a different kind of perfect

i'm a mom...on a mission...to enjoy life everyday...appreciate the little moments...try not to get so easily annoyed...raise my kids with a faith legacy that leads them to continue to be amazing people...and to make my husband feel as special as he makes me feel.

What is Cystic Fibrosis?

CF is an inherited chronic disease that affects the lungs and digestive system of about 30k children and adults in the US (70k worldwide). A defective gene and its protein product cause the body to produce unusually thick, sticky mucus that both clogs the lungs and obstructs the pancreas and stops natural enzymes from helping the body break down and absorb food. [www.cff.org]

Monday, September 9, 2013

For where your treasure is, there your heart will be also. ~Luke 12:34

When I look back to the last post date, I realize I'm not a successful blogger! By definition a blog "is a frequently updated personal journal..." but as you can guess, the title of this post clues you in to why I haven't had a second to share, however not lacking people to be thankful for so here's a recap of the past 3 months...

After the amazingly successful Chillin' & Grillin' for a Cure and Aunt Karen's Eat. Pray. Dean Great Strides walk in Reno, we set off on a mission to thoroughly enjoy our family time this summer!

Jim successfully completed his fourth Ironman, we introduced Cali and Owen to the wonderful world of rollercoasters at King's Island, Cali chose to celebrate the big 10 doing a mud race with her closest friends (where does she get that from?), we enjoyed watching fearless Evie learn more gymnastics (I spend my time holding my breath when I watch her), took a quick trip to the Dells for an end of the summer weekend with Tom Tom, Karen, Aidan and Megan - exactly what we needed to end the summer before back to school!  Owen acheived a rank of red belt in Tae Kwon Do over the summer and started his first flag football season as a Steeler (he looks so tiny in his big jersey)!  Cali keeps us on our toes too, with a two week late start to her waterpolo season because she had to get her appendix out (she's now a vegetarian - crazy story) but is thoroughly looking forward to having her siblings on the swim team with her this year!

On the CF front, Dean had an awesome quarterly check-up at the CF Clinic (one day I'll describe those long appointments) with a clear culture and a promise to recheck his lungs in October which I have to say allowed me to breathe a HUGE sigh of relief. Since we found additional buildup in April, Dean's morning treatments have increased and we weren't supposed to get another xray until April 2014 (a year is such a long time to know if what you're doing is working). Fortunately we're able to recheck his lungs at the next visit and we'll have a better idea if this set of treatments is working.


August brought just a non-stop flurry of activity and fun. Each year our town has a softball challenge and our subdivision won the tournament last year and was responsible to host and organize this years tournament. We were honored to find out the CFF, in honor of Dean, was the beneficiary chosen for the challenge. August 4th was an absolutely gorgeous day, filled with sunshine, families and 11 teams from Frankfort, all dedicated to giving their best, their all, their time, energy and money to help us raise the $ we need for a cure. In preparation for the day, so very many people (many who had already helped us for the Chillin' & Grillin' and the Great Strides Walk) spent an enormous amount of time making sure the day was awesome. Food, drinks, sno cones, raffle prizes and face painting were gathered, donated, served and precious little faces, arms and hands were decorated. A generous man from Frankfort rolled out the Weiner Wagon and donated hot dogs and his time and then his enormous tip jar to make our day even more successful. Countless businesses and individuals helped make this an event we'll never forget. A precious little girl rocked out the National Anthem without hesitation and Dean got to throw out the first pitch. The fire department made Dean's day by showing up with the truck and ambulance, parking right next to a Natural Gas cement mixer. Fun times. A great big thank you to Amy, Greg, Paula, Jeff, Judy, Kari and every other person that helped set up, play, take down and make such a successful donation to the CFF. We're so amazingly grateful and good luck next year Misty Falls....



 
 
 
A few days later, Oberweis held a day long event to give back a portion of the proceeds from those that visited the store because of our event. We haven't found out the amount from that day but graciously thank all those that stopped by and ate some ice cream (surprisingly, we didn't have to beg at all to get a good showing here)!









We were fortunate enough to meet the wonderful Kane family, whose goal each year is to host a charity luau and raise funds for those in need. Amongst stories of those they knew, they invited us to join their event as they were raising money for the CFF. We had a blast, reconnected with an old friend, met some great people, saw a Nature's Creature's show and again were blessed to be at an event, so meticulously planned, that helped us realize again, that each day is a gift and what you do with it can truly change the world.






Last weekend, Jim & I set out to do our first CF Cycle for Life. 7 amazing friends joined us, collectively raising $4,500 since January for an event that I don't think any of us will soon forget. The ride, 65 miles for Tommy & Jim and 30 for Karen, Tom, Becky, Scott, Kathy, Pam and I was set in the gorgeous (mini) hills of Geneva. A little rain, thunder, lightening, some pickle juice, gatorade, snacks and some generous, generous donors continues to bring us one step closer to our cure. We're abundantly blessed for the time, energy, humor and love that this team put into riding and raising this year and we're excited to already have 7 people signed up for next year!

Tom, Karen, Scott, Becky, Pam, Kathy, Erin, Tommy & Jim
 
You can join us next year too or consider one of two remaining events this year, a CF Climb for Life on November 10, led by another great friend, Candy or a Palm Springs Great Strides walk on Oct. 26 led by Aunt Dor.

So, looking back, our treasure is our kids. Our heart beats to them now, making sure they learn how to make best use of their talents so they can be a blessing to others. We truly loved being able to accept almost any invitation extended this summer, swimming, biking, play dates, visiting with friends and family (especially one that is now 1800 miles closer than last year), dinners, lunches, hanging out on the driveway, pretending we're just as good at the ripstick as the kids...we'll skip those pictures...

It's not always smiles and giggles here but we tend to be half full with our glasses so the good far outweighs the down times.

Blessings,
J&E
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