died. It was definitely unexpected, but he had been suffering with dementia for the last 8 years. I thought I would share some of my "bucket list" items with you. You know, those things you have to accomplish before this life it over.

-Tour Europe (to include ROME, THE VATICAN, PARIS)
-See CF cured :)
-Ride horses on the beach (I can officially cross this off my list in April!)
-Hot air balloon ride
-Ride a book for new parents of CF kiddos

And until that book comes out, you'll just have to keep reading my blog posts :) They'll have to do for now.


Sleep with the angels-Tiffany

A 4 Year-Olds Prayer Intentions

Last night (as we do most all nights) I asked Colin and Trinity who we should pray for.

These were Colin's prayer intentions/requests (in order...)
+For all the kids in the world who have CF like Cayden, Trinny and Cooper. So they don't have to do all that "stuff."
+For Connor so he doesn't have to get fed by that tube (he meant his feeding tube) and so he will feel better.
+For Catherine Tackman who has the same thing Connor has.
+For Treyton.
+For Grandpa M & M (my grandpa who just passed away Thursday night. They call my grandparents "M & M" because they always bring a package of their favorite candy when they visit).

And I added a prayer intention of my own. For all the kids like you Colin who live with kids that have CF.

What a sweetie!

My Opinion

Do you want to know my opinion on the hardest part of being a CF mama?

It isn't finding out the life span for a person with CF is just 38 years old.
It isn't learning how to give a baby enzymes before each feeding.
It isn't all the stats and emotions you are flooded with.
There were a lot of things going through my head that day Cayden was diagnosed but really and truly the hardest part of learning he had CF was when the doctor said "males are sterile."

What a really crummy side effect from a disease. He is just a BABY! How could he already be sterile. In the week before his sweat test that thought had never even entered my mind. As I scowered the internet to see what ethnicity backgrounds traced their roots to CF, how old patients lived, what it did to there life. I missed it. Completely missed sterilization.

Immediately the questions and thoughts had changed. I won't ever know the joy of being a grandmother. How terribly helpless I felt holding a 3 week old that I would one day have to tell would not be able to naturally produce children of is own.

In my mind's eye I saw his future girlfriends. Would anyone want to marry him? How devastating to fall in love with someone and then have to tell them such a life sentence.

My heart was broken.

It's definitely not the thought that hovers over me from day to day. Sometimes I forget about that. And then someone asks what long-term effects there will be. And I remember again. Like its the first time. CF just isn't fair. I wish it would have asked me my opinion first.

Our Story

We are like any typical American family.

We both work outside of the home. Me as a youth minister for our Catholic Church and my husband as a carpenter. We have a house, a dog named Emma, and oh yeah, some kids.
Only 3 of our 4 kids have a genetic disease-cystic fibrosis (CF). So double all our responsibilities by three. When our oldest son Cayden was diagnosed @ 3 weeks old we knew virtually nothing to very little about CF. We had no idea what an amazing adventure awaited us, but we knew that we couldn't just simply watch from the sidelines while our kids fought the fight of their lives. But with the amazing blessing of good friends and great family we have been able to help our children-Cayden, Trinity and Cooper fight the disease. That's where the CF Foundation comes in.

We don't just raise money in hopes of finding a cure. Don't get me wrong, that's a REALLY big part of it though. We do what we do so other families know what CF is. 10 million Americans are unknowing symptomless carriers of this recessive disease. It can happen to anyone. At anytime. Our motivation for raising money is for future families. To have more hope then we did 5 years ago. To know what CF is and the great potential the future holds. We truly believe a cure is possible.

Some days are great (and they by far outweigh) the bad days. But there are those not-so-great clinic visits when you, at any given second, could hear the "H" word (hospital). Weight gain might be down, or sputum culture results are positive for some unpronounceable bacteria you have never even heard of. There are the nights when the thick mucus has laid dormant for two long and Cayden or Trinity will wake us up in the night coughing. Coughing so hard you pray it stops. It breaks our hearts.

