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!