What is hope, exactly?

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

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

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

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

The outsiders

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

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

well...

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

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

D-day 2 years out

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


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

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

Gone but not forgotten

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

Pay it forward!!

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

BUT- I am still going to ask.

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

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

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

All my love and thanks!