Tuesday, April 12, 2011


In the CF community, oftentimes the parents of CFers and adults with CF butt heads. Not always, but it happens.

I thrive on learning new information about Cystic Fibrosis, but I hate getting preached to. I don’t need someone on my back constantly saying, “this is how you need to handle this situation.” It’s hard enough tackling typical parenting issues, but add CF parenting issues on top of it? It can bring on pure drama between the mamas. Combine drama mamas with adults who have lived with this disease their entire life…not so fun sometimes…

Therefore, when I meet (often virtually) an adult with CF who listens, gives advice & yet doesn’t make me feel like it’s their way or the highway…I’m beyond thrilled.

There are several such individuals in my life, who I respect more than they know. They allow me to dive into the CF world of unknowns and only pull me up (often sputtering) when I get in over my head. They allow me to struggle, to learn, and to thrive without shaking their finger at me saying, “I told you I knew better than you,” aka “I told you so.”

None of them thrive on being a “CF celebrity.” Each person has created their own niche in this world, and each has proven to me that yes, CF is demanding and often a pain in the ass but that yes, life is more than Cystic Fibrosis.

These individuals are those that give me hope for Gavin’s future. They are not shy to admit their mistakes. They don’t stand on the top of a mountain shouting their successes (although sometimes I think they should, they well deserve the admiring attention). They are regular people, living (pretty) regular lives and just trying to make a difference in this little place called Earth.

So Josh, Tara, Stacey and Aimee please know that your advice, dedication, empathy, and strength does not go unnoticed. Please know that I look up to you and admire you. Please know I am well aware that without the failures & triumphs each of you has endured, that my little guys future would be bleak. Please know that I plan on each of you living to be 100 so that I never have to go a day without your knowledge…maybe a little selfish but too bad, I need each of you :)

Without people like you my life wouldn’t be where it is today, cautious but extremely optimistic :)

Thank you


  1. Wow, you have no idea how much I needed to hear this today! I'm actually tearing up right now. I am absolutely honored that you feel this way about our friendship. Funny thing, I think other CF adults sometimes look down on me, because I readily admit to my struggles. I am really glad that you find strength in knowing that none of us copes with this disease the same and none of us do it perfectly.
    Lots of love always...

  2. I needed to hear this today. It's been a rough day and you have turned it right around! Thank you so much. I am honored and happy to know that you feel this way about our friendship. I am tearing up, but they are good tears :) I am going to live to be at least 105 so don't you worry about me going anywhere anytime soon friend! Sending lots of love to you and Gav Man, today and always!

  3. Jen you are amazing... like Aimee, I sit here with tears. This world is amazing... and its funny how its perhaps CF that pulls us toward each other, but other things keep us bound... I think of you for instance with parenting... I have a non CF 5 year old who is amazing and wonderful and who, like many CF kids doesn't love eating, so I try YOUR tricks... and I learn every time I read your blog and those of others... how to be a better person because I think at the end of the day we're all here making the best of what we have, CF or no CF we are blessed to be in the world and fortunate to have found like souls.. I know that I am thrilled to have met you and look so forward to getting to know you and the family even more... and for Mr Mogren..what would this world be like without Mr Joshie?

  4. I think you must have me confused with some other puppet-toting CF nerd. :-)

    I think I can safely speak for everyone mentioned here when I say we are humbled by this honor. If our actions and our words give you hope and provide Gavin with an example of doing the best we can with what we are given, then that makes us all happy. I'm proud to be your friend, Groettum Family. That goes for Aims, Stacey, and Tara too! All of you are wonderful and hold a very special place in Joshland. :-)

    To Tara ~ The world would be a little less nerdy...for better or worse. :-)

    Peaceful things, lots of love, and HUGE hugs!

  5. You are all AWSOME and you ALL make the world a better place. Jen I agree with you 100% and what are you talking about anyway you're like the world's best momma! Ha found a suprise for Gav man and Momma too that was supposed to be in the mail a while ago. So let lil man check the mail it's on the way. I love you for you my 1st CF Momma friend!

  6. You've got some great friends there!