Breaking the Surface of Normal

Summer...a great time to start something new.If there’s one thing I’ve learned this year, it’s to not sweat the things I couldn’t accomplish. Like keeping up with this blog. Some things in life are just more important than the things you want to do (like keeping up a blog); they are called the things you have to do.

This year, top of the list was getting our daughter healthy again after a successful trip to the  Mayo Clinic (see earlier posts). I was under the impression that I wrote a denouement to that story in January, but now I realize it was on our Caring Bridge webpage, which is private. Upshot: We got to Mayo, our daughter triumphed through a gauntlet of tests and appointments, pulled the feeding tube the night before our last appointment, and is eating full meals again. Yay! We got a successful diagnosis of Postural Orthostatic Tachycardia Syndrome, which I we had started treating her for months before her diagnosis. But at Mayo they had a better treatment plan for her, and it works. We also found out she has a fructose intolerance, which at first was tricky to navigate, but we’ve got it down now. You can learn a lot of tricks in six months.

Shower the people you love...with amazing little miracle blossoms.

Shower the people you love…with amazing little miracle blossoms.

Words can’t describe how grateful we are to have a happy, healthy kid again. She’ll deal with this stuff for years to come, but now she knows what she needs to stay active and healthy, so life is good. How can we thank God for this? I guess the rest of her life will glorify God. In the meantime, we are working to raise awareness and help kids with POTS. More on that later.

For now, I continue to pray for kids we’ve met who have POTS and other ailments. I have a bracelet for that. And now I can pray while I run. At Red Rocks Community College, where I work, an amazing instructor named Andrew Johnston designed a course where you train for a marathon. Your final exam is running it! I couldn’t take it in the spring, but he’s offering a half-marathon course this summer, so I’m taking it. It is a kick! I have a bunch of reasons for doing this, but Andrew asked us to send us our “Big WHY” so that when it gets tough, we can dig in. Here’s my response:

Dear Andrew,

You asked for the Big WHY, but to be honest, it’s more of a web of reasons. I will try to figure out a main one, but all these are important (in random order).

    • Because the thought of running 13 miles in a row without stopping scares hell outta me and I always learn the most when I keep going even though I’m scared.
    • Time to focus on my health: physical, mental, spiritual. Prayer time to dedicate laps or miles to others.
    • To learn how to run correctly and lightly, without strain or injury. I’ve never gotten hurt but I’ve also never gotten very far. : )
    • Because I have an amazing family who need and deserve me to be strong and healthy.
    • Taking a class always makes me a better teacher. And it’s really nice to be on the receiving end of inspiration.
    • Middle age is nipping at my butt and I don’t like it.
    • Inspiration for my blog and writing.
    • My mother has high blood pressure, endless joint pain, and now congestive heart failure. I inherited her high blood pressure, but I ain’t doing that other crap.
    • Vanity. I’ve always wanted to have sculpted thigh muscles, but no matter how much I run or swim, I just can’t get there. Guess I need to step it up.
    • To work with you and Richard. I’ve never had a coach.
    • I trust you. It’s obvious you have integrity and enjoy inspiring others! Great energy.

Last, in October 2010, our youngest daughter was hit with a mysterious debilitating illness no doc could ID or fix. We tried every test, prescription, diet change, doctor, holistic approach we could uncover. After a while, modern medicine gets bored with your repeat business (even if it is lucrative) and will tell you it’s all in your head. I knew she was undiagnosed with something fixable, so I spent countless hours researching, haunting chat boards, and more. I applied to the Mayo Clinic. It took us 11 months to get in. In the meantime, I learned about a condition I was sure was her problem, so we began treating her for it. She got a little better, but was still on a feeding tube when we got to Mayo last December. The doctors confirmed it was Postural Orthostatic Tachycardia Syndrome (POTS) and designed a recovery/treatment plan that would really work. She’s now back to normal activity and diet. She lives within certain restrictions, but we are stretching those every day. Life is good again.

One of the best treatments for POTS is regular cardio, so we work out together or she (proudly) works independently. Along that grueling journey, she taught me what bravery is. If she can do what she did, I can run a stupid little half marathon.

There, I guess I figured out the center of my Big Web of Why. In fact, the experience will be useful as we develop an online support group for young POTS patients. Yeah. Thanks!


Now that we have surfaced from the undertow of illness, it just feels good to breathe deep and catch our breath. And now venture out into a new journey. On your marks…get set…live!

Look who's coming to dinner.

Look who’s coming to dinner.


This entry was posted in fructose intolerance/malabsorption, POTS (Postural Orthostatic Tachycardia Syndrome), Running and tagged , . Bookmark the permalink.

2 Responses to Breaking the Surface of Normal

  1. shirley russell says:

    Your story is touching and so informitive
    Many prayers also helped your precious daughter including many from me. God bless you Sandy for sharing your knowledge, love and sincerity. Love you, Shirley

    • Thank you, Shirley, for your prayers. You are an inspiration to me. You have walked the darkest valley and came out strong. Now you’re smiling all the time. Bless your heart. <3

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