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.

This one's for you Oma!

so my blog doesn't show the whole truth...it may never. one thing lacking that is catching my attention is my mother's role in our life. She's used to being "the wind beneath our wings" with no acclomades but that doesnt mean i shouldnt talk about it. Most days only happen the way they do because of her. truth is that long before I knew it, she played the pivital role of assuring my children were getting the best life possible. currently, she is putting in at least as much time, energy and love and PJ and myself. For most families this sounds crazy. For mine, just the way we were raised. Mom wakes up every week day and her first priority is my children. Around the time most people get up to go to work, she does too...we just don't pay her. She arrives here and helps to ensure the boys have the best life possible. Then, long after her "shift" of dealing with my two drama never ending children she continues on....truth is she is more of their mother than most moms are to their children. And very often her mothering continues into the night until the next day when it begins again. Her motives are simple...she wants them to have good lives. When you add CF into it the tasks and responsibilites multiply tenfold. And she's still balancing her life and her mothering her own children thru it all. So, here's to you mama! Your wisdom, experience and unconditional love are more than anyone could ever wish for. Thank you! I am so grateful for EVERYTHING you do and so proud that I get to continue to learn from you as a mother and a woman. You are amazing. I love you!

Life isn't fair!

No, it sure isn’t. But that doesn’t mean I can’t try and tip the scales to even it out a little. I hear people with CF say a lot that they are just like everyone else. And that I should not treat my child with CF any differently. Hard to do when you have to make them take a gazillion medicines and give them chest percussions and nebs a couple times every day! (On top of the million other things they have to go thru!) But, I do think there is a very true and valid point here. Yes, Cole’s life will be different than Chaz’s ~ but only to a point. So, I decided that everything else needs to be the same for both of them.
One of the first times I dealt with this was bath toys. Yes, this blog post will revolve around bath toys! Chaz had always had bath toys. Most of you know how much kids love to play with toys in the tub! Once Cole was old enough to play in the tub we had to figure out what we were going to do. Bath toys for Cfers are a no-no. Water can get inside them and bacteria can grow so it is advised not to have any. At first I kept them up and only Chaz could play with them. Then I realized a couple things. I did not want to have different rules for each kid. Life is already unfair enough – I didn’t want to add to it! I also did not want to magnify to the boys that Cole has this disease and how much it is going to affect their lives. Also, the truth is that if Chaz is exposed to bacteria – Cole is probably going to end up exposed to it as well. So, I needed to find a solution that was the same for everyone involved and sanitary. I threw out all the toys that could possibly hold or absorb water. I kept the ones that I can put in the dishwasher. Now, every couple days we run them all thru the dishwasher and sanitize them and in between we rinse them well and keep them in a mesh bag that allows them to thoroughly dry out. This might sound stupid and trivial but it was a pivotal point for me as a parent. I will need to make a million more of these decisions along the way and I need to have my framework clearly defined ahead of time. And yes, Cole’s life is going to be different than most but that doesn’t mean that I can’t do what’s within my power to make it the same! Our next battle with this is food. We have already started explaining to Chaz that he will not be able to eat and snack whenever he wants. Cole has to take enzymes (pills) any time he eats. The enzymes work for about an hour. He can only take so many per day or he will have bad side effects. So, it is important that Cole has a regular eating schedule. Also, it is important that Cole gets more calories than the average person because his body has a difficult time absorbing the fat and nutrients in the food. The boys will have to agree on when they want to have snacks in between meals. They are always allowed to eat raisins or fruit though because Cole does not have to take enzymes with them. (I love this!) Right now this is not really an issue since we still dictate their eating schedules but when they are older and eating us out of house and home this rule is going to be VERY important.

So, no life ain’t fair ~ But I still want my parenting to be !!

Oh yeah - Cole and I both got what Chaz had but I am SO HAPPY to say that we are all doing FINE now and I think it's run it's course!  Amazing!  Cole just continues to amaze us!

Big Surprise (in sarcastic font)

Well, one week of school and Chaz is sick.  He's actually had a nasty sounding cough for a couple weeks but he isn't coughing very much so I hadn't taken him to the doctor.  Saturday night (after his awesome birthday party) he ran a fever.  So, this morning I made him an appointment with the pediatrician.  He seems fine and hasn't coughed lately.  I can't get him to cough on demand but hopefully if there is something wrong they can tell without hearing that nasty croup sounding cough.  Just praying it's nothing and Cole does not get it - anything respiratory always scares me.  It's going to be a long year! 


Thank you so much to everyone who came to Chaz's birthday party and all his amazing presents.  He's sitting in the living room right now surrounded by all of his dinosaurs having a great time playing.  He said it was a "fantastic" party and he had "too much fun".  I will try and get some pics and videos posted this week. 

Lock down no more!!!

