Thursday, March 3, 2011

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!

1 comment:

  1. I hope you see this!
    Found you via "Felix and Victor" blog. Two of our seven are DD508 CFers and we are Catholic converts. Your family is beautiful and I'm looking forward to some quiet (ha) to read more and get to know you guys!
    Warmly,
    Allison

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