Aiden's Journey

One Little Boy's Battle with Dravet Syndrome



Posted by Nicole on May 8, 2011 at 9:42 PM Comments comments (4)

I thought I knew the definition of “mother” when I was 21 and newly married. My mom loved me, played Trouble every morning before kindergarten, and taught me the difference between right and wrong. She taught me how to tell the truth (sorry that took so long, Mom!), how to make friends (again, another long lesson), and how to show your respect to others.


When Owen was first born I smothered him in my version of mothering. I wrapped him in snuggly blankets, picked the dandruff out of his baby-soft scalp by hand, and cried every hour the first several months I was away from him during the day at work. (Is this a good time to mention Owen, of all my children, hates smothering the most? Or that he hates being warm, prefers his dad’s shoulder, and does not appreciate your touching his head? Maybe that’s the reason for his “colic” the first 3 months?)


When Alec was born, I mothered him in similar ways, but he appreciated it. He was my little buddy, loving the snuggles and warm blankets, the closeness, the smiles I’d bestow on him. Still, all of this is in the realm of “mothering” I thought I understood at the tender age of 23.


Aiden’s entrance to the world was much the same, except he never voiced his opinions. On anything. He was laid back, cool with whatever I threw at him, and loved everyone equally.


In the past 9 years I’ve learned a lot about mothering. I know that every child is different, and that none of them conforms to what I *thought* I knew about what it means to be a mother. But no one has shown me this as much as my laid-back, easygoing Smoochie Face.


It turns out that mothering involves a hell of a lot more than blankets, snuggles, and kissing boo-boos. It takes complete sacrifices of everything you used to love, but replaces it with surprises you could not have imagined. At one point I would have taken most of what stops me in its tracks with amazingness for granted. Moving away from family, hiking, family walks – all of these would seem typical and mundane in my previous mothering dream, but today? Today I am humbled by the seemingly simple experiences we have that are downright mind boggling for our family.


Yesterday Aiden (who has shown great improvement since starting a gluten free diet 3 weeks ago) apparently swiped some bread from the table at our dinner party. He spiraled downward with two grand mal seizures in two days in a row, the second on a large rock resulting in a huge, fat, bloodied, split open lip and loose tooth. He endured another seizure in his sleep.


Years ago that would have left us housebound for the foreseeable future. Today? Today we did this:





And this:




And this:



 Pike's Peak, from the top of Devil's Head

Our days of carrying him on our backs to see God’s awe-inspiring world in all its glory are numbered. (I think there are about two years left by my back’s calculations.) But until then, one thing I’ve learned about this thing called mothering is that it's my job is to give my kids the most amazing experiences I can humanly give them and let them decide what path they want to take. It’s possible that when Aiden is a teenager he may have no way to get to the top of a mountain. So damnit, I’m going to take him now, while we can.


We met a couple at the top (It might be these people):



Who teased that they’ve only lived in Colorado for 18 months and didn’t need to climb EVERY mountain in the first year. I smiled and commiserated, but pushed back the feeling of inner urgency to do it now, while we can.


So here’s my mothers’ day wisdom: Mothering is not just about love, or kisses, or playing Trouble (grateful though I am for Mom’s commitment to our game each morning). It’s about inspiration, reordering of priorities, and respect for individuals. This is what I hope to pass on to every one of my children, regardless of their mental capacity or social standing. Happy Mothers’ Day to some of the most inspirational Tiger Moms I know!

One, Two, Three...

Posted by Nicole on February 24, 2011 at 10:51 PM Comments comments (2)

“Wuu, Goo, houw, hic, hee.” That’s what I got when I told Aiden we needed to count our blessings today. (Translation: “One, two, four, six, three.”;)


Today doesn’t necessarily mark any special anniversaries or days of remembrance, but I’ve been feeling extremely proud of how far he’s come lately, and how well the rest of the family has adapted, so what more reason do we need to celebrate?