Here we go again….back to school. Chaz started his second year of preschool Monday. He has the same teacher as last year but his friends have gone on to kindergarten or moved away and it is pretty much a whole new class. PJ took a little video the first day for me to see. He is smiling as he lines up on the wall. What a difference a year makes. It took him months last year to be able to go in without crying or getting upset. I wasn’t even allowed to drop him off because he would just cry more. Now he’s an old pro! (Fingers crossed this continues!) When I went to register him last year the first thing the one of the teachers said to me was “you know they get sick, right? There are a lot of germs and their first year is always a bad one. We can’t keep them from getting it.” She knew about Cole and I am sure she was just trying to make sure I knew what we were getting into by enrolling him. I knew…it still made my stomach turn. I still struggle with this issue today. Knowing when to protect them and when to just let them live their lives. I knew we couldn’t completely stop living life because of C.F. My gut kept nudging me forward though and telling me this was what we were supposed to do…so we sent him to school. He was sick a lot last year. Luckily, Cole didn’t get everything he brought home and stayed healthy. But, that may be because I pulled Chaz out of school for an entire month.
When H1N1 started showing up in the Quad Cities there were still no vaccines available. I no longer took the boys to the grocery store or mall or restaurants…places where there was a good chance of exposure. Once it got to PJ and Chaz’s school I decided it was too much of a risk. Since PJ had to go to work it was very likely he was going to be exposed. Once the first child in Chaz’s class tested positive, I pulled Chaz out of school. When I thought it was really going to spread around the school, the boys and I moved in with my grandparents so that we would not be exposed to what PJ was bringing home. My grandparents very rarely leave the house so they were safe. It was hard…we were pretty much locked in 24 hours a day for about a week. My gut was just telling me that I needed to do this and it was worth it. By the end of that week the vaccine was available for children with compromised immune systems. I hurried and got an appointment for the boys. Because of Cole's CF the clinic suggested we all get the shot (dead virus) and not the mist (live virus) which made things a little trickier. They would only give Chaz the shot if he had some health issue and I knew I couldn’t send him back to school without the vaccination. So, on the spot that day when the county health department worker said “sorry, I can’t give him the shot unless he has a compromised immune system or asthma” I heard myself say “Yes, he has asthma!” LIE LIE LIE. He does not have asthma. At that point I couldn’t bring myself to say “no, I just lied” so I deceived my way into getting Chaz vaccinated too. Not something I am very proud of needless to say. Also, not the worst thing I’ve ever done.
Needless to say, I was so freaked out over the whole H1N1 thing that I went a bit crazy. The boys had to get 2 shots to be immunized so I kept Chaz out of school until after the second shot had time to get into his system. PJ and Chaz’s school never really had an “outbreak” like I thought it would. There were a dozen or two kids that got it…nothing big and no one got extremely sick or died. I still don’t regret my choice. It was just what I needed to do at the time.
About a week ago I heard on the news that in China and Europe they are seeing a mutated version of the virus that is not responding to their drugs. I started freaking out thinking “here we go again”. It was on my mind and making me a bit crazy for a couple days. The good news is I feel better about where we are this time around. I know that we are heading into another school year full of exposure to germs and who knows what the flu season will bring but I feel more relaxed. I think partly because Cole has been so healthy, partly because he’s older, partly because I have had some more time to learn how I am going to deal with his disease. There has to be a point that I let go of the façade of having control and just give it to God. It doesn’t mean I won’t continue to do what’s within my power to keep them healthy…just that there is a point where I have to let go. I have to allow my family to live and enjoy life. I know that I will struggle with this the rest of our lives and it will change as they grow and the situation changes. I just strive to allow faith ~ not fear ~ to dictate our lives.

The road to Lock Down

This brings me closer to why I held my family captive last fall. Why I quarantined my children and myself and wouldn’t allow anyone to see us. Why I didn’t even go to the grocery store for weeks. Why I lied to health care providers. Why even my husband was too dangerous to see or touch for days. The first time I remember really being afraid of H1N1 was in that hospital room. The news kept coming on and talking about the outbreak and how it had reached the United States. They kept saying how bad it could get and it wasn’t even flu season. They kept saying that people were dying. I knew that the hospital was a great place to get exposed to the virus. I was on guard for someone being brought in with flu like symptoms. I asked the nurses if there was anyone in the hospital that they suspected of having the virus. My son could barely breathe as it was. I couldn’t imagine what would happen if he got H1N1. But, he wasn’t ready to come home yet so we followed every precaution not to come into contact with anyone or anything while we were there. It wasn’t that hard ~ I didn’t want to leave Cole’s side anyway and seeing the other sick children was so agonizing. Since what Cole had was contagious, the nurses had to wear masks and gloves when they came into his room. We had to wear them when we left his room. Most people would probably detest that -I loved it! A visible barrier between germs and my son. Viable proof that we were doing something to help protect this tiny child.
On Friday afternoon we were released from the hospital. As I said before, it took Cole several months to fully recover from this illness. I will never fully recover. The memory of those days will forever live inside of me. I can only hope that Chaz has forgotten. Unfortunately, even when our minds forget our bodies and souls don’t.
The summer was pretty uneventful as I remember it. We were making our monthly trips to Iowa City to the clinic. He was on antibiotics for months back then. Any time he was congested and coughing a lot they put him on antibiotics because he is more susceptible to a secondary infection so he was always on something it seems like. I hated this – worrying it would harm him somehow or that his resistance to them would build. I also liked knowing we were killing (at least trying to kill) everything he was coming in contact with. I was still so afraid of everything – always on edge and just waiting for disaster.
The next big event was our first (and only) pseudomonas (Pseudomonas aeruginosa) culture. The boys and I were driving Nina to Kentucky to her sister’s funeral. (Rip sweet Margo!) About an hour and a half out of town the clinic called to tell me he had cultured it. She said she would be sending a prescription for a nebulizer, oral antibiotic and Tobramycin. We had only used a nebulizer at the E.R. or hospital and we did not have one at home. I told her we were heading out of town and wouldn’t be back for a couple days. She said to wait until we returned to start treatment. We would have to order the equipment and it would be easiest to do at home. All I really knew then was this was one of the “bad” bacteria ~ One that they had a hard time getting rid of and caused of a lot of the lung disease which leads to their death.
When we returned we ordered all our new equipment and medications and started. It was scary because it was all so new. Being responsible for administering these medications to your child is very stressful. I worried I would forget a treatment or he would fight me the entire time. I worried that I was not doing it right or would somehow mess it up. I worried that the drugs wouldn’t work. I worried that the drugs I was giving him were doing harm to him somehow. I just worried. Amazingly enough Cole has not cultured P.A again!!!

