Tag: writing

I hate today

Today is MPS Awareness Day. The day annually reminds me of how my son is defined. How I’m defined. How my family is defined. We have the boy with the rare disease. Lots of medical appointments. Surgeries. A four-hour infusion once a week. My son looks different.

When Cooper was first diagnosed 10 years ago, I embraced MPS Awareness Day. I advocated! Did interviews! Organized activities at the school! I asked everyone to wear purple and created photo collages of all our support.

MPS Awareness Day Collage, friends wearing purple for Cooper – 2015

Ten years into this journey, and I want to hide. I don’t want to talk about what makes Cooper different. I want everyone to see the stuff that’s INSIDE my kid that is like everyone else. He loves sports and Fortnite. Farting is hilarious. School is hard. He’s funny. He’s sweet. He loves his new bike – it’s just smaller than all his friends’ bikes.

I am so freakin’ tired. But this is my journey. We decided to stick our necks out and show what our life is like. I don’t regret it. It’s just harder some days.

So this is my challenge. Let’s redefine it. Redefine US. Let’s not talk about MPS and the shit sandwich it has handed to us. Let’s talk about moving the needle. Let’s make things better for Cooper and others like him.

Please share my ask – I ask for funding to install stepstools in the bathrooms at Children’s Hospital Colorado. Why are there no stepstools in restrooms at a children’s hospital? As Nate Bargatze (as George Washington) says, “Nobody knows.”

Let’s fix it. Let’s fix it for the little kids – and the big kids with short stature, like Cooper. Let’s make THIS Cooper’s legacy – giving, caring for others, making change. Here is the link to make that change:

Stepstools for CHCO

If you are new to this rare disease journey and just found my post, please don’t let my rant disturb you. It’s gonna be hard. This is what’s hard for me, 10 years in.

—— Author takes 1.5 hour nap, has a glass of water and an apple, returns to writing ——

I’m feeling refreshed, but still emotional. My heart feels tight, and my soul is sad. So everything I said up top? It’s legit, I still don’t like today. “Hate” is a strong word, but that’s how I feel. Now it’s time to do what I can.

Am I wearing purple today? Yes. It was the outfit of the day as I attended Mass with my parents and aunts. Father’s intention for Mass was Cooper. Aunt Mary Ann, my mom, my dad, and I all wore our Cooper’s Troopers T-shirts. I cried on the way to mass. I knew the significance of the day and was dreading it. Events like this are like picking at a scab; it brings a flood of memories from the hardest time of my life – diagnosis.

And did I advocate today? Yes, to a classroom of kindergarteners whose innocence, sense of wonder, and excitement renewed my spirit. One of their favorite books is Super Cooper Wins the Stanley Cup, and they know that Cooper is Mrs. Kruse’s nephew. I had the opportunity to answer questions about Cooper, mainly about Cooper’s height, and the fact that the Colorado Avalanche are no longer in the playoffs. (Both disappointing.) I promised I’d bring Cooper back to meet them in a couple weeks. They are reading other books about how everyone is different and being different is OK. I couldn’t love the message more.

Let’s wrap up this rant. Fundraise for stepstools. Accept people who are different. The end.

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.