May 21st will mark 2 years since we saw the inside of our last ambulance. (I’m not counting the one we called a month or two after that but didn’t end up needing. I said the inside of one, not the outside :) ;) Can we just stop and dwell on that point for a few minutes? Two. Years. Years. For those of you not living with Dravet, imagine you’re a dog living in a covenant controlled community with strictly enforced leash laws. You get a 4 ft leash, you do not get to choose where you sniff or sleep, and you see the world from the cement sidewalk of your little neighborhood, and that’s if you’re lucky enough to get out of your 0.2 acre fenced yard for a walk once a day. You hear sounds and catch glimpses of foreign odors, but having not experienced them yourself you can’t put your finger on what they are or what they entail.


Now imagine your owner takes you for a drive out to a farm in the country, opens the car door, and… Lets you out! You race across the weed-friendly lawn kept about 5 inches longer than the small patches of lawn you’re used to, drunk with the aroma of new, intriguing smells. You check out the amazing sights, turning breathless circles as you try to decide where to go and what to see. This world you’ve heard of and smelled in brief pockets that drifted in with the wind is suddenly yours, open, and free.


That’s what we feel like. Two years ago we were planning to go to Duck Lake, our grandparents’ cabin in the northern Wisconsin woods. (It’s not really a cabin, but a lake home, complete with a “club,” tennis courts, acres and acres of undisturbed, uninhabited lakes and woods in which to explore, and even a boardwalk around the lake.) We’ve gone every year since we were little, reveling in the fact that it is nearly 2 hours from civilization, and by civilization I mean Wausau, Wisconsin. Sounds big, right?


The Wednesday before we were to leave, Aiden had a big seizure. It was a relatively quick ER trip, but we needed the ambulance’s Versed and oxygen, so it was a required trip none the less. And thus our plans to vacation nearly 2 hours from the nearest hospital were scrapped, to Owen and Alec’s disappointment. That marked the end of a 30 year tradition, and my heart was heavy.


Little by little over the last 2 years we’ve ventured farther from the safety of our small neighborhood. Lately we’ve done things we wouldn’t dreamed of doing before. We’ve climbed mountains and skied trails with not a soul in sight. We’ve traveled to other cities, trusting we could handle whatever Dravet decided to throw at us. We’ve enclosed ourselves in New York’s subway system, for Heaven’s sake, and stood at the top of the Empire State Building together.


We’ve hiked, we’ve waterskied, we’ve spent nearly a week at the very lake that broke our hearts years ago. We’ve felt the warm sun on our faces, grateful for every comforting yellow ray oozing through our pores, because  for a while there even the sun was Aiden’s enemy. We’ve decided seizures are here to stay, but they are not going to rule our life. A groggy, limp, post-ictal Aiden has joined us at basketball games, birthday parties, and any other adventures we happen to be on. And you know what? When he wakes up, he’s glad to be there instead of at home resting and missing out on life. I’ll never forget the time he woke up from a seizure-induced nap on a towel at a the lake, sat up, and druggedly looked around him. “Ah wah wiim.” (“I want to swim.”;) If that doesn’t speak volumes, I don’t know what does.


I don’t dream of seizure freedom, or even complete hospital freedom: I know we’ll hear the sound of the rumbling engine and see the red and blue lights flashing through the window at some point in the future. But how can I not step back in awe of the amazing 2 years of no emergencies we’ve come through? What a gift.


Posted by Nicole on February 16, 2011 at 12:27 PM Comments comments (1)

Are mothers and mother in laws not just the greatest thing since sliced bread? Wait – they invented sliced bread. (That, and every other time-saving convenience we enjoy in our pampered lives as housewives stay at home moms these days. Seriously, watching Mad Men and thinking of how hard this life was for my grandmas, I can only thank my lucky stars I live in the age of washing machines, air conditioning, and wrinkle free shirts.) Getting back to those angels known as mothers.


In the past 3 weeks both my mom and my mother in law have been out here (separately) and they are so helpful in different ways. They play with us, go out to lunch with us, or take care of a fraction of the boys while I tend to the other fraction. I’ve gotten to run outside with Lexie, taken a shower without yelling out the door every few minutes, “Aiden? Are you okay?” and even read a magazine. How great are these creatures we call mothers??


