Just The Facts Ma’am

The shitty thing about fundraising is that I have to talk about Cystic Fibrosis a lot and as a result it does not allow me to live in this little fairytale land where Rowan just takes meds and accepts chocolate for the courtesy of letting me give her chest physiotherapy… that wouldn’t be too bad.  But these days nearly everyday I am answering a lot of questions and exercising a lot of demons…  the biggest one for me right now is being made to feel like I have or I am overreacting about Rowan’s CF.

Before I even just talk about my own personal emotional issues with Rowan’s diagnosis – I’ll give you some facts available at the Cystic Fibrosis Canada web site:

  • One person dies from cystic fibrosis in Canada each week
  • Of the 63 patients that died in 2009, half were under 28 years old
  • CF patients spent over 20,000 days in-hospital and attended nearly 14,000 clinic visits in 2009
  • Nearly half of all patients with CF are infected with harmful bacteria such as Staphylococcus aureus and/or Pseudomonas aeruginosa in their lungs
  • 13% of all individuals with CF have CF-related diabetes (CFRD), and more than one quarter of CF individuals, 35 years of age and older, have CF-related diabetes

Now, read those statistics again and imagine they pertain to your kid and the disease that they have…. would you overreact?  The other day when I talked about some of these facts with someone they actually said “Yeah, but Rowan’s CF is on the mild spectrum so what you are worried about happening is actually your own fear and not a fact”….. ouch.  Fear/Fact… when it comes to being a Mom does it really matter?  Fear/Fact harmful bacteria is EVERYWHERE…. what would you do?  I can only assume that what motivated that comment was this persons own fear?  I don’t know, all I know is that a comment like that a year ago would have levelled me – because, quite frankly, I have spent far too much of my life worrying about what other people think.

Here’s what I think now:  My reaction and anyone else’s reaction to any situation is their business and is so personal and unless your opinion is requested – maybe keep it to yourself.  For me now, rather than being levelled by an insensitive comment like that I take it as an opportunity to educate… my fear is real, my fears are legitimate but yes, Rowan is very healthy for a kid with CF.  So, what will I do with that?  I’m gonna work hard for all of the mommies out there whose kids aren’t as healthy… who are in and out of hospital… who are at home doing hours and hours of treatment… who simply do not have time to fundraise and plan events and educate people about how very, very close we are to seeing a cure!  I have said it before, that in my darkest, bleakest days of coming to terms with Rowan having CF and searching for the reason… this is what I found… this is what me and my little family are here to do and the support and the love and the prayers that I feel only make me more sure we are on the right path.

4 thoughts on “Just The Facts Ma’am

  1. I totally agree…. Rilley is also on the “healthy” side of CF. People just don’t understand the day to day worries we have to consider. Keep strong.
    Tara and Rilley 🙂

    • Thanks Tara! Even though we will probably never meet in person I feel like we have such a strong connection given the circumstances under which we `met`, I will be forever that you came into my life when you did!

  2. Right now my eyes are blurry with tears…and …. again all I can say God had a vision..he knew with you as her Mom, Rowan won’t have to worry about being as healthy as she is and you will do everything in your power to make sure there is a cure for CF. Love you honey!

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