Aiden's Journey

One Little Boy's Battle with Dravet Syndrome


Polyanna, Bierstadt, and Truth

Posted by Nicole on July 26, 2011 at 11:23 PM

What would you like this week? Upbeat “We can move mountains,” Polyanna style? Or stripped to the bones bare, raw emotion? I can do either.

We can move mountains. Or at the very least, we can climb them. We climbed Mt. Bierstadt, one of Colorado’s “easiest” 14ers. (A 14er is a mountain rising over 14,000 ft). I say “easiest” because that’s what all of the hiking sites and personal reviews said. “My 6 year old handled it with no problem.” “This was my X year old’s first 14er.” “Bierstadt is the easiest when it comes to Colorado’s 14ers.” Pshaw. Whatever. I have only two things to say on that front:

1. Those people are lying. They may have SEEN a 6 year old climb it, but it certainly was not their own 6 year old. Had it been theirs, they would have not added the “with no problem” portion. “With minimal whining,” “With only a few blisters,” or “Amazingly!” would have been more appropriate.

2. Those people have never worried about being 2.5-3 hours from a car, which could then drive out of the dead spot known as Colorado backcountry, only to contact paramedics 3.5 hours after an emergency started.

3. I couldn’t stop at 2. Those people have never carried a 5 ½ year old on their back.

I feel great about what we accomplished despite not making it to the summit. Only once on the way back down when two obviously experienced hikers’ jaws dropped as they said, “Did you summit like that?” was I tempted to smile and say, “Yep!” Mostly I laughed and told them my family was heading to the top but I had reached my limit. And mostly I was glad about turning back, especially the last 15 minutes of my 2.5 hour total hike.

Owen and Alec, it turns out, only went another ½ mile or so past me before they turned around, exhausted and feeling amazingly proud of getting to the base of the summit. Again, to those people: Whatever. My 7 and 9 year old are in good shape and should be proud of how far they came. And they got to touch snow on July 23rd.

So there’s the “We can move mountains” portion. I’m not sure Aiden appreciates the whole 14er hiking thing – he’s happy and agreeable, but I felt his belly sweat on my back and I know that can’t be comfortable for that long….

Here’s the raw, bare, selfish emotion part: I hate that his seizures rob him of so much in life. I hate that they come in the night, scaring him far worse than any of the imagined ghosts we all feared as children. My heart aches when he jerks and twitches next to me in bed, eyes wide open, pointing to something he sees in the air above his face, clearly panicked but not even having the body control to scream out, or run, or say “I’m scared.” I hate most the words that escape my mouth during those times. Words of comfort, but to whom? “Don’t swallow these meds – let them sit in your cheek so they can help it stop.” But it doesn’t stop. “Hang on, honey, try to go back to sleep – that’ll make it stop.” But it doesn’t stop. It doesn’t stop. It doesn’t stop.

I am frustrated by our constant struggle to tweak his diet, adjust his meds, walk on eggshells to avoid seizures that come like freight trains no matter what we do. I don’t know what to do. The doctors can’t help, I can’t help, and I see what his little body goes through multiple times each week and can’t help but wonder how much it can take. Sometimes I see pictures of him (on the mountain, for example) and think of how they look like pictures we’d remember him by if he were gone.

I don’t understand how he can keep fighting, how he can not be so scarred by what’s happening to him that he just shuts down. I am haunted by the mom who lost her child after a short, 3 minute seizure in her arms. I would understand if his body finally gave up – I wouldn’t blame him at all. And that’s the ugly truth right now.

I know this isn’t healthy, that I shouldn’t dwell on this stuff, and I usually don’t. But sometimes it stares you in the face and makes it all but impossible to engage in normal conversation. I could chuck Facebook right out the window about now, if only I didn’t use it to connect with other Dravet parents in our frantic search for something to help our children.

A little good, a little bad, another roller coaster week.

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Reply Tracy Sarel
1:04 AM on July 30, 2011 
Nicole, It breaks my heart that your family has to endure this, but I have continued faith in the blessings God has in store for you. If the average life is the equivalent of scaling a 14 footer, you have scaled Mt. Everest (29 footer) a 1000 times and back in the worst conditions ever imagined with a smile on your face and a 5.5 yr old on your back, with the rest of the family with you every step of the way! May God bless you. Sometimes joy is not spontaneous, it is a decision....thanks for deciding to find the joy in everything you do. Much love, Tracy
Reply Niki
10:54 PM on July 31, 2011 
So we can't all be Pollyanna!
However, you CAN climb mountains...literally and figuratively. I'm so proud of you for being brave and inspiring the rest of us to get out of our houses. I hope things get better soon.