My mom went galavanting with me, out to lunch, and walked the boys to and from school while she was here. Andy and I even got to see a movie together for the first time since July. She did laundry, kept me company during the day, and generally “took over” for a few days. Best of all is her company, though. Real conversation with an adult between the hours of 6am and 7pm - How refreshing!


Then, a mere 2 weeks later, we had a glorious ski day in Vail on Saturday thanks to my mother in law offering to come the same weekend my sister planned a getaway so we grown-ups could ski like we haven’t skied since we were teenagers. Sliced. Bread. (For the record, I am fully aware how lucky I am to not only have one mother, but two watching out for my family and me. My mother in law does not satisfy the general PITA rule out there applying to mothers in law. Never has.)


Want to know the crazy part? I feel like we spend more quality time together since we moved away. These two ladies have always been there for us with offers of help and breaks, but for some reason it’s easier and more fun to take advantage of said offers when they’re staying in the same house with us. I am fairly certain they do not feel the same way and secretly hope Andy gets fired so we’ll move back to Minnesota, but that’s my story and I’m sticking to it 

"I ski"

Posted by Nicole on November 22, 2010 at 1:04 PM Comments comments (4)

We’re all suited up, ears covered and mittens donned, snowpants swishing as our legs brush against each other. Even little Aiden is trodding along, figuring out how to walk in his ski boots and actually doing a pretty good job. Maybe we should have him walk around town in ski boots – they seem to give him a little extra support.





We drop our skis to the ground with a loud “clap,” point our toes into the bindings and all try to click them down. Except Smooch. He just tries to step onto his skis despite our having practiced this at home on the carpeting. After some struggle we are all set to go… and then realize we have nowhere to go. Our choices are: 1. A double chairlift, or 2. The chalet. Wait – what?


In MN the bunny hill is served by a magic carpet (picture the grocery store conveyor belt mounted on the surface of the ground – you step on, skis and all, and are whisked to the top of the “hill”;), a tow rope, a t-bar, or some other mechanical device that keeps your feet firmly on the ground as you adjust to your new extensions. But in CO the bunny hill is like the larger “green” (easy) hills in MN, so what else could they have but a chairlift. Fabulous.


I had planned for things not to go as planned – that’s Dravet syndrome. Aiden wore a harness with a great big handle on the back for lifting him up as he falls, complete with a caribeener clip to hook him on to the chairlift (eventually) because his seizures are strong enough that I might not be able to hold on to him on the lift. We had extra Diastat in our pack, extra oxygen in the car, and no poles for me as I’d have my hands full with Smooch. We were ready. But a chairlift? First?


There was a magic carpet to the left of the chairlift, surrounded by fencing reading “Ski School Only.” I trekked up part of the hill on foot once with Smooch, quickly decided that was not an option, took a deep breath and sucked up my pride, heading for the intimidating ski school instructors. I hate asking for exceptions and special help, but this would be a minor one, easy for them to accommodate, I figured. I politely explained the disabled child who couldn’t enroll in ski school because they didn’t accept kids with special needs, medical conditions, or un-potty trained – triple strike out), couldn’t go on the chairlift because he wasn’t ready and was prone to seizures, and was thus left standing (stumbling) at their feet, his sad little face looking up at them as he pointed to the chairlift where his brothers were already halfway up the hill.


They said no. It was a “liability issue.” How making a small accommodation for a disabled child to ride on the ground is more of a liability than allowing him on the chairlift where he’s likely to seize and can’t load or unload is beyond me, but I wasn’t up for a fight. I was there to have fun. To their credit, they did suggest I enroll him in a $175 private 1 hour lesson. I declined, mentally calculating the $3,000 medical bill we received the day before. And I doubt they grant refunds when kids don’t complete the lesson because they’re seizing. So we turned around and slowly made our way back to the base of the chairlift, unsure of our next steps.


Andy came swooshing down the hill to the rescue at that point like a strong knight in grey ski pants. He attempted the same trek on foot up the hill with him I had already, quickly realized this was not going to work, and scooped him up and said, “We’re going on the chairlift.” I had dragged him about ½ of a mile back and forth across the base of the hill by then and was so grateful for the rescue that I let him take charge, wiping the sweat from under my headband and pushing the “this is not safe” thoughts from my mind as I slid in line next to Alec.