The next event was a couple months later. I received my monthly email after our clinic visit with our culture results. This time he had cultured MRSA (methicillin-resistant Staphylococcus aureus). I freaked out. I only heard of people having open sores or wounds that got infected with MRSA. I didn’t know that it was commonly found in people’s nasal cavity and mouth. At first I don’t think the clinic was going to do anything to treat it. I was a hot mess about it though and think I even said if they didn’t take this serious I was going to get a second opinion at another clinic. Our wonderful clinic director was no stranger to my freak outs at this point. (At one point I had a list of issues I took to the clinic for them to address. They handled me very well and did not get defensive. I think this is how I knew Cole is where he needs to be. They asked me to join the parent committee to make sure I was involved on the way things are being done. They didn’t avoid me or begin hating me even though I could be such a royal pain in the arse!)
The director assured me that they were taking it very serious, gave me some additional information about MRSA (probably even statistics) and wrote us a script for bactrim I believe. And once again, I am so happy to say that is the only time he has cultured MRSA!

When the bottom fell out (Part 2)

It was a long, long ride to Iowa City. The ride from the pediatrician’s office to the hospital was my first in an ambulance. This was my second. I rode along with Cole and the medics. PJ followed in our car. I was nervous to have him driving on Interstate 80 while he was scared for his son’s life and trying to follow and keep up with an ambulance. I felt so guilty for leaving Chaz behind. I barely explained to him what was going on and I know the day had been extremely traumatizing for him. I think I hugged and kissed him goodbye when he left the E.R. with my mother. Luckily, he loves his Oma & Papa and thinks it’s a treat when he gets to spend time with them. Cole seemed to have stabilized. He actually slept the entire way there – a true blessing. I talked a little to the medics. They were curious about CF and what it was. I told them what I knew and they complimented me on my knowledge of the subject. That’s just what you do when your child or loved one has a disease - learn everything you possibly can about it. And I still have so much more to learn. At one point the medic got out some paper work that I needed to sign. It stated how much the ambulance ride would cost and that I would be responsible for paying it. Knowing that no matter how much it cost, we would be making this trip, I tried not to look at the amount. I still caught a glimpse and saw that it was not in the hundreds but the thousands. I tried to push it out of my mind – it was irrelative. But I did finally inquire about insurance and if it normally covered trips like this. The medics assured me that it would and I let those thoughts leave my mind again so I could focus on what was important.
The University Of Iowa Hospital is huge. The ambulance took us to an area of the hospital I had never even seen. Even the medics seemed a little confused about how to get to where we were supposed to go. I think someone showed up to take us there or told us where to go – through corridors and hallways, elevators and double doors. I wondered if PJ would ever be able to find us. We had to walk by so many people on the way. It’s horrible to see their faces when they see a tiny baby on a gurney being wheeled in by medics. I tried to avoid making eye contact with them. Afraid if I did I would let out a horrible scream or just fall into their arms. Finally we ended up in the pediatric inpatient unit. We were brought into a room across from the nurses’ station. Again the room filled with medical staff. Identification bracelets were placed on both Cole and me. He was again being detached from some machines and attached to others. Cole was placed in the “cage” (a crazy crib with bars all over and things hanging around it and above it) that they use in those places. To my relief they left the sides down so I could get to my baby if I needed to. I stood next to him and a young girl started asking me questions. After I had answered a couple questions that I had already answered that day Cole began coughing and fighting for breath. This girl continued asking me questions (stupid stupid questions I have to add!) and was waiting for my response. When I realized that she only glanced over at him momentarily and back to me I lost it yet again. “Do you think we could focus on taking care of my baby before we do this?” I said in a nasty but desperate voice. She got my message and started tending to Cole but she managed to slip in a “you’re a crazy b” glance my way. I hated feeling so out of control but nothing was going to stop me from doing what I thought needed to be done for my child.
Again they got Cole stable. Even when he was stable it was absolutely horrifying to watch him breath. His chest was retracting - something I had never seen anyone do. Something I hope you never see – especially a tiny little baby. It looked like something out of a science fiction movie. They drew blood to test and hooked him up to an I.V. After a while the resident came back in to talk to us about what was going on with Cole. You should have seen my face when he told us that his illness had nothing to do with his CF! I was completely flabbergasted. Cole had Para influenza ~ A very common bug that goes around. We were told that because he was so young his lungs couldn’t handle it as well and that is why he was having such a difficult time. I still have a hard time with this. A part of me will always believe that his treachea malaysia and CF had to of complicated it and caused it to be the horrible mess that it was. We’ll never really know.

Those 3 days are so blurry. I know once Cole was doing okay and we were settled in our room they gave me a tour of the floor. The nurse said “Since you will be spending time up here”. She meant since Cole has CF and this is where he is treated she expects that we will be coming for stays often enough that I had better get to know the place. Was this really what my life was going to be like? Would I one day find that me living in my child’s hospital room is normal?

I didn’t like leaving our room. It was hard to be out of arms reach of Cole at all ~ Afraid he’d be unable to breathe and need suctioning. The little girl next door cried a lot. It was a cry of pain and so heart wrenching to hear. A boy down the hall was recovering from open heart surgery. Another little boy had been wheeled in during the middle of the night after a surgery of some kind. His father and 3 little siblings were in tow. I had to go to the kitchen for something and ran into them. The floor was at full capacity. Sick/injured children were everywhere. I couldn’t handle seeing them and their families and the only way to avoid it was to stay in our room with the door shut and the curtains drawn. I wonder if I will ever be stronger – if life will thicken my skin enough that bearing witness to other people’s living nightmares won’t be enough to make me run into our room to hide and cry??? I hope not.

