What A Day!

I think it will take me awhile to get all this one out.  The day started like most others.  Up around 5am with Cole.  We cuddled on the couch until I had to get up and get ready.  My mom picked me up at 7:30 and we headed to Iowa City.  PJ was staying behind to take care of this kids.  Jenna had to work so she was driving up a little later. 

After Cole was diagnosed and we started going to Iowa City for treatment, the director gave my email address to another cf mom to help welcome me and give me a person to connect with.  She was the head of the parent advisory committee at our clinic.  She emailed me with her story and a photo of her family.  They have twin 5 year old's with cf.  TWINS...can't even imagine that one.  As soon as I saw her today I knew I had seen her and knew her name but it took me a minute to figure out how.  It was nice to finally meet her face to face.  She welcomed us all to the conference and then introduced our guest speakers.  Twin sisters Isabel Stenzel Byrnes & Anabel Stenzel!  They wrote a book called "The Power of Two" and have a movie coming out soon.  I had heard of them several times and knew a little of their story.  They talked about 10 ways to find the power to fight CF.  They were amazing.  Entertaining, informative, funny and full of life and hope.   They have both had lung transplants (one has had 2 - she rejected the first one).  It's amazing how meeting people and hearing their story in person can transform your whole feeling of them...so much more powerful than anything I could have read online.  Their book will mean so much more to me now.  We received free copies of their book and also a children's book called "When will I get over my illness?" about a little boy who asks his doctor when he will be well.  They had to be at another clinic in Minneapolis that afternoon so they were hurried to get on the road after their presentation.

Then we had a "Making the Most of Chest Therapy" session.  It was wonderful.  Clinic is always packed full of things that need to get done and information that needs to be exchanged and it's hard to get it all in.  It was so great to get another "CPT (Chest Physical Therapy) 101" class.  Cole has grown so much since the first time we were taught about this so we were reminded that we need to change and add to what we are doing as he gets older.  One of the PT's went over everything and showed us all the different ways mucus can be loosened and expelled.  We still do manual CPT regularly as well as using the vest.  We definitely have not been doing it hard enough.  I am grateful to have learned that today and not 5 years from now or never.  My favorite Dr. also went over the new lung inflammation treatment guidelines they are using.  There is so much to learn and remember with this disease and they are constantly learning more and more so it is pivotal that we are always learning and relearning all of this.  It was so fun to have Jenna there.  This is exactly what she's studying and being tested on right now so it was crazy that it all fell into place like it did. 

Breakfast and lunch were catered in and everything was free ~even parking :)  During lunch they had a smaller room opened up for the newly diagnosed parents to be able to gather, meet, and ask questions.  A doctor, the director and a couple family's on the advisory board joined too.  We still have a million questions, so it was awesome to have time in a smaller group to be able to ask some of them.  It seems like when we get the chance we always forget so many of them.   I always write them out before clinic, but I still manage to forget to ask some or am too busy trying to entertain and appease Cole to get them out.  There were 2 families of very recently diagnosed babies.  It's amazing how quickly I've forgotten what that felt like...Only 18 months ago that was us.  It's nice to be out of that phase.

After lunch we heard about all of the amazing things our clinic is doing.  I never realized just how great of a clinic we go to.  I am so blessed to have them so close to us.  Some people have to drive hours to get to any cf clinic.  We drive one and we are at one of the finest in the WORLD!  We are the only clinic to have Cf pigs and ferrets.  We are one of 12 to have the accreditation we do.  They are seriously leading the way in changing the way this disease is treated.  It is very exciting to be involved.

Last was all of the latest news that came out of the CF Foundation National Conference a couple weeks ago.  We got to hear all about the newest drugs and treatments.  I knew of some of them but I was still floored by others.  Nebs that fit in your hand and run on batteries.  An antibiotic to take the place of tobi that takes less than 5 minutes to administer and is only needed once a day!!!  Things that will add hours to our day and reduce hours of fighting our children to take their meds.  There are so many drugs in the pipeline right now and so many are so promising.  I can't even go into the vertex drugs...something that could fix the basic genetic mutation.  The possibility that taking a couple pills everyday could make Cole's lungs normal, healthy.  That he could breathe like us.  That we would never again have to think about transplantation or lung disease.  I have all the hope in the world, but I can't allow myself to go there very often or for very long.  It just hurts too much to come back.

Throughout the day we were able to talk with other families, hear their struggles, their advice and their triumphs.  It is easy to forget that our way of life and dealing with and treating Cole's cf will always be evolving and changing.  It's nice to have people who have been there to talk to and go to for advice.  It is wonderful to hear a mom and dad talk about their 20 year old daughter w/ cf and how she is taking care of her own treatments and meds now.  It is scary to hear about a parent's struggles with letting their adolescent begin taking over the responsibility of their care.  It is heartbreaking to hear a mom ask what to do about her 5 year old's embarrassment when he has to go to the nurse for CPT and the kids walk by and stare.  But mostly, it is wonderful to know there are people out there who can help guide us through all these things.

There were 2 families there from our area that we had met at the last Great Strides walk.  It was nice to see familiar faces and get to reconnect with them.  It makes it more exciting to go back next year - we will have met so many more people and feel that much more comfortable.