I don’t know how Andy did it, but there Aiden was, dangling 20 feet off the ground on Andy’s lap. I have never been so proud and grateful for my strong “he’s not going to miss out on life” husband. Years of broken dreams of family skiing, knowing Aiden would never be able to join our family in this adventure were put to rest at long last, my entire family safely (?) aboard the same chairlift on a beautiful mountain with snow floating down around us. Aiden’s smile was worth all the extra difficulty, sweat, and tears – he loves to ski!




Getting down the hill with Aiden is a piece of cake, if you don’t mind the burn in your butt muscles. It’s just the “up” that has us confused. Andy took him in the chairlift all day. (And on one 2 mile long chairlift thanks to my poor judgement and navigation. Definitely not a good idea – if he’d seized we would have been stuck up there for 15 minutes before we got to the top. Not to mention the crazy wind at the top of the mountain above the treeline. Oops, lesson learned.)





We left the ski area happy that we’d had such a good time, with lots of stories to tell, Alec in particular. Ask him about his bloody nose. I’ve never seen him so proud.

I don’t know if you’ve noticed, but Aiden’s days are filled with a lot of “no’s.” No, you can’t play basketball like Owen. No, you can’t take hip hop like Alec. No, you can’t play soccer. Or football. Or be on a team of any sort. No, you can’t ride a bus, and no, you can’t go to school by yourself. No, you can’t avoid your meds. No, you can’t take your oxygen or sensor probe off as you sleep. So yes, it may seem a little reckless to take a fragile boy like him skiing, and yes, the resort owners may question why we would even bring a disabled child like him to their area. But spend just one day with him and you’ll realize our job is to figure out how to make the joys of life accessible to him. He’s not guaranteed one more day on this earth (none of us are, but 15-20% of these kids don’t make it to adulthood), so we need to make sure we have no regrets about how he spends each and every day.


We learned a lot about what types of things we need to look for in a mountain and how to handle this exercise in logistics, endurance, and navigation. I spent the rest of the evening thinking about what would be a safe way for him to get up the hill, and only came up with ridiculously expensive methods (one involving a snowmobile and driver from the mountain – not cheap). And finally, falling asleep on my pillow last night, legs and arms immobile as if they were made of lead, it came to me. The gondola! He can ride a gondola! I’m on a mission to find a ski area with a gondola and easy green hills all the way down from the gondola’s exit. I will do my best to find it because my baby loves to ski, and who are we to tell him he can’t? He can. We just need to find a better way to help him up the hill.

Bobo the Horse

Posted by Nicole on October 25, 2010 at 10:26 PM Comments comments (1)

No words....





Just happiness...






And strength....





 And Pride... 

For a job well done.



Adventure #1: Newbies

Posted by Nicole on October 4, 2010 at 10:59 PM Comments comments (1)

You know those thoughts that skip through your head when you’re enjoying something you may not deserve? Those ones that say, “This isn’t a good idea,” or the ever-welcome “You’re asking for it?” Sometimes we ignore them and things work out just fine, and we quickly pretend we never heard them in the first place. Other times we get caught and kick ourselves for not listening to our inner voice of reason, imagining how much easier life would be if we’d just paid heed to the warnings.


Rather than keep you in suspense, I'll come right out and admit we totally lucked out this weekend, and even though I’m glad everything went well, I’m still kicking myself for not listening to the rational advice my mind was trying to dispense. For our first Colorado family adventure (other than the park near our house which, admittedly, has some great rocks for the boys to climb. And a buffalo herd. An entire herd!), we drove up to Guanella Pass about an hour east of Breckenridge to climb our first mountain. About halfway there, Andy and I turned to each other and said, “Did you medicate Smooch this morning?” You could have cut the air in the car at that point with a knife.


No problem, we rationalized: It wasn’t even lunch time, and I’ve missed his morning dose before. We’d be back by 2, he’d be fine anyways, and who knows? Maybe he’d be more alert for the climb. About 30 minutes and 4,000 ft higher we realized we had no cell phone service. See? Even now my shoulders are shirking a little more with each sentence I write. I’m not getting any caregiver of the year awards for this one, but you like the honesty, right?


