I didn't let fear win today!

2018 is already proving to be magical!  Things I am seeking are finding their way to me with such ease.  It is amazing to see it happen as fast and easily as it is.

I sent out a call for assistance dealing with judgement a few days ago.  This morning the book “Judgement Detox” was placed right in front of my face in an email.  Even better, I was able to do a free 14 day trial to audible and get this book for FREE AND LISTEN TO IT WHILE I WORK!!!  I honestly have no idea how all this happened, I didn’t go looking for any of it and I am quite sure I have already done the free 14 day trial in the past with Audible and find it hard to believe they would allow me to do it again.  I will gladly take it all with loving gratitude from the bottom of my heart!

The first exercise in the book is to make 4 columns.  Write out 15 things/people you judge or have judged in column 1.  Write how that judgement makes you feel in column 2.  In column 3 write why you feel justified to feel that judgement.  Last, in column 4 try and go back and figure out the moment or events that triggered you to feel justified.  I thought I had only done 10, but I actually ended up with 16.  Then after you are done, you are supposed to look back to see if there are any patterns to what you wrote down.  Any surprises?  And ask yourself how it feels to witness what you wrote.  This is what got me.  I consider myself to be very mindful and aware of my judgements.  I have spent at least the past year practicing just this – watching my thoughts and thought patterns – so this is right up my alley but I really didn’t think I would get any new insights from it.  But, I did!  The pattern in all of them ---àFEAR!!!  Fear that I would do/be/say the things I was judging.  All of these judgements stem from the fear that I too have these characteristics within me that I have already judged as my “shadow” and have been trying to keep them hidden and starving, locked away from all to see.  What a gift!  What a beautiful gift to see your judgement as what it really is.  If I can remember each time I find myself judging something or someone that it is just the ego being triggered.  This is just a gift showing you that you have a belief about this, about yourself, that you are not good enough or are wrong.  That there is something about you relating to this that you believe you have to hide, that you believe to be “bad” or “wrong”…..Because if I can get there, I can center and connect with truth and love and nonjudgement and acceptance.  I can bring out that shadow I have been hiding and send it love and understanding and acceptance.  And that is where the true healing comes in.  Once I can accept and embrace that shadow and bring it out of hiding, it shifts and changes.  It doesn’t hold that dark power anymore.  It transforms into magic and love and connection.  It makes me stronger and so much more authentic.

So, thank you Gabrielle Bernstein for this wonderful book!  Thank you judgement for showing me fear.  Thank you fear for showing me my shadows.  Thank you shadows for showing me where I need to send extra love and acceptance.  And thank you for this entire process for showing me ways to be more authentic and accepting on this beautiful day!

Well this just happened...

I don't think there has been any sign of this coming, even looking back now with hindsight 20/20, and I am the Queen of seeing signs....So, surprise, Alissa, You are starting up your blog again!  Welcome back.

I haven't looked at this in years.  I haven't reread any of the past posts.  Another day I will.  I am excited for that day to see just how far I have traveled in such a small amount of time.

Looks like I am starting a little ahead of schedule (if there was one) as people usually start new year "resolutions" on the first day of the new year but I have never been like everyone else so it only makes sense I am doing this my own way and in my own time.  I was just journaling and felt the need to "put it out there".... so here we are!

I have chosen 2 words to carry and embrace through 2018: 

AUTHENTICITY and ACCEPTANCE

For me this means just what you probably think it does, but there is a depth to it that might not be so obvious.  This past year has been about healing and returning to ME and I have needed to retreat from a lot of people, places, and things in order to do this.  I needed space and distance to figure out what was truly mine and what I had only believed to be mine.  I needed to learn to make space for myself again.  I had embrace all my dark, all my confusion and all my hurt.  I am still learning and evolving of course, but (as scary as it still is) I am feeling it is time to come back into that world again.   This means I have to learn how to carry all that I have learned and this new space I have created with me and not lose it when I am bombarded with all that is out there.  I have to be aware when it is my energy, my emotions, my beliefs and when it is someone else’s.  I have to stay grounded and connected to my truth even when I am being triggered by someone else’s.  I have to stay authentic even when it is not easy.  I have to keep my heart open and my ego in check and most importantly, I have to love and forgive myself when I fail at all of this, because I will, time and time again. 

So, all of that above is just attempting to explain where I am coming from and where I am thinking I am going…..BUT it’s all irrelative anyway because all that really ever matters is where I am!

