Blank Page – Life’s Canvas of Possibility

A blank page -it’s what I am looking at right now as I am trying to sort all the events that have happened over the last few months in an effort to share everything. Nick stated I should have bullet points and see what happens from there. With how much my brain is swirling on where to start, I’m going to try that approach and see what happens. Here is the list of a few upcoming posts/updates that have happened.

  • Meeting with Dr Laura, Maddox’s Endocrinologist at Children’s Hospital
  • Maddox’s most recent CF Appointment
  • Maddox’s scholarship he recieved
  • Recap/Future of CF Awareness Events
  • CF Advocacy – update on the team
  • Summer
  • End of Summer Crazy Schedule
  • Start of the school year
  • 1 year on Trikafta

Why I write these posts?

It’s solely for me and my way to cope & to share my feelings through the chaos. The happy bonus is that you get to read them, if you want to. It’s an opportunity for me to sort and refresh everything going on. It also gives me a chance to review a thought process, remember to follow up with someone and take a minute to reflect on how far things have come along. Maddox just turned 7 and it was shortly after he was born, we got the call that he has CF (I couldn’t even say it right) and fast forward to right now, there is a blog to document the journey. Who knew!

I’m a full time working mom of a very energetic 7 year old that happens to have CF. It’s doesn’t define who we are as a family. It’s not something we hide. When someone asks about the window cling I have on my door at work, I apologize ahead of a time and mention, you asked – here’s our story. When I have the Team Maddox shirt on and someone asks, I share the story. How else do we spread the awareness? We need to continue to talk about it while in the same breath trying to make tacos, doing my share of the household chores, read Dr Seuss books, watch baseball games and relax for myself.

So many individuals have said to me, “I don’t know how you do it”. The truth is, I don’t either. I just figure it out. I don’t sit still very well (shocker!) for those that know me well. I get an idea and I run with it. I want to be in the ‘know’ that when something new happens and if it can positively affect Maddox, I am all over it to support him. Thankfully, he’s been an awesome trooper with me (Nick too) that I drag them along for this events or to meet these individuals when I’m sure they would rather be doing anything else but they never show it.

Cheers to the next couple of blog posts as I sort through all my feelings/thoughts on everything that has happened!

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