My mom came up and stayed with us the second day. We wanted to try and keep Chaz’s life as normal as we possibly could so PJ went home the second night and Chaz got to sleep in his own bed. Having my mom there was huge! She even stayed up with him that night and let me sleep. In between treatments, medicines, diaper changes and feedings it was pretty much just sitting and watching Cole breathe – in and out – in and out. Each time another agonizing victory. I kept waiting for the retracting to stop but it didn’t. It took months for that to no longer be visible. It even changed the way it looked as he grew. It was a daily reminder of just how fragile he was and where he’d been. The congestion took even longer to go away. He spent most of his first year of life congested. I urged the doctor assure us that Cole would be okay. I needed him to tell me that I would be taking Cole home with me and he would be fine and he did. With that I was able to come back from that place I went when I thought I was going to lose my son. I came back – but I will never ever be the same. That was the day the bottom fell out. From that day forward I have ALWAYS been aware that it can fall out at any time. And no matter how good I think we’re doing I am always waiting for it to fall out again.

When the bottom fell out (part 1)

I have to be honest I cannot really remember what was happening or how I was doing in the time between the diagnosis and his first illness. I thought I was doing really well at the time but I know none of it had really become near a reality yet. It was not enough time to fully process even what the disease was ~ not to mention the fact my newborn son had it. So I can say with certainty now I was nowhere near being okay! I think I was just hanging on as tight as I could to hope and a belief that I was still going to wake up or someone was going to tell me that Cole would be perfectly fine. I was also still holding on to the belief that I could deal with this without completely falling apart.

My memory is probably pretty distorted. But this is the way things seem now, looking back. Those first days, weeks we had so much support. People were truly affected by our news. We received hundreds of dollars worth of gift cards for food and gas and even cash from Pj’s coworkers. It was truly amazing how much people cared and wanted to do something to help us out. We received gifts, cards and well wishes from friends and family. We were told we were added to numerous prayer lists. One of my girlfriends had a baby about a month before us. It was also their 2nd. I remember hearing how hard her husband (someone I barely knew) was taking the news. It was the stories like this that touched our hearts. The sympathy and compassion of our family, friends and community was amazing and overwhelming. The greatest gift I was given during that time was Jenny. Out of nowhere one afternoon right after the diagnosis she knocked on my door. She smiled, teared up and hugged me. She knew exactly what I was going through and without her even saying a word I felt that. Even though we hadn’t talked in years she knew what I needed. You see her son was diagnosed with CF earlier that year. Her story and “plan” are quite different from mine though for many reasons. (Sorry Jen – you’re getting talked about yet again!!! If you see 2 posts ago – it is Jenny and Jenny’s family that I am talking about and to. They have been through and continue to go through more challenges and loss then I can ever imagine ~ They deserve our prayers and admiration. They are truly amazing and strong!) One of our differences is that her son was diagnosed when he was around 9 years old. You see there was no CF newborn screening when he was born. There wasn’t even screening when my older son Chaz was born just 2 1/2 years before (and oh, I plan on telling you all about this and his CF testing later). So, Jen’s son had gone through life diagnosed with asthma. Until he started showing signs of pancreatic enzyme insufficiency, there wasn’t even a thought that it could be CF. This happens all too often with CF. There are so many symptoms that can be overlooked or diagnosed as something else. If you never have a bowel obstruction (as so many don’t) and are enzyme sufficient or your body is not starving itself to death it is easy to go thru life under the radar. I would be scared to know how many parents had their children taken away from them for failure to thrive because of undiagnosed CF! I could go on for days on the importance of newborn CF screening but I won’t. I am so blessed because I don’t have to – others have been fighting that fight and won. All 50 states now screen newborn babies for CF. One small step towards saving our children – or at least giving them the chance they deserve starting life. Anyway - Jen told me that day with conviction in her eyes that everything was going to be okay. It was the first time anyone had said that to me – or at least it was the first time I started to believe them.

My sister’s way of dealing with the news was to get very involved with our chapter of Great Strides (The fundraiser for The Cystic Fibrosis Foundation). In the 4 weeks between Cole’s diagnosis and our local walk she had gathered a team of around 50 people and had raised more than $7,000! Our wills were strong – we were doing everything positive we could think of and I do believe it was helping us get through the days. Our Great Strides walk was on April 25th and my 31st birthday was the day after. Team Cole received first place by bringing in more money than any other team that year – Our first year involved! After the walk we had a party at my mom and dad’s. That evening my parents watched the boys overnight so PJ and I could go out with friends and celebrate my birthday. In the middle of the night, Chaz got sick and was throwing up. My parents took care of him and called us in the morning to let us know.

I guess I have to insert here that I was already living a life a bit different than most people. At this point in Cole’s life, he probably hadn’t ever been to a store or even out in public unless he had to. He did not join us at the walk – Nina watched him. There would be too many people around and also there would be other people with CF there. For those of you who don’t know the ins and outs of CF – people with CF are actually supposed to stay at least 3 feet away from other CF’ers. And, if you are culturing one of the nasty bacteria, you really should not go to any place or event that there will be other CF’ers at. So, taking Cole to the walk wasn’t even really an option that first year. It was all still too new and scary. I was still on maternity leave and if I had to go to an appointment or the grocery store Cole would stay home with his dad or go to Oma’s or Nina’s. There just wasn’t any need to expose him to anything if we didn’t have to and for the most part we didn’t. We had at this point gone to Iowa City and met with the Cystic Fibrosis Doctors and nurses once. We felt good about what we saw at the clinic and were planning on taking him there for his monthly check ups and care.