Here is where I am:

What about instead of judging others and trying to change their actions and beliefs, we changed something inside of ourselves?   We became more of the person we believe others should be?  We did more for the causes we are fighting for and believe in?  We paved the way and showed how it is done?  Just because people speak or come off a certain way or even believe a certain way doesn’t mean they are really that way…there is so much we don’t know, so much that is hidden (even from themselves) on who they really are or how they got to be the way they are.   “It’s important to remember that people are always doing the best they can, including you.” Louise Hay

What if we just gave them the unconditional love and acceptance we are all so desperately seeking?

Show them the nonjudgement you wished they practiced and showed to the world

Donate that time / money / energy you wished they would donate

Radiate the love and unity you wish they would encompass

I cannot change any of you BUT I can change myself!  And that may in the end truly change someone else!

What is hope, exactly?

I've spent most of the past 2-1/2 years in a bubble.  A hope bubble.  It was popped last month and I haven't been sure what to do about it.  Then I started to question what hope even is and at what point it is appropriate and and what point it just becomes yet another device I use to get through my day.  Hearing the words : these drugs aren't working.  well, it threw me for a loop.  I always had those drugs to fall back on.  They were working.  This was it.  I just had to get Cole through the next couple years with no serious lung damage and I believed that it would all be fine. 

Next chapter, we join the thousand of other families plagued with this disease without a cure.  Yes, we are so much farther along than most of them....so much they would scoff at my comments.  Their loved ones barely made it out of diapers or grade school.  But this is where our journey starts, after the loss of so many. 

It doesn't stop hurting.  I thought somehow it would. 

The crawl is tomorrow.  Danny's anniversary of his death is tomorrow.  It's just bringing it all up.  People don't get how it feels.  They don't know that the crawl is so bittersweet for so many of us, we cry in the days leading up to it.  They don't get that a sister will be mourning her baby brothers death.  I am glad they don't, they wouldn't want to go.  It's still there though.  It's still always there.  Just send a prayer out to those that hurt.  They will feel it.

The outsiders

Well I don't much fit in with the sick world.  We've been too healthy lately.  The meds and therapy have become routine.  We forget we're one of you.  I know, I know..."enjoy!" or "screw you" or "must be nice"  We are, yes, and yes it is.  But I don't forget.  Promise.  You mommy's who are awaiting that surgery or wondering if your "baby" will get those lungs she needs to live....I don't forget about you.  But, I also don't get it either.  I still get to live in the well world where my biggest fights are about putting on shoes or going to swim lessons.  Where a doctors visit doesn't mean seeing doctors I can't pronounce or spell.  It may be us one day....

we go to Iowa City tomorrow.  I think I'm handling this one the best yet.  (we'll see! ;))  We have been SO blessed and i know that.  To the mommy's and familes out there dealing with illness my heart goes out to you.  I pray for you and yours.  Stay strong.

well...

I usually freak out before the appointment....today it was after.  Just want to say I hate CF.  Cole's doing fine so far, I am just feeling weak and negative anyway.  Jenna's writing a paper on it and I couldn't even get myself to read it for her....I don't want to hear what it does and how it does it right now.  I don't want any more reminders of what Cole has to face.  Strength will come back, just not today.  Today I get to shed some tears and feel the anger.  The children that keep dying make it hard.  The babies it takes....well. 

On a positive note, I have someone who will do a fund raiser for us.  Now I just need someone local who needs our help.  Please let God bring them our way.  Send a prayer out there for me, will you?

D-day 2 years out

2 years ago today my life was forever changed. On March 31st, 2009 we were told that our youngest son, Cole, who was 12 days old has Cystic Fibrosis. If I knew then what I know now – well, we all know hind sight is 20/20. I am sure I would have still needed to go through the grieving process. I honestly don’t know exactly what would have changed. I wish I could say that I wouldn’t have gone through those periods of incredible horror, anxiety and depression but to be honest, I still have fleeting moments of terror when I remember just what we are up against. When the harsh reality of just what this disease does to their precious bodies and the ultimate fear of losing my son consciously pummel my mind. It is not that I would be relieved of all these horrendous fears. It is that I would be able to see what a blessing this horrid disease would also bring to my life. It is hard to even say that out loud…this curse also being a blessing. It is a lot easier to say since Cole has been and continues to be a beautiful HEALTHY little boy. It is a lot easier to say when the promise of a cure is so close I can almost taste it, just as I can taste Cole’s salty skin.


