Aiden's Journey

One Little Boy's Battle with Dravet Syndrome


Up Down, Up Down

Posted by Nicole on July 12, 2011 at 12:21 PM

A few vignettes from our month-long stay back in Minnesota will give you more insight into how I feel than the usual overview, so hold on tight: It’s a roller coaster.

Day 1: The miles have flown by, all 911 of them. (Ironic, huh? 911 is a familiar number to us...) We sail into Grandma’s house on the last fumes of our third tank of gas, not quite 14 hours after we left this morning. With every state line I felt myself moving farther from my husband back home, but closer to my mom, sister, and the family members we’ve missed for so long. Mom, Dad, Mother in Law, Father in Law, Sister in Law, and niece are all there to welcome us “home,” and a fabulous evening makes me miss my husband just a little bit less.

Day 4: I went out with some girls, mostly wives of Andy’s best friends. We had a nice dinner and conversation, and though I kept my phone on my lap at all times no emergency call came through. Turns out Mom, my little brother, and his girlfriend fielded their first full blown seizure all by themselves and Little Bro forbade Mom from calling me. Despite my dutiful doubts as his big sister, he has shown some serious “stuff” lately and I am respecting him more and more as time goes by.

Day 5: I sit in at the table chatting with Mom, Sister, and Maria, our childhood best friend. We suddenly hear engines rumbling and notice my oldest children are missing, along with that little brother of mine I bragged about so just a minute ago. “Oh, that’d be the 4 wheelers Andy fixed up for his nephews.” Smiling, we all head out to the deck expecting to see Andy taking his finally-good-for-something nephews on rides around the backyard. Instead, we see the back of a bony 45 lb little thing with a helmet so big I swear it covers his entire ribcage, speeding away from us. By himself. That’d be my 7 year old, who watched Uncle Andy shift enough to figure out how to get out of the babyish 1st gear we had limited him to. He now knows all 5 gears.

Day 12: We are up at Duck Lake, our grandparents’ (and now Aunt and Uncle’s) lake in Wisconsin, in the pouring rain. I awake at midnight next to Aiden jerking and scared in a complex partial seizure. His eyes dart around and lock with mine for a nanosecond and I hug my poor terrified boy and say, “I’ll get your meds, Sweetheart, just hang on.” The seizure generalizes in an instant, his arms still wrapped around my neck, and I feel myself being strongly choked. His hands have balled up into a fist and are pulling my hair in the most excruciating tangle as my eyes get wide. I try to yell for help, but only a faint, “Owen, Help me!” escapes, and my 9 year old is awakened from his slumber. He doesn’t know what to do or why I need help at first, but heads toward the meds as visions of him drawing up the syringes and inserting them in Aiden’s crevices are seared in my mind. No child should have to rescue their mother from being choked by their little brother. (Note to others here: Don’t hug your strong seizure-prone children with arms around the neck while they’re in ANY kind of seizure.) The next 2 seizures that night are mundane.

Day 18: Aiden is playing in the wading pool at my sister’s house just like all of the other children! He’s been playing for more than two hours and he is going strong. I am so happy we’re able to be outside with everyone else, as a few summers ago this would have been impossible. Life is amazingly good.

Day 19: We’re playing in the wading pool more on this 97 degree day. The kids are having a blast and though I keep my eyes on that little chubby bottom with the plumber’s crack ever present at the top, I take a minute to re-tie my bikini top. I have untied it and am about to start the new bow at my neck when I see Aiden fall (not out of the ordinary). He doesn’t come up out of the pool. My arms are on him in a heartbeat, but he is so heavy and so slippery that it takes me what feels like an eternity to fish him out of the 18-inch deep water. This is one of my worst nightmares: He has had plenty of seizures in the water before, but they’ve always been in my arms or in his lifejacket, both of which prevent the inevitable gulp of water as he goes down in the first tonic phase of a seizure. That is what’s hardest to explain to others who say they will watch him in the water while I take a break or go to get something from the house: It happens so quickly, and the first back stiffening/ wide-open-mouthed moan at the start scares me the most around water. I fish him out and lay him on the ground, Lexie on him instantly, trying to lick his face dry. I swipe his magnet to activate his VNS and silently pray that he’s not going to drown, that the ambulance won’t need to resuscitate him because I had the nerve to retie my top. (I am 100% naked on the top at this point, by the way, and I don’t much care. My niece, nephew, and all of the neighbors are likely scarred by this scene but I am not exactly aware of them enough to notice.) The seizure stops and he lies there, grey and lifeless, for about 5-7 seconds before he takes his large gulp of air, the sound of which is music to my ears. That last phase of a seizure always gets me, but never more so than when I’m fearing he’s drowned. Day 19 brought me this peace of mind: 3 years ago I would have called an ambulance and spent the day at the hospital making sure he didn’t have fluid in his lungs and getting pneumonia-prevention shots. Today we continued on, monitoring his oxygen and heartrate, and we made it through one of our worst fears.