Back to the illness - The boys had been all over each other the days before so I had a feeling that Cole had probably already been exposed to what Chaz had. Well, a couple days later he got sick. He was very congested and snotty and coughing a bit. That horrible Wednesday morning began like any other. Around 9 a.m. my grandmother (Nina) called me and decided to come to our house (PJ was at work) and help me out. I was still learning how to be a mother to 2 boys at the same time as well as one with special medical needs. The fact that he was sick was enough to throw my life into chaos. By the time she arrived, Cole’s breathing had become a bit labored. Thank God she came over. I don’t know if I would have recognized there was a problem as early as she did. We decided we should take him to his pediatrician. We all got in Nina’s mini-van and started toward the office. About 2 miles from home, his breathing worsened. At that point, my safety freak Nina demanded I go to the back of the van and get Cole out of his car seat to ensure he kept breathing. Anyone that knows Nina knows this was CRAZY. The woman won’t let you out of the driveway without a seat belt on – let alone an infant out of a car seat driving down the road. At that point I did what she said and held him on my lap in the back of the mini-van. I had no idea what I was supposed to do for him so I just kissed him, talked to him and prayed. Nina sped up and began running red lights! Chaz sat quietly and watched all of this go on around him – never saying a word.

We entered the office (with no appointment) and I said to the lady at the front desk my son was having problems breathing. Now, for you moms who have been doing this for awhile I am sure you’re saying to yourself – why didn’t you just go the ER? Well, this was all brand new to me and I guess I didn’t even think about it. Also, Cole went from a little sick to not breathing in a matter of minutes. Everything we’d learned insinuated that CF was not going to just kill him all the sudden. It was a slow deteriorating process that would take years, right??? We really didn’t have any idea what to do or what was going on.

Once the lady at the front desk saw Cole’s face, they rushed him into a room. And again - things get very foggy at this point. I know the room filled with doctors and nurses. I know I told them he has Cystic Fibrosis. I know they all seemed scared and were taking this very serious – scurrying around with medical equipment and asking each other questions. I know I felt completely helpless that I could not do anything for my son. I let myself stand along the back wall of the room out of everyone’s way. I know the idea that he may not make it started settling in my mind and I started to try and figure out how any of us were ever going to make it through this. I know I hated the fact that I was putting Nina through this. She had already lost 2 babies of her own and I could tell by the look on her face she was thinking we were losing another one. We were praying but I don’t know if it was silent or out loud. At one point she said to me something like “Sometimes there is just nothing you can do”. She was trying to prepare me for worst. I know that my 3 year old son was standing there with us, watching the chaos and sensing the fear. As they began giving Cole his first breathing treatment I called my husband and my mother. The pediatrician called an ambulance.

When they felt Cole was stable we were put into the ambulance. I was allowed to ride along with Cole. I think Nina took Chaz with her and PJ met us at the hospital but I don’t really even know. Cole was now on oxygen. I just glanced back and forth between the machine that told me his oxygen level in his blood and heart rate and his little face. They put him in his car seat and strapped it down to the floor of the ambulance. I sat on a bench on the side – way too far away for my liking. The sirens and lights were turned on and off we went to the nearest hospital.

In seconds we were there. Someone was wheeled out of a treatment room so we could be brought in. Again, numerous people filled our room. Some were asking me questions. Some were hooking up Cole to other machines. Some were just watching and listening. He was suctioned out a bit I think and then placed back on oxygen. The medics were filling them in on what was going on. I was standing nervously beside the bed. Soon he started having problems breathing again. If any of you have seen the movie Terms of Endearment- this is pretty much how I behaved at 2 different times while he was in the hospital. Remember the scene where Shirley MacLaine’s daughter is dying and needs pain medicine? She walks out to the nurses’ station to ask for it and when no one reacts she just starts screaming out of control until they do what she wants. Well, I told you I’m assertive, direct, controlling – I wasn’t joking. If I didn’t feel like I was being heard or Cole was getting what he needed I let the staff around me be aware of it – But at that time I was also out of my mind a bit and the only way I knew to do this was to become a bit verbally combative and loud. (This is also another huge topic – advocating for your child – I plan on discussing in depth on my blog.) When I realized no one had told them that Cole has Cystic Fibrosis I completely lost it. I thought this was such important information – how could the medics or his pediatrician’s not have informed the ER staff??? I let them know that I was appalled by their incompetency in their jobs. They looked at me like I was a crazy woman but I didn’t really care. They now were very aware my son had CF. Hell, the whole E.R. probably knew!

We were there for a couple of hours I believe. I can’t actually tell you much about it – I wasn’t really “there”. I think a part of me left when things got too tough. Or maybe my mind was just so overwhelmed I couldn’t possible think all those thoughts and be aware of all the goings on. When I look back now, it feels like I was drugged almost - Like they slipped me something to calm me down. Maybe they did!!! Or maybe PJ did!!! At one point, they asked me what I wanted to do. HA! What I wanted to do. I wanted to wake up from this nightmare! But instead I suggested they ask his CF doctor what we needed to do. This would be the first of many times that a Doctor asked me what I think needs to be done for my son. This is something that still makes me quite uncomfortable with the whole situation and something as I said above I will write about in detail later on – advocating for your child. When they felt it was safe for Cole to travel we were put in another ambulance. This time we were headed about an hour away to the University of Iowa Hospital where Cole is treated for his Cystic Fibrosis.