Meal times are mass chaos. Chris and I find ourselves in an assembly line of opening enzymes. Different doses for different kids. Dozens of medications, hours of therapy and nebulizers just to maintain a "healthy" lifestyle.

This is CF.
CF creates digestive problems.
CF creates breathing problems.
CF creates organ problems.
CF creates bodily infections.
CF wreaks havoc on every cell, by INTERFERING with a critical bodily protein from working to properly balance (in the most basic terms) salt and water in the body.

But it is also being called "the medical miracle of the 21st Century." Thank you for being here and being a part of something great. And while I strive to blog weekly it doesn't always happen.

This blog is not a debate or an open forum for criticism or passing judgment. There will be no hatred here. And for that very reason I have changed my comment moderation for approval on each and every posting. Because I do not have the time and energy to blog as it is. But when I do it is to share wisdom, hope and faith that my children share with me every day. To tell friends and family near and far the positive life my children are living because of the CF Foundation's amazing accomplishments over the past 5 decades. At the very least it is a story of perseverance. And when I do have the time and energy I do not need to be beaten with unkind words. Our family survives on support, pray, and our faith in a God who is all-knowing and all powerful. Rich in love and mercy.

So if you are reading for the first time, or the second, or perhaps the 56th time I am not writing this blog as an opening to some great debate or to ask for your approval. I am simply sharing our journey. I am proud of my beautiful family. If you do not agree with how we are living our life, please walk away quietly. And if you wish to build us up with positive comments, you are welcome to do so.

And if you need one more reason as to why I blog. It is for such a comment as these:
I received this post on my blog Saturday.

Christie wrote...
I'm sorry that people are feeling a need to attack you and your beautiful family! I'm currently awaiting results on my youngest son for CF. He had his sweat test on friday and I'm hoping they'll call me monday. I have 4 children and he is the 1st one thats had any health problems of any kid. However, even if he was the 1st, I would probably STILL have had the other 3 because its the choice of me & my husband. It is no one else's business but your own. People with CF are living healthier and healthier lives now. Medications & technologies are getting better and better and I want to hold out hope that there will be a cure by the time my son begins his family. CONGRATULATIONS to you for wanting & having your beautiful family. Your children will learn your love and how beautiful life is and thats an awesome gift! I just found your blog today while I was doing reasearch on CF to pass time while I sit by my phone waiting for results. =) THANK YOU!!!!!

Enjoy this journey as we learn what it means to share LOVE!

The Big 3

Have you gotten over to our Great Strides Site yet? If not, I hope you'll plan to visit very very soon and sign up to walk with the TOPEL TRIO this year or maybe raise some money for the cause, or even make your own donation.

A friend from high school facebook messaged me this past weekend after seeing a Grey's episode with two CF patients in a relationship. She said, "I heard that people who have CF are not supposed to get within 3 feet of each other, is that true? If it is true, how does that affect your kids?"

My response: Yes it is true :( Because of cross-contamination. Obviously in our house it's a rule that kind of goes out the window for practicality sake. We're even not suppose to do treatments in the same room (but again, practically speaking it's not feasible). Every time they go to clinic they have to wear a mask when they are in the elevator or main areas. We meet with kiddos with CF on occasion, but as a good rule of thumb we only do it if they are healthy and not culturing any funky bacterias that could be passed to someone else.

Back in the day (like the 90s when you and I were in grade school) they had camps for CF kids but soon realized that it was not a good idea to breed all the nasty bacteria together. More dangerous strains of bacterias have also resulted from cross contamination. And again it def. depends on the person. Some people are more comfortable than others and I for one truly believe it is beneficial for our kids to meet others with CF so they don't feel so isolated, but it def. has to out weigh the risks. I do know that the internet has been an unbelievable way for adult with CF to connect with one another. This spring we met a pair of twins with CF and one of them had a lung transplant a few years ago but because she needed to be so concerned with germs and sickness she could not shake hands with anyone there. Also when our clinic puts on education days CF patients are not allowed to attend. People with CF can go to the walks but they cannot have a culture of a really long bacteria that I can hardly pronounce (it's basically bad because it is resistant to almost all types of antibiotics).