Tag: family

Finding my Direction

I’ve been laying low – we’ve been laying low. We trudged on with school, and now are into the heat and boredom of summer with no major plans. Campbell has been fighting through some injuries, so hockey has taken a back burner to recovery. It’s hard watching your “typical child” miss out on what she’s defined as normal life. At the same time, watching your child with a rare disease miss out on normal life is routine – how terrible is that? So now I complain about watching my typical child do the same thing. Honestly, WTH. It’s a first world problem. They are thriving, I’m gonna be thankful.

I haven’t put my Rare Disease Mom hat on for a while, but I’m digging it out of the closet and looking at myself in the mirror as I place it on my head again.

Cooper asked to do “Cooper’s Troopers” again this summer. We haven’t done it since 2019. It’s a little backyard shindig where we celebrate with folks who lift us up during our rare disease journey. At the same time, we share the organizations who have made a difference in our lives, and we fundraise for them. But Cooper’s Troopers isn’t about the money. It’s about the community.

Our life has changed drastically in the seven years since we’ve hosted this:

  • Cooper has had four surgeries since then – three of them absolutely brutal (bringing him to a total of nine surgeries)
  • Campbell is now a AAA ice hockey player (as opposed to dabbling in soccer and not even knowing how to ice skate)
  • We now have two teenage high schoolers (as opposed to two elementary school kids)
  • We lost one canine, and added two (achieving life goals, one dog at a time)

If you’re new to the Tippetts since COVID and would like a Cliff’s Notes version of our rare disease journey, check out the 2025 MPS Masterclass presentation Cooper and I did for the Muenzer MPS Center at UNC at Chapel Hill. It took me DAYS to compile the presentation. I couldn’t remember all the details, so I reviewed our entire Caring Bridge page (hundreds of journal entries). Reliving diagnosis and everything we’ve been through put me in a bad funk for a while. Living the rare disease life is hard. Looking back, it’s no wonder I jumped head first into hockey mom life.

But here I am putting on an old hat, hiking a trail I’m familiar with. This needs to be done. Both of my kids need to be seen and celebrated for who they are. So we’ll attempt Cooper’s Troopers – both in the backyard and in daily life, all while embracing Campbell and where she is in her own journey.

deja vu

Today as we were driving to Children’s Hospital Colorado for Cooper’s appointment, I had a moment on the highway. I was just here. A week ago. Driving with Cooper in the backseat. Last week we did this trek for a Patient Ambassador opportunity. Cooper was the orthopedic patient chosen to share his story (OK, I was the one who shared his story), and he pumped up the Orthopedic Department and jump-started their Courage Classic team, Bony Express. In related Courage Classic news, check out my cousin Monica’s Courage Classic page. She’s dedicating her ride to Cooper. She’ll ride MILES through the Rocky Mountains to help kids like Cooper. Throw her some donations and/or well wishes!

Today we are at Children’s Colorado for Cooper’s Neuropsych appointment. This is the fourth time he’s been evaluated by the Neuropsych team. As I explained to Cooper on the way here (right after the deja vu moment), this examination tells us about how his brain works and will help us determine what we can do at school and at home to help him.

But the real deja vu moment is the fact that we used to make this trip to the hospital EVERY WEEK for infusion. For years. Me, Coop, Velocity, and my backpack stuffed with electronics and food. Today, my backpack was stuffed with my computer, and two creative writing books. This afternoon, a prompt in the book What’s Behind the Blue Door by WriteGirl really got me thinking outside the box.

“Our moods can be like weather patterns inside us. Write about what the weather is like inside you right now.” hmmmmm……… My response:

Current Weather:

Calm or Unslettled?

Calm before the storm? Or recovering from the storm while the flood water receeds?

If Aunt Meg’s windchimes in Wakita are an indicator, what are they doing? (Reference from the 1996 Twister movie.) Swaying and tingling in the breeze or the scene after the tornado ripped through her home?

I don’t have a seven day forecast, let alone a 10 day outlook! Is there even an answer when you Google “weather in May for the Tippetts”? Nope. It’s just the little blue circle, spinning, spinning. Previous Mays have seen celebrations, preparing for surgery, traveling for MPS awareness, school mayhem, enjoying hockey and graduations. Mourning. There is no normal weather pattern for May.

But I think my current weather is calm. And the funny part is – my calm may resemble an F5 tornado to some, but I know it looks like a sunny spring day to others.

I loved writing the response by hand in my handwriting. I also enjoyed comparing my life to the weather. I think it’s fitting we live in Colorado, and the weather here can be CRAZY. So are my moods.

So anyway……… Being at the hospital again inspires me to take action. MPS Awareness Day (May 15) inspires me to take action. After Cooper’s two-year term as a patient ambassador for Children’s Hospital Colorado, I realized there is more work to be done. Cooper is built differently, and to utilize restroom sinks, he needs a boost.

Just a regular kid, getting a boost to wash his hands

Although I’m really good at balancing on one foot while holding a 40-pound 12-year-old on my other knee, I want to foster his independence. One way to do this is to make restroom sinks more accessible for people with short stature. Stepstools! And we’re starting at Children’s Hospital Colorado. Help us provide stepstools for kids and people with short stature in restrooms at Children’s Colorado. $750 provides a stepstool for one restroom. Our goal is to provide 35 stools. Visit Cooper’s fundraising page to make a difference.

So deja vu hits again. Here I am AGAIN, taking action for MPS Awareness Day, asking for donations, trying to make the world fit my kid, and telling you all about my mood/weather. Reporting live from Littleton, Colorado, Chris Tippett (non-meteorologist) signing off.