Tag: parenting

Out of Body Experience

You know when you are usually the driver and then one day, someone else drives and you get to ride shotgun and watch out the window and see the world from a whole new perspective? That’s where I’m at right now. Riding shotgun, looking at the same landscape through a foreign filter. 

I’m at Children’s Hospital Colorado, sitting in the sports medicine clinic, watching Campbell march through her physical therapy program. Jumping up, over, left, right – one leg and then both legs. All the people here know me as Campbell’s mom. Yet 100 feet to the east, I’m Cooper’s mom. Coop and I have been overnight guests down the hall for sleep studies. 200 feet to the south, I’m again Cooper’s mom. We are here twice a year visiting audiology to adjust his hearing aides. Down one level I’m an infusion mom. Cooper and I checked in at the Center for Cancer and Blood Disorders one day every week for six years. On the first floor, I am the breakfast burrito order in the kitchen and again Cooper’s mom in Radiology. I’ve watched storms roll in from this fabulous viewpoint and taken timelapse videos similar to what you see during the weather update on the local news.  I have a favorite spot in this parking lot, but I am not parked there today, because the handicap permit stays in the car door pocket when I’m here with Campbell. 

I’m beyond grateful for being BOTH moms. It struck me as crazy this morning when I looked around and thought, THIS is what the sports medicine folks know about me – they know Campbell, and her hockey. They don’t know the volumes of medical records, infusions, surgeries and recoveries my other mom role has seen. They don’t know Cooper, his dog Velocity and our rare disease journey. I’m OK with that. The rare disease journey often defines me (and us as a family), so as I looked in on my life from what seemed to be somewhere else, it was hard to believe it was MY life. Sometimes it’s good to be someone else for a while. But just a short while, because this evening it’s back to parenting both kids as it’s High School Freshman orientation night for Cooper!

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.