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]

Wednesday, May 22, 2013

Happy 5th Birthday Evie Dorothy!

A little break from the CF updates to share that Evie Dorothy Burns turned 5 yesterday!  Time flies...she is an awesome little girl.   Jim took the day off of work to take her to breakfast but she said, I don't want to go!  He said ok.  After a great day helping in her classroom at school and a short playdate, Jim asked her to go to lunch, she said, I don't want to go!  He said, well what do you want to do?  This was her answer:

Evie doing pull ups
Our little overachiever watches and mimics dad in all his athletic endeavors.  Love it!

We cooked her favorite dinner (Auntie Mayra's marinated Flank Steak and corn on the cob) which doesn't jive with the plant-based nutrition but we obliged for our little Sweet Cheese.  When asked earlier, Evie said she didn't want cake, cupcakes or a cookie, just ice cream from the creamery but we had to take our bikes there to get it.  She wouldn't accept riding in the car.  We had a great ride, the storms held off and the kids got a treat we don't usually indulge in:

Evie - 5

Cali - 9

Owen - 7

Dean - 3
 Evie, we pray you all treasure your free spirit and forever keep your sense of independence and adventure.  We love you with all our hearts!

Monday, May 20, 2013

2013 Great Strides - another AMAZING day!

Last Saturday was an awesome day!  We gathered early in the morning with the sun shining, the fear of rain erased by the beautiful blue sky and an abundance of amazing family and friends for our third Orland Park Great Strides Walk.  After setting up the tents, tables, chairs,  t-shirts, and hanging the banner, we were blessed with an abundance of food from dear friends to satisfy every craving all of our 150 team members had.  We were able to chat, walk and share while Dean (and Evie, Owen and Cali) ran around playing, smiling and turning his head at the camera.  Associates from both the Frankfort and Tinley Park Kohl's participated and shared their morning volunteering with us, only one having a connection to Dean.  I want to list out every name of all the people that helped us last Saturday but I'd be listing everyone. We wanted to talk to everyone on Saturday but there were those that we only got to hug and say hi and goodbye too.  We appreciate the time and energy it took to join us.  We are so blessed and amazed by the support we receive, both financially and spiritually and absolutely know we could not do this without any of you.  The majority of the $23k so far has come from your generous donations and the people that have signed up to help us raise money by sending our story to their family and friends.  We are excited to have another two (maybe three) more walks this year:  Aunt Karen will be walking in Reno in a few weeks and Aunt Dor in October in Palm Springs.  We are forever grateful for their time and excitement for our cause.  Here is a team picture from last Saturday and a wonderful picture of just how tired Dean was by the time the walk was ending.

Eat. Pray. Dean Orland Park Great Strides 2013

Sleepy Dean on dad's head

Besides the two walks, we are doing everything possible to generate money to ensure that by the time Dean is eligible, he'll be able to have medicine to treat the underlying cause of his Cystic Fibrosis.  If we didn't already mention, nearly 90 cents of every dollar goes directly to fund vital research and development.  Money is what pushes the needle to get us closer to the cure.  Prayers are what help keep us faithful that our cure is within reach.  Yesterday evening, Cali asked me how long a person with CF lives. I almost cried at that question, hoping that I would never have to verbalize to one of the kids.  Armed with the knowledge that the truth can never fail, I told her. 37 is the median life expectancy. I will turn 37 this year and as Kimmy said, I couldn't imagine my life being near the end.  I explained to Cali that that is exactly why we fight so hard to raise money, why we get up and do all 3 meds and a vest treatment first thing before breakfast EVERY SINGLE MORNING and a vest again before bed, EVERY NIGHT.  That is why we take him to clinic appointments every 3 months, why we make sure he gets a ton of exercise, why we keep up with his vitamins and enzymes, why we changed our diets so that they ALL understand how important nutrition is to their well-being. That is why we walk in Great Strides, why we spend a crazy amount of time ensuring that the Chillin' & Grillin' event is fun so people want to support us and keep coming back.  That is why we run, bike, climb, swim - to not only raise money with Team CF but to teach all the kids that besides nutrition, exercise is vital to keeping your body healthy. Finally, that is why we pray and have faith that we can accept and know that God put us here for a purpose and we're all in this together.  This family works with all of us in it and that's exactly how we intend to keep it.  I hope that calmed her fears a bit, but I know it made her realize how important of a role she plays in helping raise awareness and in loving and fighting for her brother.

We are preparing for the Saturday June 8th Chillin' & Grillin' for a Cure on Yellow Finch Lane in Frankfort, Il. from 3-9pm. Check out the schedule of events and purchase tickets at www.eatpraydean.com.  We welcome you to join us and support this very worthy cause for either the satisfaction of knowing you're helping Dean, the 30,000 others in the U.S. or just to have a FUN family day. 

Connect with us on Facebook at www.facebook.com/eatpraydean where we'll soon post the raffle items that we have and on Twitter @EatPrayDean and Instagram CURE_CF_EATPRAYDEAN

Thank you for all that you do to help us add tomorrows.

Sunday, May 5, 2013

Info on Dean's Great Strides Walk and Chillin' & Grillin' for a Cure

Our Great Strides walk is on Saturday May 18th at Centennial Park in Orland Park, Il.  Centennial Park is large and the best place to park is in the Metra station (10401 153rd Street) and walk across to the fields.  Registration and light snacks at 9:30 with a kick-off speech at 11, followed by the 2.5mile stroll around the park and a boxed lunch around noon.  Bring your bag chairs, strollers, wagons, scooters, camera and an umbrella or sun screen.  Thank you to the amazing group of people that have already registered and helped us fundraise by reaching their family and friends - we're at 50% of our 2013 goal of $30k!  Pre-register/donate for the walk here: 
We're bringing back the Chillin' & Grillin' for a Cure this year on Saturday June 8th from 3-9pm on Yellow Finch Lane in Frankfort, Illinois.  You can see the lineup of events and prepurchase tickets at http://www.cff.org/great_strides/CandG.  Tickets are discounted through May 31 and include your food, drinks, music by Poochamungas and Cannonball, bounce house (supplied by Hawkinson Kia, Hawkinson Nissan), adult bag tournament and kids crafts, games and activities (Art4Clowns will be here again with the Caricatures, face painting and balloon artist and Frankfort Black Belt Academy will host mini Tae Kwon Do sessions).  We will have a separate rib competition and a ton of raffles (including 4 one-day park hopper passes to Disney, a basket by Beam, Inc., 31, movie passes, Museum of Science & Industry, Shedd Aquarium tickets, rounds of golf, minor league hockey and baseball tickets, housewares, kids summer fun basket, wine and so much more).  Like us on Facebook to get more frequent updates:  www.facebook.com/eatpraydean.
Our little man turned 3 on March 30th and is full of excitement and "gweat" ideas. Healthwise, he's doing well digestively but recently had to increase his daily respiratory therapy routine after his annual X-ray showed additional inflammation and mucus build-up in the lungs. In true Dean form, he's taking the extra daily meds like a trooper. 3 inhaled and nebulized meds and a vest session in the morning before his day starts and a vest session in the evening before we wrap up our day is his norm. Phase 3 Clinical trials start in a few weeks for the combo of drugs that we pray will be his cure. It's so close, it's hard to contain the excitement and feeling of hope. Thank you for being a part of this, for your support and your prayers for his health and his cure. 
With love and thanks,
Jim & Erin