Steps of determination and love...

Wow...I was just looking at my sons feet in his hospital bed this morning and marveling at just how big they have gotten lately. How quickly life is flying by...how fast he is growing up. Then I started looking at my feet.

The feet of a mother.

So completely different. My feet walk with a much different purpose then my sons. They walk to my children when they call my name. They walk around the grocery store picking out food to nourish my family. They walk to stay in shape. So different then why his feet walk. His feet walk for joy. For fun. They walk to collect candy on a Halloween evening. They walk to hug and kiss their families. They walk solely to live. To be present where there hearts are drawn to at that exact moment in time.

As a mom my feet walk with a very determined purpose. To heal. To love. To cherish. They walk to give hope for a future without cystic fibrosis. They live to carry me from each space where I can share my sons struggle and bring awareness to the most common genetic disease in the us. They walk with a purpose. They don't take much time off. They don't get put up to rest as much as they should. But they are what keeps me going. They carry me to my purpose. and tomorrow they will carry me thru 3 miles in hopes that others won't have to take those same steps with their loved ones. They walk for a cure. Tomorrow they walk for cystic fibrosis. The most powerful 15,000 steps they take each year.

The steps that mean more than anything in my life.

They walk for my son.

For your son. Your daughter. You.

They walk for 29,999 others...most of which are strangers my feet will never step close to.

But still so important to them. To me.

So tomorrow at 10am these feet will resume their purpose. Their determination . Their mission. Their dream. Their greatest hope. Their greatest fear.

Join us.

To everyone they're just feet....something to be covered with socks and given the occasional coat of nail polish. but to me...they're my greatest asset and my greatest treasure. because they carry me to just where I want to be. 3 miles of pure adreneline and pure bliss. And then they will carry me to my bed tomorrow night to rest my head, relaxing and knowing that with each step I took one of your kiddos, or you yourself were in my thoughts. Pictures of them floating in my head. Praying that maybe this is the last year I'll have to take those steps, but fully prepared to do it again next year and the next year if need be. They walk for your pain. They walk for my pain.

They walk for you...

Chefs Dinner for CF a HUGE success! $120,000 raised in 3 hours!

A truly amazing night...we raised over $120,000 for vital CF research for our miracle CURE! It was amazing. Former Portland Trailblazer Jerome Kersey and Stephanie Stricklen from Portlands KGW news Emcee'd the event and it was spectacular. The food was extroidinary, the wine pairings were so good (Brad told me as I'm not a whinno!) and the people we met had amazing stories of hope and despair because of what cystic fibrosis has done in their own lives. I was so honored to be there. As promised...I will post my speech, which was amazing because I never did get nervous, and when i was done there was not a dry eye in the room, even Jerome Kersey was crying and HE shook MY hand to say thank you...WOW...a night I will never forget! So here goes...

I stand before you tonight so very humbled to have been asked to be here and I feel to do our sons fight the justice it deserves that I need to be as honest as I can be. Ours is a CF story I wish you never had to hear. I wish it were simply a horrible lie, but it is our reality and sadly, the reality of so many others fighting this monster we call Cystic Fibrosis.

My husband Brad and I have a beautiful 6 year old son named Conner. He is our first born son, our miracle, the one who changed our priorities, made us less selfish and the one who showed us what unconditional love was. Our reason for living. Every tiny milestone he met, we celebrated as first time parents do. We didn’t know he had CF, to us, Conner was the easiest, most loving, perfect child we could have ever dreamt of having. Until that horrific day when CF showed up and made its presence and mission very clear by taking my son’s breath away. At 11 months old Conner stopped breathing and my husband had to do CPR to save his life. We realized in that instant that CF was not a disease to take lightly, and it’s been a part of every second of every one of our days since then, a very unwelcome addition to our family.

Fast forward a few years; he’s in the first grade now and is such a boy! He loves to be outside playing, being with his friends, he adores his weekly campout every Friday night with his dad and brothers, he loves transformers and star wars, football Sunday’s, snuggle time with mommy, riding bikes, camping, school, video games all things most 6 year old boys enjoy. His smile is simply magical. He’s at that awkward stage where about every other tooth is missing and some are big and some are small, yet it’s still the most adorable smile I’ve ever seen. It suits his personality perfectly.