The diagnois

Since I started this blog when Cole was 15 months old, I missed some pretty important events in his life. Here’s a little stroll back in time at how we came to be where we are now. I will start with the day that forever changed everything I thought I knew about life...the day my entire world was picked up and put somewhere else.
Cole was diagnosed with CF through newborn screening. Thank God for all of you people who fought to get that passed! When he was 14 days old I received a call from our pediatrician’s office that we needed to go to Peoria for a test because his screen had come back abnormal. I asked for what and they said Cystic Fibrosis. I knew what it was – my friend Cassie’s brother had CF. I knew it carried a life sentence. I knew it was a genetic disease and that neither Pj or I knew of anyone in our families who had it. I thought it was just a mistake but was concerned just the same. I frantically got ahold of our insurance to verify coverage of the Doctor in Peoria as instructed and called the pediatrician’s office back. I told them that I wanted to go ASAP – they told me it could be weeks until they could get us in. I pleaded with the nurse to do everything she could to get us in soon. I knew I would not be able to exhale again until I had those test results. Within 30 minutes they called back with an appointment for that afternoon. I called my husband and told him he would need to come home straight away and drive us to Peoria so Cole could have the sweat test done. Nina came over and my mom came home from work and stayed with Chaz. I threw on maternity clothes since they were the only thing that would fit me, packed the baby’s bag and paced until PJ got home. The drive was surreal. An hour and a half of phone conversations with our family asking if they knew of anyone related to us who had CF. Telling myself over and over again it couldn’t be – it was just a mistake.




As we carried our tiny new born baby strapped in his huge travel car seat into the hospital in Peoria, I was suddenly aware of the other babies and children that were all around us. I started thinking, ”Why are they here? They don’t belong here, we don’t belong here. They could get sick – this is not a place for children especially tiny babies!” But when I started to look closer I realized they weren’t just passing through. They weren’t just visiting. They were here because their lives – or the comfort of which they would live their lives – depended on it. This was my first real glimpse into the “sick world”. How had I gone so long without ever really seeing this place existed all around me? Or probably more like how had I gone so long with blinders over my eyes so I wouldn’t see this world existed. Little did I know this would from here on be my world. And that one day not too far from then it wouldn’t even make me cry to say it. It would be a place I had become comfortable in. Well, as comfortable as you can possibly be in a place like this.



The sweat test is a strange procedure in itself but it is not invasive and does not hurt. I was a mess just the same – and it seemed to take forever. After the sweat test at the hospital, we were to go to the pediatric CF clinic. It was in another smaller building about a block away. It was far enough that we got the car and drove to it. It was on the second floor of a community clinic type place. It was run down and there were a lot of “run down” looking people there. I remember feeling their hatred or indifference as we walked through the waiting room to the stairs to get to the other clinic. Things get very foggy at this point. I remember the nurse coming to get us and getting Cole’s weight, height, temp etc. I remember her asking us if he poops every time he eats. I remember thinking she didn’t know what she was talking about and hating the way she was looking at us and speaking to us. I didn’t realize what I was picking up on then – her empathy, her sorrow for what we were about to embark upon. I just knew I hated her for absolutely no good reason. I thought I knew that soon I would be walking out of there with my planned life back to normal – proving all of their tests wrong. I knew nothing.



They placed us in a small room – no different than any room at your child’s ped’s office. A group of Doctors, nurses, counselors, who knows were on hand. I don’t know who was in the room when we were told. I don’t know if they were in the room before or after we were told. I do know that even though we do not go to Peoria for treatment – I was sent there that day for a reason. The middle aged woman who runs that CF clinic in Peoria!! If you ever have to hear this kind of news, and I hope you never do, it should come from a person like this. I don’t know what it was – that she was a woman and a mother – that she was just a wonderful person - or that she had done this so many times she had perfected it---whatever it was ---- I am grateful for her and her skill at informing 2 parents their newborn son has a genetic disease that will probably kill him. In my head it went something like this – “There is no good way to say this so I will just say it. Cole has Cystic Fibrosis. I am so sorry.” I know it sounds so stupid and simple but there was just something about her. I didn’t want to kill her or yell at her or blame her. And well, I think that in itself is absolutely amazing.



I’m usually very assertive, controlling, direct, even overbearing at times. I don’t think I said more than 3 words the rest of that appointment. They started going over some basics with us…the things we needed to know right then. Giving us the enzymes we would need to start giving him every time he ate. Handing us papers that started to explain the disease, the medications, the treatments. I think they offered or brought in a counselor. PJ stepped up and handled what needed to be handled, asked what had to be asked. I sat. I cried. I stared. You would think I would have gone straight into a panic attack – I did nothing of the sort. A trance like state took over for the most part. After the initial sobbing and gasps it was quiet, calm. Shortly after that I think we left. They don’t want you driving right away while you’re upset so they have you try and “collect” yourself before leaving. Luckily, they know you will not remember most of what they say to you that day so they don’t say too much.
On the hour and a half ride home I sat. I cried. I stared. Oh, and I broke the news to the rest of our family.  That was kind of like taking the knife that had been shoved into my chest and pushing it deeper and deeper into the gashing wound. And Then, I sat. I cried. I stared.  I think for the next couple weeks, in between break downs and manic drives to educate myself on CF I sat.  I cried.  I stared. 

Darkness

It’s been awhile…… I think it’s a combination of not making the time and not feeling the drive to write. It is usually a good thing that I don’t feel like I have to spill the inner ramblings of my mind and soul in order to try and make some sense of it all. I think this time it is just that what I am trying to process is too hard to write about. It’s not actually mine – just mine to react to - and who am I to even react to it or talk about it. It isn’t me who had my precious child taken away from me in an instant. It isn’t me who lost my mother and my nephew in the same year. It isn’t me who has so much illness and disease surrounding me that it seems no one in my family is safe. It isn’t a 16 year old me who went for a ride with her first love last Friday night and ended up the only one making it home alive. But I keep finding myself grieving and questioning and reasoning with God as if I have some idea of what any of these people are going through. I am so far removed from the horror, the grief, the loss and I’m still feeling my chest fill with fire and the tears well. Yet I cannot begin to pretend to feel one millionth of what these people feel. I feel guilty for having grief - as if it is not mine to have.
I am lucky – I am safe – I am spoiled.
And knowing this I tell myself to stay in the moment. Enjoy each diaper change, each book read, each time the boys disobey me. I am blessed to get these moments.
But flawed as I am, I cannot always stay there. Every day I find myself wanting a break or wishing a moment away. If I were the one this happened to would I ever understand how moments can be wished away again? What would they give for that moment……



So to you who are truly hurting - who are really going through this  -
I am so truly sorry for your loss. I pray you can somehow make peace with your “plan” and I am so sorry that it is such a difficult one. I will not attempt to say any more than that. I do have a shoulder to cry on, arms to hug you, and ears to hear your pain and they are always yours for the taking.