Day 21: Knowing that his seizure for the week happened yesterday, Andy says, “You bet you are,” when Aiden announces he’s going waterskiing. The boy loves to do what everyone else does, and there’s no safer time than a day post seizure for him to try. We slide his feet into the skis, I climb into the boat, Andy in the water holding Aiden, and we get ready. I figure he’ll try but not get up like he did last year and we’ll have made the little guy happy. Imagine the shock, excitement, and sudden terror on my face when he not only pops up but continues skiing across the lake. There is my baby, 30 feet away from me, in the middle of the lake, 30 feet away from Andy standing in the water whose congratulations are getting farther and farther away. He is so pleased with himself that his smile makes my heart swell, overpowering the “what if” thoughts swimming in my mind. His strength fades quickly and his bottom sinks lower and lower toward his skis until I finally let go of the rope, dropping him in the middle of nowhere, his head the tiniest speck (but upright speck!) in the middle of the lake. We circle around to pick him up and he is grinning from ear to ear. “I hay hi-id,” “Ooh gum back,” and “I gee” are uttered over and over as we pull him into the boat. (That’d be “I say, ‘hit it’,” “You came back for me!” and “I skied!”;) He is on a high for the next 30 minutes as the other boys ski and the excitement-induced seizure doesn’t come until we bring the boat in to the dock. Sometimes timing is everything.


Me, still relaxed. Aiden, still close enough to Andy for comfort.


The smile is worth it.

Day 22: The day has been beautiful, Aiden recovered quickly, and we’ve been fishing, skiing, playing, and enjoying each other’s company the entire day. The lake is like glass, we head out for a dinner cruise, and Aiden says he’d like to ski again. I am not so sure but Andy reminds me he needs to live as much as possible. I am not sure of the idea and haven’t said “yes,” but Aiden thinks he’s going skiing. He must be coming down with something because just the thought of skiing this time is enough to bring on the seizure. Crisis averted in my eyes.

Day 30: Random but likely seizure-induced vomit. That’s all I’m saying on that front.

Day 32: The week is sunny and gorgeous, Andy has rejoined me in MN, and life is good. Our musical beds and homelessness is starting to wear on all of us, Aiden’s diet has been tough to control, and I am looking forward to coming home. We couldn’t have asked for a better time at the lakes, with friends, with family, and we are amazed at how blessed, lucky, and fortunate we are to have been able to spend a week having fun. There are seizures here and there, but nothing noteworthy. Most of all, we’re happy to be a family.

Some Random Vacay Photos:


Photobucket Photobucket

New rope swing was a hit!




Just love Andy's face!!!

Categories: April-June 2011

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Reply Barb
1:34 PM on July 12, 2011 
Day 4: is that all we are, "wives of Andy's best friends"? j/k
loved the post! It was so good to see you guys. I'm serious about coming out there soon. We'll keep you posted!
Reply Nicole Villas
2:22 PM on July 12, 2011 
No!!! I was delineating you guys from other girlfriends, but then didn't end up writing about anyone else... I'll change that right away, cuz you're so much more :)
Reply Niki
2:50 PM on July 12, 2011 
This is such a happy post!
It, once again, makes me see that "living" can be possible! Hooray for A! What a time :) and hooray for people that can look past our nakedness and see that we have a hard job ;) I'm so glad that you had fun!
Reply Kay
12:16 AM on July 13, 2011 
You never sease to amaze me. I am always amazied at you strength and how you all work together so well and enjoy every thing in life.
God Bless