This disease is a lot of things. For our family we’ve decided to make it a double edged sword. We rejoice in what we’ve been given. I thank God for all the blessings he sends our way. You have to remember…there is no bad without good, no light without dark. Some people have a harder remembering what is truly important and living in the moment. I am one of them. CF helps me to remember. It helps me to live life fully.
So exactly what are these blessings I speak of??? How has CF brought any good to my life? Let me explain! Cystic fibrosis has brought me closer to God. The biggest blessing he sent was that I have yet to question why CF was handed to us. It is as if He put that knowledge in my soul and allowed it to be known to my unconscious mind. I don’t have the answer but I don’t need it either. I didn’t get mad a God. I didn’t question my faith. He used it to draw me in, to remind me how strong my beliefs are and how important they are in my life. It has helped me fine tune who I am and strive towards the person I want to be. (For example, I fully credit CF for motivating me to run my first ½ marathon last spring.) It has helped me to see my “reasons” for being on this earth. Cystic Fibrosis has made me a better mother, wife, daughter, friend, person. Cystic Fibrosis has allowed me to see what is truly important in life and keep these realizations in my daily life. It has helped to free me from those superficial perceptions of who I should be and what I should be doing with my life. It has allowed me to have empathy and compassion for others way beyond I was ever capable of before. It has brought amazing people into my life who share their triumphs, fears, advice and daily lives with me.
Unfortunately, my son will have a totally different outlook on Cf. For it is his beautiful little body that it will ravage. His lungs that it will disease. His opportunities that it will try and destroy. I just pray that I can teach him the beauty of what we are each given in this life. As ugly as it may seem, there is beauty in there. He is so strong and I believe God gave him CF for a reason. It will just be up to him to find it and do the best he possibly can with it.

As a side note: Happy 21st birthday Becky. Your beauty was so easy to see. Your diseases was not. I wish I could say I would have the strength to write like this if my son is robbed of his life before his 21st birthday. I will be honest – I think my outlook would change. I pray for your family. I know you’re looking down on all of us now smiling!!!

Gone but not forgotten

The days keep going by.  The amount of condolences and times I reach out diminish.  BUT it doesn't mean that I don't remember.  It doesn't mean that I don't still think of you and ache for those whose daily life will never be the same without you. 
It seems so many have been lost in the past few years.  So many untimely deaths (in our perspective).  I watch you grieve.  I watch you continue to live.  Your strength brings me to tears and to my knees in admiration.
I just hope you know that just because I haven't mentioned it to you lately, I have not forgotten.  I still imagine the emptiness that is left with their passing and the fight you battle daily to continue on and stay strong. 
The truth is I don't know what it is like so I don't know when and how to bring it up again.  I worry that this is a "strong" time for you and that my comments might make you weak.  I wonder if you want to hear those words come out of my mouth. 
I just want to say that I haven't forgotten.  That your loved ones are still in my thoughts and prayers regularly even though I don't talk to you or bring it up.  I want to tell you how much of an impact they have left on my life.  Each and everyone of them have helped and inspired me in ways I will never be able to tell - just as you have.
I pray for you to find peace with their death.  True peace if that is possible.  It must be helping because you are amazing!  You have continued on and live life to the fullest. 
I love you!

Pay it forward!!

Okay - first I want to say how much you have all already given to us - financially and emotionally throughout our battle against CF.  I love and cherish all of you.

BUT- I am still going to ask.

There is a family with 2 boys (the same age as my 2 boys) and they both have Cystic Fibrosis.  They have both been hospitalized this year.  Christian has been back in for 2 weeks this time awaiting surgery.  Their dad lost his job.  They have 1 car and the payment is months overdue.  If they don't make the payments they are going to lose that car.  They owe 1500.  I  believe that if we pull together we can help prevent this from happening.  I gave what I can today ----WILL YOU????

Check them out.  Her name is Jillian Koroskenyi and she is on facebook.  She has a paypal account at jillybean0319@hotmail.com  I know this sounds crazy but don't you think you could send a little cash their way?  I did and it felt great.  I hope it makes her sleep easier tonight.  Those hospital rooms are bad enough...then add your sweet baby who's sick and has a feeding tube and port...a port that came out last night and was awful.   She deals with this while her husband stays at home to care for their other son with Cystic Fibrosis.  Can you even imagine it?   

Lets make a difference.  Lets start one family at a time and make the world an easier place to be in. 