Clinic Visit Results!

Just opened up my email to find the “final results” from our clinic director. My heart seriously stopped beating for awhile when my eyes saw the words. It always does…probably always will. Awesome Awesome Awesome. Final Culture is negative for bacteria and all blood tests were normal. I have been transported to a very serene and calm place…my world is intact right now. Everyone is healthy and happy and thriving. We are all so full of life and excitement – these are the days you live for. These are the moments I hope to NEVER forget. I’ve scheduled to have our family photos taken next week by a friend’s sister. Her work is amazing and I am so excited at the thought of capturing this time in our lives on film. The boys are at such amazing and fun ages. Every day they do or say something that blows my mind and makes me crack up laughing…as well as question what PJ and I have gotten ourselves into! If I’ve learned one thing over the last year and a half (and oh have I learned way too much!) it’s to fully embrace these moments. To allow yourself to bask in the sunlight of health and happiness when it’s shining on you….I’m basking!

First light

Babies…babies…babies!!! Nothing gives hope and lightness more than newborn babies. They’re all around me this weekend. My bestest friend from college is being induced on Monday with her second. I think it must be a crazy flood of memories for her. Her oldest daughter is in jr. hight school so she has been out of the world of diapers and formula for years now. I think it’s probably a little scarier going back knowing what you know as a mother….remembering what is to come and how hard it all can be. The beauty is that it is all so very worth it. Then on Sunday I will be going to another girlfriend’s baby shower. It is her first and she tried and tried for this sweet blessing. I think she was about to give up when she found out she was pregnant. All the sweeter the gift in the end – but I know it was hell while she was going through it. So – to you both – Congratulations! Welcome (back for Tanja) to this crazy world of bringing life into the world and helping it grow and blossom. Call me when you’re at wits end because of lack of sleep and crazy hormones – I remember! Call me when they do something for the first time or fill your heart and soul so full of love and bliss you think you’ve reached heaven – I remember that too! And most important, at the end of the day after you’ve given them everything you have and you find yourself thinking of something you haven’t done or some way you fell short embrace your humanity and tell yourself with all the confidence in the world “I AM A WONDERFUL MOTHER!” because you are and your children think so too!

CF momma talk!

I know that there are SO many of you out there who don’t even have insurance or insurance near as good as ours is. I know that I am blessed to have what I do have. It doesn’t mean that I don’t still need to vent every now and again.




Ok CF mommies – here’s one I know a lot of you deal with. A fundamental key to keeping our CF kids healthy is keeping their weight and nutrition up, right??? And most of you struggle with this continuously, right??? And there are studies proving that keeping them at or above weight also keeps their lung function up, right??? So, then why is it that our insurance will not pay for Cole to see a dietician? Even after I appealed and our Doctor wrote a letter to the insurance company explaining the necessity of it! At this point it isn’t even about the money we have to pay every time to see her – it’s the principle behind it. Or maybe that I didn’t win the fight – probably both. Every time you go through the hassle of appealing the denial of a claim it’s just kind of like rubbing alcohol on an open wound. Then when you give them all the proof that this is a valid need and that it will probably save them money in the end and they still deny you it’s just a bit incomprehensible. I can’t imagine what parents feel like who’s children die because the insurance company is denying them the coverage of a procedure they need to live.

So much to say…so very little time.


I really don’t know how you mommies do so much. Treatments, housework, work, care for and hang out with your kids, have time for yourself, blog, sleep…oh yeah and spend time with your husband. (And why can I always find time to eat???) Some days it seems like there isn’t enough time for just the absolute necessities. Working full time again this summer is really killing me! I have just had to admit I cannot do it all and work full time. (Let’s be honest, I can’t do it all period!) The bad part is I am kind of wishing away the summer because of it. STAY IN THE MOMENT ALISSA - This is my mantra - This breath right here!

The boys are on a sleeping strike right now so I think that is multiplying everything. No one is napping - haven’t been for DAYS. And they are staying up so late. My last post was the beginning of it. Thank God I embraced it and let it be – it is now happening every night. Cole napped for the ride home from Iowa City yesterday – and that’s all. He didn’t fall asleep last night until 10pm. The great news is that he is now sitting through his vest pretty nicely. If we put in a Baby Einstein video he’ll usually just sit on our lap and watch it for the 30 minute treatment. Such a HUGE relief. But, we haven’t quite conquered the nebs (hypertonic saline) while he’s awake. I think it makes him feel too claustrophobic. That will be next on our list! The other miracle that I truly am grateful for is that they aren’t crabby or sick – they’re just not sleeping. When they’re awake they are FULL of energy…running, laughing, playing, screaming!!! I just wish I had the energy to keep up with them. I am so blessed to have PJ, mom, Bob, Nina and Granddad, etc. It truly takes a village!

