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]

Telling Dean's Story

Every good and perfect gift is from above - James 1:17
We have been together for almost 19 years and have experienced so many wonderful things in life together.   We always thought we were lucky…totally right place at the right moment, carrying around some kind of horseshoe, must have been given a lucky shamrock?  Never thinking life could get any better than as we were going through it. Blessed by not 1, 2, 3 but 4 gifts:  Cali, Owen, Evie & Dean.   As our family grew, we soon learned that our “luck” wasn’t luck at all but pure Blessings.  Our spiritual relationship grew over the years and we realized that God had always been looking out for us, His hand was always on us, never giving us more than we can endure…
Stepping back to late March of 2010 , we were anxiously waiting for the arrival of our 4th child.  Being a (Hicks)Burns, we have have been very fortunate to welcome in some very large babies-- 9lb 10oz, 9lb 9oz, 10lb 0 oz.  So when number 4 was approaching our due date,  we were a little worried that he/she was truly going to tip the scales at Palos Hospital.  On March 30, 2010 Dean Patrick came out 7lbs 13 oz--our prayers once again answered, not too big, not too small, just perfect. 
Shortly after his birth, Dean lost a little weight when we took him home from the hospital.  A week later, after a lot of feeding and pooping we noticed Dean was having difficulty getting back to his birth weight--weird.  Then came the phone call any new parent worries about-- “You need to bring your son to the hospital so we can confirm the results of your newborn screening.  Your son has tested positive for Cystic Fibrosis.” 
What is Cystic Fibrosis?  Cystic Fibrosis is an inherited disease that affects the lungs and digestive system of about 30,000 children and adults in the United States (70,000 worldwide). A defective gene and its protein product cause the body to produce unusually thick, sticky mucus that:
·         clogs the lungs and leads to life-threatening lung infections; and
·         obstructs the pancreas and stops natural enzymes from helping the body break down and absorb food.
It felt like getting hit in the face by a ton of bricks.  The first thought that came to mind was a movie one of us had seen years ago about Cystic Fibrosis, Alex: the life of a child; the images that came to mind from that movie were unsettling.  Obviously we were in a state of panic.  Doing research online can be pretty scary.  You read all of these blogs, and medical sites that have facts about the disease.  We were shocked, didn’t even know we were carriers, had no idea that we could pass on such an ugly disease.  We didn’t even know what it meant?  Would our son survive, would we?  There were so many times over the course of the last year that we felt defeated, that we felt helpless, that we felt hopeless.  We were in autopilot for a while and sometimes still feel we are.   We struggled with how to tell people at first and opted for sharing with only a few.  We didn’t want pity, didn’t want to have a story, we didn’t want Dean to be viewed as a sick kid, didn’t want this disease to define him.  How could this happen?  What did we do?  Why? Why? Why us?  Why him?  Why our little boy?  Answers we will never find out in this lifetime so we have to deal, deal with what we were given.  
We were given a beautiful baby boy; one that now has soft curls and 9 teeth, one that says mamamamama, dada, ca (for Cali) and Evie is convinced can say thank you.  A 22 pound little boy who rolls around like a tornado with his big brother,  Owen.  A little hamsum that is “shooting baskets” with his fisher price hoop, who is pushing around a toy shopping cart, who is doing the frankenstein walk.  A little deano sheano cappucino whose little pancreas doesn’t work and needs to take:
·         2-3 enzyme capsules per feeding/snack (approximately 17-21 capsules daily),
·         Zantac 2x a day (to increase absorption of food),
·         Extra vitamins A, D, E & K,
·         ¼ tsp salt supplements,
A little boy that daily endures countless minutes of "thumpers" (manual percussion on his lungs) to clear the mucus and who needs a diet high in protein, fat and calories which makes us very attentive to his food intake.  We were given a little man who will always make us smile, one we’ll fight every day for, one we will not let see when we break down and can’t control the tears, one that needs your help too.
Because we want to be part of the solution and raise awareness, because we don’t want to keep it hidden or be ashamed of this, because we want to make it easier for him to breathe, because we want to do what we can to save our son and the other children who fight this crazy illness daily, we are forming a team in the annual CF Fundraiser, Great Strides 2011.  On May 14, 2011 at Centennial Park in Orland Park, as Team Eat. Pray. Dean we will gather together to celebrate Dean’s first year.  We will participate in a 3 mile walk and celebrate as a team.  Team Eat. Pray. Dean has a goal of raising $3000 and we need you.  Please
·         join our team as a walker, create your own webpage and help us raise $ to get to our goal:  Great Strides 2011
·         look up a local walk in your area and start a Great Strides team to benefit Dean
·         donate money for the cure if you’re unable to join us
·         share our Great Strides 2011 homepage with your family and friends
·         pray for a cure.
We know that God has a plan and although we can’t quite grasp the details, the why? the will it be ok? we have to keep the Faith and realize we’re not in control, that it all fits into the greater scheme of things.   So we will do what is in our control, we will believe that a cure can be found in his lifetime and we need to do our part to help fund the research to find that cure.  We can’t do it alone.  On our Great Strides homepage, you can see a video of Dean’s first step.  As he is taking his first great strides, we hope you can join us for ours!
Jim & Erin Burns
Great Strides 2011 homepage 

sent out March 15, 2011