All my love and thanks!

Sometimes I see

Sometimes I get so accustomed to Cole having CF, I forget just what it truly changes for our family. People ask “how do you do it” or say “it must be so hard” and my usual response is “It just becomes normal. It’s your everyday routine and you stop remembering that it’s not normal.” There are still times though when it hits me just what it means and how our lives have been altered.


Today it was a phone call from my sister to me at work. She is watching the boys for me today and Cole had one of his VERY typical blowout “poop explosions”. As most know, CF poops are horridly foul. For Cole they are also very messy and “explode” out of his diaper onto anything in the same zip code at the time. As his mom, I can usually make it through without any gagging or cursing. Pj gags more often than not, but still handles it very calmly. Chaz doesn’t seem to be too bothered by any of it, and just uses the first wiff to inform us that Cole needs changed if he catches it before it makes itself our way. Nina and mom are so seasoned and in love with Cole, you would never even know it wasn’t normal. Anyway, the best course of action following one of these incidents is a bath for Cole and a nice scrubbing and disinfecting of everything in the vicinity of said explosion.


I have been so blessed that I can still go to work part time and I have my grandmother (and grandfather) to care for Cole. The only other baby sitter we really have is my mom. Jenna has started doing it more, but I believe this is her first true explosion experience. So, when she calls me today she just wants to let me know his poop consistency was off and they had had a blowout. We discussed what had caused it, if there is something we need to adjust or further look into and got off the phone. (Discussing Cole’s poop is a daily thing around our house. A note goes with him every morning letting Nina know what time he got up, had enzymes, ate, what he ate, if he’s pooped, how many times he’s pooped, what his poop was like, etc…you get the picture. Then I get the report back when I pick him up after work. We also talk about his treatments, how they went, if he’s coughing or congested…All an attempt to be proactive and detect something wrong before it gets too bad.) Anyway, back to topic at hand, after getting off the phone I realized just how much daycare really isn’t an option for us. We’ve never really considered it anyway, but I guess I had never thought about this happening in a daycare facility or with a baby sitter. There is no way that a stranger is going to tolerate these explosions. There is no way that Cole would get the care and love that he needs after one of these. There is just no way. It’s funny all the little things we never think about when it comes to the impact on our lives from this disease. The things you just consider “par for the course” and begin to easily overlook as normal.   And honestly sometimes I wonder if I am taking the easy way out by going to part time.  If I need to "toughen" up and be able to do it all...but times like this make me realize that NO- I am doing exactly what I am supposed to.  I am making sure my son is getting the best care and life he can.  It's still a bit disfunctional and we barely make ends meet but we're happy and he's healthy and that is what is truly important to us.

Quick vent....

I have about 5 minutes until I need to start the bedtime routine.  I just have to get this out...

Cole would only eat 3 bites tonight for dinner.  He didn't eat much for lunch to day either.  Tried to do his vest earlier and we only lasted about 10 minutes before he had a complete breakdown.  Then when I tried to give him his meds tonight, he took off running and through a fit.  Thankfully his dad was home so he took over (they always behave better for him!!!)  I know this is just one day and that earlier today he was so easy and compliant with meds but everytime he fights me or we miss something I just freak inside.  What if he starts acting like this EVERY time?  What if, what if, what if!!!!  Some days are just harder than others and some days I'm just weak. 

So much has been going on lately!  Eventually I will find the time to get it all on here. 

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.

Fear

Some days it's there before I even open my eyes. I think I begin unaware. Sometimes I forget that its not normal to wake up afraid. Today it takes me about an hour to realize it. My stomach is achy and it feels like the acids are making way into my throat. I realize the thoughts running through my mind are full of fear and compensations. Trying to make comfort with my fears is somthing I've grown used to. For some reason today I am remembering being 8-1/2 months pregnant with Cole and sobbing hysterically to my ob/gyn. I was telling her that I couldn't stop thinking that something was wrong with the baby. That something horrible was going to happen. She said that it was actually very common especially when pregnant with the second child. (I hadn't felt this way with Chaz). Then my mind shifts to the delivery room. I was so sure that something was wrong during his delivery I made my mother call my Aunt at 5 in the morning (she runs the whole birthing center). One of the nurses got on the phone and assured her everything was ok. Looking back now I have to question what I was picking up on....did I already know somehow, somewhere inside of me that Cole was sick?  Or do I just find the fear and negative in everything?