I have to admit I woke up Monday on the verge of a panic attack. It was sitting in my chest – right there in my throat – just threatening to burst out. The dialogue of disaster just kept playing in my head trying to convince me that something horrible was about to go down. I’d had night sweats and nightmares all night. I was on the brink of that very familiar spiral down…all consuming anxiety which leads to debilitating depression. The fight was on – keep myself out of that place. This became my mission and priority for the day. Sad and embarrassing - but true. Over the past week I have realized that my drive or need to write this blog wasn’t what I was worried it was – it is actually quite the opposite. It is not so I can try and convince the world and myself how successful I am and amazing my life is. It is to show my Shadow and my Light. To expose myself for who I truly am and still be able to accept and love myself at the end of the day. For those of you who happen upon this and judge me - I accept that. But I do dare you to take a closer look and see what it is about me that you actually dislike about yourself???? (I’m reading The Shadow Effect – can you tell?)

Okay so back to what’s REALLY important! Cole’s visit to Iowa City (University of Iowa Hospital Pediatric Cystic Fibrosis Clinic) went great. Chaz said he didn’t want to go and would rather stay and play at Oma and Papa’s so it was just Pj, Cole and myself. Cole has slowed down a little on the growth/height chart…but he’s still in the 90th percentile which for a CFer is absolutely amazing. He weighs 28 lbs and is 15 months old. He’s a BIG boy. This is the longest we’ve ever gone between appointments so I was a bit nervous about how he’d do. Now that he is over a year old we only go every 3 months instead of every month. He did great though. He cried a little when we had to do the throat culture but that was it! The numbing cream on the arm worked so well that he just sat on Daddy’s lap for the blood draw. (She had Toy Story 2 on to distract him.) He drew on the chalk board in our room and flirted with the nurses a bit. My sweet baby is truly amazing! We won’t get the sputum culture back until maybe Friday so we really don’t know anything else right now. That is really the big determining factor on how he’s doing and what we have to do. If he cultures a bacteria he will need to go on antibiotics. We just pray he doesn’t and especially pray he doesn’t culture one of the really bad ones…pseudomonas or MRSA. He’s cultured each of those once before about a year ago. First was pseudomonas I think…then within a couple months was MRSA. The good news is that he hasn’t cultured either since then. They both can be very hard to get rid of. So we just cross our fingers and pray!!!!!!!!!!!!! (Also pray that it isn’t just hiding down in the lungs and we’re not seeing it but I don’t believe it is because he’s had a bronchoscopy and CT scan since that showed no bacteria or inflammation.)

The eye opener at the visit for me was the Doctor’s surprise in how well Cole is doing. I didn’t fully realize the complications that his tracheomalacia can bring into play with the CF or how little of a chance there is that it will fix itself with time. I could tell the Doctor was very surprised Cole has been so healthy and is not coughing more and having more problems with clearing his mucus. The tracheomalacia tends to trap it down in there and cause more infections and inflammation. So far so good. But we are having a consult with the surgeon at our next visit to learn about the surgical procedure to help correct this and find out if Cole is a good candidate for it. It’s kind of hard to admit to myself I guess that the Doctor thinks this may be necessary in the future…but the truth is he wouldn’t be having us go through this now if he didn’t want us prepared for it….my stomach turned just typing it.
I sat in the back seat of our Camry – squeezed in between the 2 car seats and loved on CoCo the whole way home! He is such a miracle!!!!!

It’s so strange but I feel like sometimes I am in denial about it all but other times it feels like all I think about…I guess I never really let myself believe how bad it could be – but why would I? Would it really make anything any easier if that happens? I swear my anxiety disorder feeds on this like crazy if I allow it to. I’m just still learning how to stop it from doing that. The only real answer is LOVE LOVE LOVE!

I heard an interesting bit of news today. The leading cause of heart attack and stroke has now been determined to be anxiety and constant worrying! This more than your genetics, age, lifestyle, etc. So, I think “Great- now I’m going to worry even more about worrying too much!” Anyone that knows me is probably pretty aware of my anxiety issues. For those of you who don’t – I’ll spill. I guess I’ve always been a bit high strung and serious in a way. I am my own worst enemy and critic. When I was a senior in college I had my first panic attack. I was sitting in French class – a day I will never forget – and everything got all fuzzy, the lights buzzed, the room swirled, my chest pounded. Then the most intense surge of fear overtook my body. I thought I was going insane and raced out of the classroom (I was never able to return to that class again!) That week I was diagnosed with an anxiety disorder. I have come a long way since that horrifying experience. I can usually ward off an attack now unless I am asleep. But, the incessant voice in my head is still usually stammering on about what I should be doing or saying or thinking or being. In order to “fix” myself I have tried countless remedies. Therapy, medication, alcohol, yoga, running, meditation, acupuncture, reiki, massage, an assortment of self help books….you name it. I’m definitely not “fixed” but I am worlds away from where I was and becoming more comfortable with my issues and what I need to do to keep myself grounded and at peace. It’s a hard fight – I’m not going to lie. 

That being said - yesterday was a small victory for just being in the moment and going with the flow!  It was just one of those days when both the boys were off schedule. They both crashed hard late afternoon for a bit. By the time I got home from Bix at 6 (the last one L) it was 8pm and they were both seemingly tired. We started our normal sleep routine but after 30 minutes of the vest, CoCo was still wide awake and rambling on and on about who knows what – he was so happy and smiley just chatting away. Chaz was also just lying in bed awake. He told me “mom, I’m tired of laying down and trying to sleep” This is where the beauty of summer and being married to a school teacher comes into play. Instead of getting stressed and worrying about everyone being tired in the morning and trying to force them to sleep I just let them do their thing. Chaz came down to the living room with the rest of us and Cole danced like crazy for all of us between running and screaming about. They both laughed, ran, cuddled…whatever until about 11:30pm! Then within seconds of the first yawn and putting them down they were both snoring away. Pj and I both laughed when I suggested maybe this meant they would sleep in later tomorrow for him…although Cole did stay in bed until almost 8 which is very late for him. I did stay awake until about 1am to get my downtime in but it was so worth it!