He is a very determined kid. He is the bravest boy I’ve ever met. His entire life has been one hospital stay to the next. By his 3rd bday we realized we needed to move from the LB peninsula to be closer to Doernbecher, because of his frequent hospitalizations. Conner is considered a frequent flier at the hospital because in his 6 short years he’s been admitted 21 times because of CF. His life is filled with PICC lines, IV’s, EKG’s, medications, Lung function tests, x-rays, blood draws, blood sugar checks, sputum cultures, breathing treatments, tube feedings, chest physiotherapy, ultrasounds, bronchoscopies, swallow studies, 2 different ports for IV’s, g-tubes, scoliosis tests, Doernbecher Children’s Hospital and Shriner's as well…

His list of daily medication is like picking up prescriptions for your grandparents. Over 15 different medications he takes every single day costing over $8000 a month and taking over 3 hours a day to administer. Reflux meds, oral and inhaled antibiotics, enzymes to help him digest food, vitamins his body is deficient in, mucus thinners, bronchodilators and probiotics. By days end he has done 24 doses of medicine. Those are simply the preventative medicines, when he has an active lung infection add to that list a few powerful oral antibiotics or even a hospital admit for IV antibiotics and the cost and time spent on treatments goes up significantly.

In addition to the 3 hours he spends doing meds and breathing treatments, Conner must also do chest physiotherapy to loosen the mucus from his lungs each day. He alternates between doing his VEST machine and a PEP device for airway clearance. PEP takes about 15 minutes to do each time which is 4 times a day and VEST therapy takes 30 minutes twice a day. Both therapies help him to clear the thick mucus from building up in his lungs causing infection and inflammation.

CF also makes digestion and weight gain nearly impossible for Conner. He fights for every single ounce he gains. You can count his ribs, and fit his thighs in the center of your encircled hand. He has almost completely stopped eating now, because it is too hard for him to breathe and eat simultaneously. So he has a G-tube, where he receives a very high calorie, broken down easy to absorb formula and also straight fat in it 3 times a day, directly into his stomach. And he receives even more formula overnight as he dreams. Even in his sleep Conner can’t escape the realities of this disease.

He requires oxygen quite frequently each day so we have an oxygen concentrator as well as portable tanks thru out our home. Every single breath he takes is a struggle. He can no longer say full sentences without stopping to gasp for air. He has a bi-pap machine that we’re working with him on, that will help his lungs rest at night while he sleeps. Because the simple job of breathing that you and I take for granted has taken its toll on his tired, overworked lungs. They need a break or they’re going to give up.

All of this, you can imagine makes it very difficult for Conner to just be 6. CF surrounds his days and has made our family change the way we live our lives. Its affected us greatly. We had to move. We can’t plan vacations because his health is so unreliable. Our home has become the battlefield against the war we wage against CF with medical equipment scattered all over our house. We had to get him a handicapped parking tag because he can’t walk far distances any longer. He no longer goes to school with his friends because the risk of catching a virus has become too great, so he gets home tutoring by a teacher. I have to screen every single person that comes to our home for illness because if Conner gets even a cold, he’ll wind up back in the hospital.

This past year has been Conner’s worst year yet. We’ve seen first-hand how quickly CF can cause a person’s health to deteriorate when it attacks full force. Conner was admitted to the hospital 9 times last year alone, and between those admits, he also did home antibiotics a number of times as well. He spent most of last year fighting for his life. Or more accurately, we’ve spent the past year not trying to save his life, but to postpone his death.CF has taken residence in his life in a very detrimental way, shaking our family to its core, desperate for a miracle. We’ve been told that “there’s nothing more they can do for our son”. So we know where we’re heading, but we have no idea when and how, or if he will suffer. This pain that I feel fuels me even more to continue our fight, not only for our son, but for every other parent of a CF child, that they may never know this horrendous and indescribable pain that we are feeling every second of everyday now. Because this disease doesn’t just affect the 30,000 people who test positive for it, it affects their families, their friends, their loved ones…this disease effects hundreds of thousands of people.

I have complete faith that a cure will be found. I realize the chances of it happening in time for our son are slim, but I am so encouraged for the youngest of souls battling this disease. I am so hopeful that many of the CF families here tonight will see their children grow old and see their dreams of a cure happen in time for their loved ones. We must find that cure. There is simply no alternative.

You and I are in this fight together, yet our battles are not the same. I’m a mother, fighting desperately to keep my son alive. And you are a group of amazing people, financially trying to SAVE lives. One battle simply cannot be won w/o the other. We as CF parents have no chance to save our children’s lives w/o researchers dedicated to finding a cure. And researchers can’t search for that miracle cure without financial support. We need you more than you will ever fully realize.