Pj told me again last night that we must let Cole learn to cry himself back to sleep. He's never cried himself to sleep or back to sleep in his whole life. His evening treatment is done when he's falling asleep everynight so that is a main reason. But, the truth is when he stirs and cries out I HAVE to check on him. I have to make sure that it's nothing more than a bad dream or wet diaper. And once I see his face, I can't let go. Thoughts like "he's already going to have enough pain in his life, he doesn't need anymore" or "what if this is an indicator that something is wrong. I better hold him or sleep with him to make sure he's okay" take over. Very rarely does it even put me out to get up with him. I see it as a blessing. I am lucky to get this time with my angel. 
 
One week from today is Clinic.  We're meeting with a surgeon.  I'm pretty sure between that and the doctor visit for Chaz yesterday I know why I'm figdety and anxious. 

more emotional vomiting!

So, I feel stronger, right? yeah, not so much.  Let's talk about reality.  Reality is so different for so many different people and yes, it is hard to understand other's reality.  When you are "one of us" though, you just get it...or you spend your days trying to pretend that you don't.  I offended a friend when I questioned why he had to die.  Not really offended, she just said she realized she wasnt dealing with all the questions and emotions from his death.  It just didn't fit in to my plan.  But the more you see people die before what we are forced to categorize as their time the harder this disease gets.  I deal by making a framework in my mind.  Cf is a fucker.  It doesn't follow my framework.  It kills who ever it wants when ever it wants.  The bottom line is I don't really think I can make it through losing a child.  There, I said it.  I don't see myself ever being ever to go to work and pretend like their deadlines are important again or caring about them.  I don't see myself finding value in whats going on with the PTA or the school team.  The truth is I don't see myself being able to function much at all.  I wouldn't have a choice in a sense, Chaz deserves a life.  But I don't think I could ever pretend enough to make his life a life.  So there, I've said it.  I don't know how you go thru this.  I don't think I can do it.  I DONT WANT TO FIND OUT!!!!!!!!!!!!  Don't make any more parents have to find out.  Please GOD lead us to the cure.  Allow these people to live! 

A nice emotional vomit!

I can’t even focus, especially not on anything else. It comes like a smack across the face. I was just living my life, going thru the daily grind and WHAM! Out of nowhere I am hit so hard I have to remind myself to breathe. My chest is so tight it is hard to really move any air in or out of my lungs ~ the breaths are shallow and superficial, the way I try not to imagine my sons. I’m now on hyper alert….constantly scanning everything around me for more incoming blows. Everyone and everything becomes a possible threat. Afraid I am going to miss something and my world is going to tumble down around me. It doesn’t take much to get me here anymore. There are enough memories stored to blow through the flood gate in seconds, taking down all the walls I try so hard to keep up. And it’s so hard once I am back here to remember how I ever thought I could escape in the first place.
Something as ordinary as getting the mail sparked this fire. It was as simple as a letter from the insurance company. My golden ticket had arrived. Cole has been approved to keep his vest for 3 more months. I had just read a CF mommy’s blog where all of the sudden they have denied them coverage for their vest. Nothing’s changed ~ her little baby still has cystic fibrosis. I don’t know what loop hole the insurance company has discovered that may possibly get them out of paying thousands of dollars or if it is just time to make her go through an appeal in the hopes she’ll fall apart and won’t be strong enough to jump through their hoops and win. But, this is all too common and possible. So, when I opened the letter I was initially happy to see such wonderful news. It was after I set it down on the passenger’s seat and started to pull out of the driveway that I began to emotionally vomit. I was so angry. I was so sad. The anger gave way to tears and I allowed these shameful feelings to surface and flow out of where I try to keep them hidden.
The truth is, no matter how grateful I should feel that the insurance company is going to pay for 3 more months of Cole’s vest, I don’t. I mean I do, but there are so many other stronger emotions that come with that letter. There is sadness and grief. This is just another reminder that my child is sick and needs these kinds of devices to stay alive. It is hurtful that every 3 months they evaluate Cole’s need for this machine and the approval letters don’t get any easier to take, if anything they get harder. Then there is anger. Who are these people that get to decide whether or not my son will or will not get treatment this month? This year? They don’t know anything about him. That medical file doesn’t tell you whether or not chest percussions are going to keep him healthy. It sure as hell doesn’t tell them whether or not he’s been using it like he should, whether it makes him cough or he’s clearer since he started using it. Then there’s the guilt for feeling this way. I should just be happy he has insurance and a vest. That is the worst part of it all. I have it “good” in the scheme of things. It’s just hard to remember that when it’s my sons life and health that we are dealing with.
I pulled myself together though and went on with my “everything is in control” façade. It ran thru my mind all day but I kept it out of view of everyone. But, It was enough to make the next tiny tap knock me to me knees. So when I realized that I was not sure if the boys had been vaccinated for pneumonia I called the pediatrician right away. When they returned my call, I was told that there was no record of Cole having this vaccine. I asked if he should get it. The woman on the phone was very put off and said she would have to ask the doctor. (how dare I ask her to do this – it was only her job responsibility) but her demeaning bitchiness got under my skin. I already felt like a failure for not knowing if and when they had these shots – not being on top of everything a mother should be on top of. Her insinuating my short comings were putting her out was just another blow to a mom who was already just trying to stay standing.
This is when it really hit me…the memory of last winter and all we had to deal with. The battle to find out if Cole needed the synagis shot. The fear that had I not been talking to other CF moms I wouldn’t know a thing about it. The anger with the pediatrician for not having a clue about CF and asking me what to do or telling me to call the clinic. The clinic not giving me all the information or telling me it’s the pediatrician’s office we need to deal with. Then the battle to figure out if it would be covered by insurance. Then we weighing, the ordering, the scheduling – the shots every month. The bills. The insurance and the pharmacy telling me completely different stories and sending me large bills. EVERY month was the same thing, a fight to get resolved. My job. The realization that it was my responsibility to make sure my children’s health was being taken care of and I was not doing my job…or the fear that I would mess it up.

