Aiden's Journey

One Little Boy's Battle with Dravet Syndrome

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Dravet Who?

Posted by Nicole on May 24, 2011 at 11:00 PM

“Dravet who? We’re going to the zoo.”


This was on one of my friend’s Facebook walls the other day and I love it. Partly because it rhymes, partly because I know she and her daughter have been through an awful patch for the past few months and if they can ditch everything and head to the zoo, then I can too.


Time has slipped away from me this week, but did you know that my in-laws flew into town as a surprise birthday/MBA graduation gift for my husband? Hey, wait! Did you know my husband finally finished his MBA? He started the fall Aiden was born and has worked full days, headed to class on weeknights, gotten up early on Saturdays to study, taken midterms, finals, and completed just-shoot-me-now group projects ever since.


I remember calling him while he was at class that Thursday night and saying, “No need to rush home – Finish your class. But I’m in labor, so when you get home we’ll head to the hospital.” The next fall brought the first of many calls, again while he was in class, “This time it’s an emergency – Aiden’s having a seizure and they can’t get it to stop. Meet us at HCMC in the ER. Now.”


With all we’ve had going on in the past 6 years, I am SO proud of him for sticking with it, for not complaining, and for still being there when we needed him. I have no idea how he does it – You’d hear me complaining every night I had class, every exam day, and just about every hour in between.


Back to those in-laws and the zoo. Okay, not the zoo – even better: U2. Two years ago Andy bought me U2 tickets for Christmas. We’ve seen their concerts religiously and were so excited for them to perform in Minneapolis. That is, until they had to postpone the concert for a year and we happened to move to Colorado during that year. We finally, reluctantly, returned our tickets realizing we weren’t going to be able to make it back to Minneapolis for our long-anticipated show.


In-laws! Their surprise trip just happened to coincide with U2’s scheduled concert in Denver and we were able to go at the last minute! Waiting for them to come on stage after the Fray opened, high up in the stands at Invesco Field (formerly Mile High Stadium), looking out over the sun-bathed mountains we looked at each other and connected like only we can. Bliss.


Dravet who? We’re going to U2.

Categories: April-June 2011

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1 Comment

Reply Paige Figi
11:34 PM on May 28, 2011 
Love it! That is huge, Nicole. So happy for you two :-)