After all, doesn’t my family deserve to be able to see Conner’s gap toothed smile fill in with teeth? Shouldn’t he be able to breathe in deep breaths of air effortlessly like you and I? Isn’t it cruel that so many lives have already been lost? It is just not acceptable to see our son cry in pain because his lungs hurt when he breathes…and it’s not normal for parents to be thinking about having to bury their young child. Parents aren’t supposed to outlive their children. It’s not ok that those in their 20’s with CF are considered the “old timers” of this disease. It shouldn’t be acceptable that instead of enjoying life fresh out of college that many of these young adults are going thru the emotional and physical struggles of being put on the transplant list for new lungs. They are still babies. This disease is lethal. It does not overlook even the people with “mild” cf. it finds ways to make their lives more difficult to live as well. It takes no prisoners, only lives. And that simply can’t be tolerated.

Thank you so much for partnering with us to stand up to this disease and stop it dead in its tracks. You are our hero’s. Your donations show those with CF that their lives are so much more than a clinical statistic, but that their lives are worth just as much as yours and mine. Your money funds clinical trials, creates new therapies, extends people’s lives, and gives our families more precious time to simply live, to love and to breathe. Thank you for giving us more time to fight for our sweet Conner, because we’re not ready to give up and we’re certainly not done loving him yet.

Another admit BITES THE DUST!

"You're going home tomorrow!"

Those are words that I never tire from hearing.

Finally..............

This is Conner's 9th or 10th admit this year ALONE. The MRSA that has taken residence in his lungs have led to this horrific year...that thankfully...is ALMOST OVER! You know I have never really cared what year we're in, or about New years...never made a difference to me one ioda! but this year...THANK GOD IT'S ALMOST OVER!!! I've gone back thru Conner's mychart account here at the hospital and he has spent OVER 200 days of his life here in the childrens hospital. he has in turn spent another exactly 202 days at home doing home iv's...and has spent another 159 days doing home oral antibiotics all to fight this horrible disease! For those who are math savvy that is almost 2 years of his life....and he is only 6!!!!

But let me put it into perspective.

HE FIGHTS EVERYDAY OF HIS LIFE!

To do the things we take for granted... he fights to breathe, he fights to have enough oxygen to breathe AND eat at the same time, he fights to have the energy and strength to walk thru a grocery store w/o getting winded, he fights to keep his supplemental oxygen needs to only night time and not daytime as well, he fights to digest his food, he fights to gain even half a pound, he fights with the constant desire to be "normal" with his friends and not be tied down to his over 15 daily therapies, he fights he fights he FIGHTS...

And as a mom, i watch him fight.

i ache.

i suffer.

i feel soo overwhelmingly helpless.

It is by the grace of God that I can put a brave smile on my face each day.

That when people ask me how Conner or I are doing, that I can somehow say "ok." Because we are FAR from ok...

It kills me to see him out of breath, gasping...I've seen the inside of his lungs, he is fighting for each breath he gulps in. I bravely hold his hand when they put that push pin sized needle in to access his port for Iv's as they have since he was only 3. 3 people! Most people with CF dont need ports until their teen years or beyond...he is 6 and is on his 2nd port because his veins are SHOT from all the PICC's and Iv's they've had in them from birth. Hell he was stuck with needles when he was in my belly. You wanna talk about perspective...my son truly believes he is LUCKY to have a port. That kid is amazing beyond his years. AMAZING.

So we are getting discharged tomorrow probably early afternoon after his 2 iv's at noon. He will be on iv's until next monday or so. Christmas week. already. The week where we were planning on doing preventative iv's for his upcoming make a wish in early january. heartbreaking that these iv's in fact are not preventative in any extent of the word. they are to help fight the mrsa that is taking over his lungs. So he will be done with his almost 2 months of iv's on monday. he will get exactly 7 days off from iv's, then will restart them the monday after Christmas for Hawaii. We are looking at possibly doing oral antibiotics while he's in hawaii to make sure that he stays well so far from home.

Each night I pray for a cure, i spend hours of my day praying for a cure, or crying on the inside, putting my brave mommy face on for my son...he is much stronger than I am, there is no doubt about that. He is a CF Warrior...he takes this battle head on with a strength I will never know or fully understand. I cry when I have to get blood drawn...BOO FREAKING HOO...seriously! He inspires me to be stronger, to be better, to live in each moment, to be more patient and more understanding, to fight alongside him for a CURE. He so deserves it. All those with CF and their families deserve it. In the grand scheme of things in my life...truly...nothing else matters, not what year it is, not one little thing.

only a cure...