I'm fine again now.  It's been a couple days.  I've allowed myself to remember the struggles and fears.  I'm strong and ready to fight when the new blows come my way but it doesn't mean there aren't days in between that I fall apart.

Walk the Walk

Last Friday a friend of mine told me one of her closest friend's son was diagnosed with stage 3 cancer.  I had  had a couple drinks and when she said she would be getting tested to be a bone marrow donor, I said I will get tested too.  The next day I was thinking about the horrible news and the conversation.  At first I found myself thinking of the reasons why I wouldn't actually be able to do it...it would hurt, it would cost money, it would make me miss work or be away from the kids.  I told myself the pain I would handle and I could look into the details before doing anything further.  Monday morning (without any research into the details at all) I found myself on the registry website filling out the application.  I realized something....this is exactly what I have been feeling and talking about lately.  This is my chance to walk the walk and not just talk the talk. 

I believe we are all in this together.  If we could just become truly aware of this life would be so much nicer!  It doesn't matter in the big scheme of things if it's the boy next door or the boy across the world.  It doesn't matter if its CF or cancer or AIDS.  If people are suffering and dying then we should be doing something to help them.  I can't imagine what the mother of a child with cancer feels like when her child needs a bone marrow transplant and there isn't anyone to give it that is a match even though there are millions of people everywhere who could possibly save her child that are just not willing to try. 

CF is different...I can't offer my lungs to the masses that need them.  I can only give financially and emotionally.  I can take care of my son and put him in appropriate clinical trials.  I can sign up to be an organ donor when I die.  But with cancer and other diseases there is something I can give that I wont even miss that could possibly save someone else's life.  Some one else's child. 

In a couple days I will recieve my kit in the mail.  It is as simple as swabbing the inside of my mouth and sending it back in.  Then I will wait and hope that I am a match to someone out there in need.  It is free.  It is very easy.  It may be painful but I will just think of the thousands of children who go in every month to have spinals or bone marrow transplants and my pain will be irrelative. 

Want to join me?  http://www.marrow.org/

Happy birthday Danny!

Fall used to make me think of football and bon fires.  I guess from now on I will think of Danny and CF.  September 25th is Danniel Ridenour's 30th birthday.  He's just not here to celebrate it with us.  Danny stoppped fighting for every breath on thanksgiving day last year.  He had Cystic Fibrosis.  He was my friend Cassie's little brother.  He was a son, a husband, a brother, a friend.  He's gone.


It's hard to comprehend really.  Danny wasn't ever sick with the "normal" cf stuff.  He was hospitalized a lot but it was always bowel obstructions.  He didn't ever culture MRSA and didn't culture pseudomonas until after he was out of high school.  He also didn't keep up with his chest percussions and doctor visits like they say you should.  But it just didnt really make sense...he went down so fast...


