Understanding the Moments

The bad news is time flies. The good news is you’re the pilot – Michael Altshuler

Here we are, the first week of May in 2022. This is just crazy of how time is flying by.

One of my goals for 2022 was to find myself and through this exercise so far, my passion for being Maddox’s biggest advocate has really become my main focus. I’m not really sure why it’s this year. It’s just been a calling in my soul. What else can I do for him? Who else can I tell his story too? Who will listen to his story? How can I share parts of my son’s journey to make others aware? What else can I do to ensure that he will have a healthy, successful and fun childhood?

WI Herd – Maddox’s first basketball game

Will there be a cure during his life time? His response when asked- “we’re gonna find one”. When his little voice said it in the interview with Mr Van Ekeren, my heart melted. It melted in many different ways, my little peanut is growing up so fast. He knows that it’s a work in progress. He knows that the medication he is taking is helping him. He knows how important all his treatments are. He knows he has doctor appointments and has to have blood draws. He knows it’s a lot of work. He knows when he wakes up every morning he needs to put his vest on. He just knows. To have your 6 year old son understand and tell you this – puts a lot of things into a different perspective. Life is just too damn short.

And so with that being said, one of the other things I have been working on for myself is to bring back the fun in my life(Party like I’m 22 again) and not let the stresses of the day take over. It’s having Santa buy Daddy a Dad joke daily calendar and as a family, we read it every morning to each other (Not gonna lie – some of the jokes are terrible and I think we laugh at that part). It’s understanding everyone’s love language and playing to those strengths. It’s just smiling more. It’s watching the funny movies. It’s singing karaoke off key. It’s being spontaneous and going for a hike at a park. It’s just having fun and not feeling dumb about it.

It’s so easy to get wrapped up in the daily routine of; get up, brush your teeth, get dressed, rush out the door, work, come home, figure out what to eat, manage the night time treatment routine and before you know it – it’s dark and we’re all going to bed. It’s a work in progress for me for sure. How easy is it to sit on your phone and get lost in the scrolls. It’s an addiction for sure. So I am working on trying to bring back the fun. Easier said than done.

The days can be long; doctor’s call, appointments to be scheduled, refilling medications, filling out paperwork for school, wrap around care, summer camps and everything inbetween. If you let it, it can be exhausting. But I try to have the fun in it. When I’m chatting, I am pushing myself to engage and have a fun conversation rather than dreading it. And it’s been working. It doesn’t seem like a chore (as much).

Then I bring on more fun or find something new (which others look at me like I’m a medusa). As soon as I say – o hey guess what, I usually hear:

*How do you find time in your day to do everything/anything?

*You’d be so bored if you didn’t have the craziness of your day!

*You need to cut something out of your life – you’re going to get burnt out.

I’m ok with the chaos as long as its self inflicted. I don’t mind scheduling the CF Awareness night at the Timber Rattlers (local baseball team). A few emails, a date and time and we’re in. Now my struggle is to figure out what I should do for handouts for Ladies’ Night. But for me, that’s my fun. I’m always trying to think of the next coolest thing to share the awareness (the answer is beads, leis, glow sticks and pinwheels for the kids again).

The Facebook page and this blog – it’s my outlet. It’s my fun/happy place. What is going on in our lives that is relative to the CF journey that I can share? Will it benefit anyone to hear about it? How can I share our story that people can sorta relate to? And then the pictures and stories of him fly to my finger tips. It’s so easy to share these experiences.

So I will catch you up on the latest and greatest. Team Maddox was able to participate in the Great Strides walk this year – first time in forever. As a team, it was our highest fundraising year and we aren’t done yet. The Green Bay walk was able to hit our goal of $66k.

Maddox’s Karate family has been amazing. Through the month of May… well., actually I’ll have Maddox and Mr. Van Ekeren explain it here. Seriously, how cool is this! I am so grateful, overwhelmed, happy, excited, and proud by the out pouring support of a team/community. All for my little 6 year old. These momma’s eyes well up with tears (good tears) every time I think or hear of it.

Next week, we have his next quarterly CF appointment, which means another blood draw, pokes and prods. Tammy will be telling us he’s not gaining enough weight and the PT excited for all the sports he’s involved in. We’ll see if there is anything new and exciting after next week’s appointment. Until then – this is mom signing off as I need to reply back to the Gamblers to see if we can have a table for information at a game next season. I also need to email our Congressman to see if we can arrange a meet and greet for Maddox. Oh, I also had another order of shirts that I’ll be screen printing in the basement. LOL – Never a dull moment and I’m ok with that.

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