The Photograph.

They say a picture is worth a thousand words.  That may be true, but can it also be worth a thousand tears?

The photograph was nothing phenomenal.  No heart wrenching, award-winning shot of someone looking to the sky and weeping after a disaster. It was just a traditional “yearbook” picture of the CHS Concert band in a cardboard frame folder, with an individual shot of Lukah holding the clarinet she has played since 6th grade.  But the second I saw it, the sadness hit; raw and to the core.

I have purchased team and group photos of Lukah for years — Ever since she began playing softball when she was 6.

But when she brought that band picture home, I suddenly realized it was probably her last.

It is unfair.  She should still have two more years of “group photos” — two more years of sports and band and fun.

But instead of enjoying her high school years, she is at home, lying in bed recovering from seizures and suffering from the debilitating symptoms of POTS.

I have hauled Lukah all across Illinois for her sports and organizations for 7 years, and in an instant that band picture made realize I will probably never do it again.

In a weird way I am grieving, and I feel selfish. Thankfully, I am not grieving the TRUE loss of her.  I am instead grieving what once was. I am grieving her life BP (before POTS).

Her life BP was filled with activities: softball since she was 6, basketball and volleyball starting at nine, band and track starting at 11.  She did everything, and she did it well.

She currently holds the school record for pole vault for 7th grade at the Junior High.

Here she is, when she was strong,  flying nearly seven feet in the air:

Things are so different now, than they were even a year ago when she was gearing up for her first high school softball season.  She only made it through a few weeks of practice before The Beast introduced himself.

Here she is in her uniform, the night they were handed out.  Too bad she never got to use it.

And here she is in another uniform she didn’t get to use . . . volleyball . . . her favorite.  She practiced in the summer but The Beast had other plans for her by the time the season started. She never even got a chance to play in a game.

The Beast steals its victims’ youth.  Not just Lukah’s — so many others suffering from POTS have the very same story.  It is so sad.

One of Lukah’s doctors told me that for some reason, POTS is known to affect “overachievers.”  Many kids suffering with POTS were once strong athletes who also excelled academically.  Lukah fits that profile.

I read story after story in my online POTS forums about once high achieving kids who barely end up graduating because they have so many absences from school.

When Lukah was first diagnosed, we were hopeful that she would outgrow her POTS.  The statistic we were given was that 80% of children diagnosed with POTS outgrow it by the time they are in their early twenties.

That statistic quickly changed.

A few months after she was diagnosed, Mayo released new statistics:

20% of children diagnosed with POTS outgrow it
60% of children diagnosed with POTS remain the same
20% of children diagnosed with POTS get worse

The odds are against these POTS kids, and it is heartbreaking.

But I believe in miracles.

I got Lukah the movie “Soul Surfer” for Christmas.  It is about a young surfer by the name of Bethany Hamilton.  Just as she was on the cusp of a professional surfing career, a shark took Bethany’s arm, leaving her with only one.  Bethany overcame many obstacles to achieve her dream of becoming a professional surfer.

I believe Lukah will overcome her obstacles, just as Bethany did.  She will become one of the 20% that recovers, and go on to do great things.

Afterall, as Bethany said, “”I’ve learned that life is a lot like surfing. When you get caught in the impact zone, you need to get right back up because you never know what is over the next wave, and if you have faith, anything is possible. Anything at all . . . “

God Bless.