I got to see him a couple weeks before.  Cole had his clinic visit in Iowa City and that is where Danny was treated and hospitalized.  At this point he was living there...a small room with no view where his wife and sister would come to see him when ever they could.  I went alone while Cole was under sedation and having his first infant pulmonary function test.  I fully gowned and masked myself  before going into his room...there was no way I wanted to be the reason he or Cole cultured something new and was way too aware of the risk.  He was on oxygen pretty much all the time at this point.  We talked about designing a mask that would allow him to wear his glasses and be able to see while on the bipap.  He would pull of his mask and fight to make words come out.  Then slip it back on exhausted.  He hadn't been eating but promised he would that day.  He hated feeding tubes and refused to have one.  Still, he seemed positive and upbeat.  I was convinced he would be walking out of there within a month.  I had started to read about and research lung transplants...I really thought that was where this was going.  His lung function was very low but he still didn't qualify for the transplant list yet.  He'd also been on steroids most of his life so he wasn't a good candidate but it just seemed like that was the next step in his battle.  Looking back now, I see it.  I didn't see it that day - or maybe I just couldn't admit it then.


Danny was done.  He was tired of fighting.  He was at peace with his life here and ready to move on to the other side.  He was just holding on for those around him.  It makes me mad at myself now looking back.  I sat there and tried to pump him full of my ideas of fighting and living.  I couldn't even imagine then that that was just one option....that there was another choice to consider.  Selfishly it was too hard to imagine that Cole would ever be at a point where we stopped fighting and allowed him to die peacefully.  I still don't know if I could do it.   I would like to believe that I could.  That my faith would be strong enough.  I hope I don't ever get to find out. 


I talked to Cassie two days before thanksgiving...she knew.  She even said (jokingly) it would be thanksgiving.  It was.  They spent those days in the hospital by his side.  I don't know how she did it.  I was at Nina's helping in the kitchen when my cell rang.  It was a number I didn't know and my heart sank.  I knew who it was and what they were going to say.  I still found myself gasp "NO" when I heard "he's gone".

We were having our first annual "Crawling for a Cure" CF bar crawl the weekend after thanksgiving.  My sister had put it all together.  We had a hundred shirt orders and even more people who said they were coming.  On Friday I went to Cassie's w/ food and several boxes of tissues.  Her family was assembled there to grieve.  Her mom had flown in from California.  That's when it all made sense.  We would have a candle lit vigil for Danny at the bar crawl.  We would dedicate the night to Danny.  A celebration of his life - not a mourning of his death.  Her family was excited.  I think being able to put your energy into something positive and fun was a great contrast to the fact that they were planning his funeral arrangements.  

So, here we are almost a whole year later.  Danny's 30th birthday is only days away.  His wife has moved away.  His sister has continued living.  Life goes on.  But it doesn't mean that he isn't missed or remembered daily.  But it just goes on without him.


We will be having our second annual Crawling for a Cure the saturday after thanksgiving.  We will have a candle lit vigil and celebrate Danny's life.  We will say a prayer for all of you out there that battle this disease every day of your life and for those who love you. 

Let your soul shine

Most things in this world are not simple, black and white or easy. CF is no different. There is no typical CF case. I know people who make it until adulthood with no hospitalizations, no real health issues. I also know of several children who don’t make it to the double digits or children who make it but spend most of their time in hospitals or sick. There are no answers to “what to expect” or “what will my child’s life be like”. This was the hardest part for me after the diagnosis. I so desperately wanted someone to tell me the answers to all my questions. The more questions I asked it seemed the angrier I got. They were trying to answer me the best they could. The problem was that there were no answers for my questions. I wanted to know things that only God knows ~ things that are not for us to know while we’re here. The truth is that knowing these answers wouldn’t help anyway. It wasn’t going to stop the pain and fear that CF and life brings with it. I didn’t actually need the answers to the questions – I needed to change my attitude and perspective. I needed to find my faith. The most beautiful thing about life is that a lot of the time your entire world and situation can change by you just changing the way you look at it. This is one of the most amazing gifts we have been given – yet so often it is overlooked. I think that is because it is not as simple as it sounds and as much as we’d like to deny it we tend to hang on to our fears and faults and feed them instead of handing them over to something we cannot see or prove or control. But the sweetest part is that if you get to a point you can hand it over you become free. Free of all that burden and fear you carried. Free to actually live your life and enjoy it. Free to let your soul shine for the world to benefit from.