The day ended with a stop into a friend of the family's room in the hospital.  She was re-admitted last night for chemo, then radiation, then a bone marrow transplant.  I just thought since we were there I wanted to bring something for her to do during her stay - but it was hard to figure out what would be good.  I came up with Itunes gift card.  When we went to the desk to drop it off the nurse said "I'll just walk you back" so we stopped in to see her and and her mom.  I can't even begin to talk about this one.  It's not my story to tell anyway.  I will say that on the way in to the inpatient pediatric oncology floor we walked by a common area, living room type room where a child around 5 was having her birthday party.  There were decorations, and presents and even other children.  No child should ever have to have their birthday party in the hospital.  I bet her parents were just elated to be celebrating another birthday.  Another room had huge paper-cut our snow flakes hanging all over the room.  We think it was a girl from California who has never seen snow so they decorated her room in celebration of her first snow experience soon to be on it's way. 

I think everyone should have to walk through these halls at least once a year.  A rude awakening of what is truly important in life and how lucky we are just to be here at all.

I saw a quote somewhere recently..."remember that you are not guaranteed tomorrow and that today is as good as it gets."  I stopped and thought, "no, it will be better when...." and that's when I really got it.  NO- TODAY IS AS GOOD AS IT GETS.  Try to enjoy every damn second of it.

A little bit nervous...

So, tomorrow I will be attending my first "Family Education Day" at University of Iowa Hospitials (where Cole goes for CF).  Last year we signed up but by this time we were on lock down and I wasn't stepping a foot in a hospital.  I even cancelled his clinic visit that month afraid we would come in contact with H1N1.  Anyway, this is my first time attending something like this and meeting all the other parents and caregivers of cf'ers at our clinic.  I'm nervous.  Nervous that I will hear something I don't want to hear, that all those people knowing what I fear and do on a daily basis will be enough to break me down, nervous I will realize I am not doing enough.  Just nervous.  It's stupid, but when something is so important to you, I think every detail and interaction makes you crazy.  At least it does me.  I'm very excited too!  For all the same reasons.  I can't wait to hear what all was said at the conference this year.  I can't wait to listen to the sisters from "The Power of Two" talk about their lives and finding the power to fight this disease.  I can't wait to hear more about chest therapy and lung inflammation treatments.  Mostly, I can't wait to be surrounded by people who get it....people who I don't have to explain a second of my thoughts and fears to.  People who can teach me and tell me what they have found useful in their lives.  People who maybe some how I can help or make feel stronger, better.  Lastly, I am sad.  Sad that there are that many people who know what this disease does.  Sad that there currently is no cure and that so many people's lives have been cut short because of it.  Sad because we will all leave there tomorrow and go home to our sick children, give them their breathing treatments, chest percussions and medications and still not have the ability to allow them to breathe like the rest of the world. 

Mostly, I am excited and hopeful.  Excited to make new friendships and connections...to find more souls who's paths are like mine.  To meet more people that one day I will stand with and celebrate the fact that our loved one's no longer have a death sentence from this horrid monster called cf.

Thank you!!!

It's still a couple weeks until our 2nd Annual "Crawling For a Cure" Bar crawl to raise money for the Cystic Fibrosis Foundation and I am already amazed at all the support we're getting.  Last year I think we ordered 100 shirts.  I put in the order today for this year and .....it was 255 shirts!!  That in itself is amazing.  Then out of the blue, a college friend of mine emailed me and asked if he could donate a vacation voucher for our raffle!!!  A VACATION!  So sweet and generous of him.  That raffle alone is going to bring in so much money!  Thank you Matt(ie) (Spanky as I often called you).  You have always been such a sweetheart! 

Then I get a check in the mail from another friend for WAY more money than ever expected and she didn't even ask for a shirt!  She's getting one, but her and her family's kindness and caring words are so amazing and humbling.

Cassie's cousin JR designed our shirts this year and his company is giving us a great deal on the shirts so that even more money can go to the foundation.  We will be getting our pictures taken tomorrow to put it in the local newspaper and he will bring a poster he designed for Danny.  A wonderful tribute for a life cut too short because of this disease.

Here are what the shirts will look like (except we added another logo for Euclid Beverage who is sponsoring our crawl)

I have to say that my wonderful sister Jenna makes all this possible.  In the short 19 months that we've lived with this disease in our lives she's raised THOUSANDS of dollars for the foundation (around 10,000 now I believe).  She is the reason that the crawl happens and will continue to get bigger and better.  She did such a great job raising money for Great Strides our first year, she was asked to Chair the event last year!  Did I mention she is now in school to be a respiratory therapist???  Yes, Cole will have his own (full time) RT for the rest of his life...and his mommy will have the assurance that we know what we're doing and doing it right.

So, THANK YOU TO ALL OF YOU!!!  Words can never say how much I appreciate it and how much it warms my soul!

I'm still here!

So, I feel pressure to write now.  When it's been awhile I wonder what's going on with me!  Am I dodging the thoughts floating around in this head???  Yes and no I guess.  The thing about me is I write as conduit..getting it out here helps me somehow.  So, it's good when I'm not fueled to send my crazy ramblings out into cyberspace.  But, it doesn't mean that they aren't there.  I don't like the fact that most of the time I seem so down or anxious on here but usually when things are good I don't need to spit them out into the universe by typing.  I get to be in the moment and live.  Or is it just that the craziness is being dealt with in another way??? 

I'd like to think I'm growing as a soul.  That I am really using what I deal with as learning materials.  We'll see :)

Tonight I was thinking about regret.  You want to know the truth?  I don't regret any of it!!!  I wouldn't want to change the past because I don't know if I would end up here and there is nothing that is so bad that I can't live with it so THERE!  I have been blessed enough that my mistakes haven't ruined what I hold dear today.  That in itself is amazing.  Makes having kids that much harder though I might add. 

In the words of a wise soul who's looking down on us today - "LOVE LOVE LOVE"  If I just live up to that I will be okay.