D-day 2 years out

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


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

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

Gone but not forgotten

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

Pay it forward!!

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

BUT- I am still going to ask.

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

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

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

All my love and thanks!

Sometimes I see

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


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


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

Quick vent....

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

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

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