Friends and Family

What to do when you are woken up and you can’t get back to sleep….you get up and blog about what is on your mind.  Friends and family have been on my heart and mind for a while.  The sicker that I get the more I think about them and what they may be feeling.  Family is “stuck” with me but that doesn’t mean they have to deal or even claim my CF. They can love me from afar and still be my family even if they don’t want to acknowledge  my CF or even remember.  It is easy to ‘forget’ that I have anything since we are states away from one another and we don’t see each other daily or even weekly or monthly, sometimes going longer without talking to each other as well. Continue reading

Team Shannonigans shirts and hoodies

I designed a new Shannonigans shirt.  I am in love with the design as well as the shirt color and hoodie style.  I put in my first order of them last week and mailed them out today.  I will be putting another order in in February to give people time to plan ahead and get past all the holidays.  If you are interested in ordering a shirt and/or hoodie for the next sale, please email me at

The color is heather gray.  The hoodie is very lightweight.

The hoodie is very lightweight and has the same design as the t-shirt, front and back.

shannonigans shirts

The color is heather gray. They are Hanes brand.

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1 year ago today

One year ago today the earth lost a wise woman.  Death is a part of life but it doesn’t mean it is easy to endure.  My grandma was an amazing lady.  I miss her every day.  I miss our late night talks.  I miss staying up late when staying at her house and watching all the trash TV together on DVR.  I know my husband misses those late night talks as well.  I know my bonus kids miss her cooking.

It doesn’t seem possible that a whole year has passed.  We all made it through this last year when we didn’t know how we would without her.  There were many times that something would happen that would make me think of her, more than usual that is.  Her email got hacked and sends out spam with subject lines like “Hi ya” or “How’s it going”.  We can’t get into her email to fix it.  Therefore grandma “sends emails from Heaven” every once in awhile just to make sure we don’t forget about her, like that would ever be possible.  When I get one it puts a smile on my face thinking that she would find it pretty dang funny that “she is sending emails even after she died.”  Anything to keep us guessing and smiling.

When I call my grandparents house my grandma’s voice is still on the answering machine.  I called the house a little time after she passed away and my grandpa wasn’t there so the answering machine came on.  My heart jumped out of my chest when I heard her voice.  I was not expecting that.  It’s not like I haven’t heard the outgoing message a hundred time before but to hear her voice when I wasn’t expecting it was weird.  I have called a few times when I knew my grandpa wasn’t home just so I could hear her voice as have others.  Grandpa says he gets lots of hang ups on the answering machine and he assumes that is because someone is calling to hear her voice.  Whenever I finally get ahold of him, he is one busy man, he’ll say, “so you got to talk to your grandma since I wasn’t home.”  Yep I sure did grandpa.  hahaha

Oh grandma, what I wouldn’t give to see you, hug you and talk to you again.  One day I will see you again but until then I will stay here kicking butt and taking names like you excepted me to.  I may get weary but don’t you worry I will not give up!  I love you so much and miss you like crazy!

Until next time….

Chapter 11 – Journal Exerts

“Playing the Cards Life has Dealt”

This journal is from my caringbridge site ( that I started to help keep everyone up to date about how I was doing.  It helped because it was one place that everyone could go and even sign up to receive emails when I posted a new entry.  I then wouldn’t have to repeat myself a million times.  My first entry was on July 26th, 2006.  I am very thankful for the caringbridge site; it has helped family and friends stay current on how I am, even family that I don’t get to see because they are states away.

As I post on my caringbridge page I always wonder if anyone is really reading it.  Then I get emails or messages in the guest book from people whom I have never met but they are reading it because they found my page through someone else.  Just to know that I am helping and encouraging someone by sharing my journey helps me keep going. Without further ado, here is my journey…..This is only a small snippet.

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Chapter 9 – Memories & Stories

“Playing the Cards Life has Dealt”

I was the poster child for the Cystic Fibrosis Foundation for 1985.  While poster child for the CFF (Cystic Fibrosis Foundation), I met Frank Deford (father of Alex Deford whom a movie was made about her life with CF), local celebrities and professional athletes.  I was interviewed by the local paper a few times, attended CFF fundraisers and much more.  There is a CF Fundraiser Ball every year and when I while poster child I was able to attend.  There I met many famous people and got a lot of attention.  It was a way to let people see what CF looks like in real life and not just the foundation that people were giving to.  The poster child/children showed the faces of CF and educated and spread awareness about CF.

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