I was pushing back the “This is not a good idea” thoughts by the barrelful for the next 40 minutes as we climbed the pass in our car. And climbed. And climbed. “There!” I’d think, “There’s another car – we could have them race down the road and get emergency personnel if he has a seizure that doesn’t stop!” with each passing car. Except there is no racing down a dirt road pass 11,000 ft up on a switchback climbing one of Colorado’s “14ers.” (Mountains whose peaks are more than 14,000 ft, for those non-Coloradans.)


I guess I thought once we got near the top we’d have cell phone service – It’s a MOUNTAIN PEAK for Heaven’s sake. Apparently I’m just a naïve Minnesotan who doesn’t quite get it yet. (Should I admit that I also thought there might be a visitor center with a park ranger or someone with a walkie talkie at the base of the summit? Nah – that makes me sound extra inexperienced.)


Needless to say, there was no service at the top. There was no ranger, no visitor center, no passing cars, and no lifeline. We figured we had come a long way and there wasn’t much point in turning back at that point, so we hit the trail. (Here again: How much do you want to know? Does telling you we actually hit the wrong trail degrade your opinion of us even more than I already have?)






It was breathtaking. Literally – Oxygen is scarce up past the tree line, especially on my short stints of hulking Smooch, who’s almost ½ my body weight. I’m so glad we did it because I don’t see us going to quite such a remote place with the little ambulance fiend anytime in the near future! In this case, there’s no forgetting those nagging thoughts even though it all worked out because they were so intensely valid. Therefore, on our list of essentials to buy before our next adventure, we’re including an emergency radio, flares, and perhaps a small portable tank of oxygen. You know: Just in case.



Post-Mountain, off the beaten path

Blue Skies

Posted by Nicole on October 1, 2010 at 11:50 AM Comments comments (1)

We’ve officially been Colorado residents for 7 days now, and I think we’re adjusting pretty well. As expected, there are bonuses and drawbacks, but we’re just glad to be experiencing something new. I feel more alive than I have in years.



Blue skies... every day, framed by Aspens


The two greatest bonuses so far seem to be the weather and the views. Thanks to the never ending deep-blue-not-a-cloud-in-the-sky days, I get to walk Owen and Alec to and from school each day. (Aiden’s photosensitivity rears its ugly head most on cloudy, white-lit days, which there seem to be very few of here!) I never thought I’d be able to walk the boys to school after the first few days last year in Minnesota, when even taking him to the bus stop in the morning landed him in the hospital with nonconvulsive status eptilepticus. It is such a blessing to listen to them pour their hearts out on the way home instead of watching them come bounding off the bus at our driveway, headed straight to the kitchen for a snack.


Photobucket    Photobucket

This is what we see as we walk to school



Which brings us to the other greatest bonus: The views. I wake up, put Aiden in the stroller, and experience this awesome scenery as we stroll to school. I can’t think of a better way to start the day. (Ask me again this winter, when it’s cold and snowy, and there is no bus service for our neighborhood thanks to extremely low taxes, and I may want to retract that statement.)



The view from our backyard - we didn't know it when we bought the house and were pleasantly surprised on move-in day!


We’re going to climb a real mountain tomorrow – a little 3 mile hike do-able for kids (and parents with 45 lb Smooches on their backs), which will undoubtedly bring more inspiring views.


Of course, there are some surprises and drawbacks, too. We love the low taxes…. But can clearly see where our money went in Eden Prairie! As mentioned, there are 4 buses for the entire elementary school. Our neighborhood is not offered service. At all. And when they head to middle school, their bus stop will likely be 2 miles from home. (Seriously? At that point, I might as well drive them all the way.)


Aiden’s preschool is nowhere near as comprehensive as it was in EP. I am nervous about him starting and have some advocating to do before that happens, since there’s no nurse on site, he doesn’t have a 1:1 aide, and there are no extra rooms he can go to when he’s overstimulated and his eyes flutter. They say they’re experienced with seizures, and I’m sure they are.  But we’re in the business of seizure prevention here – not seizure response.




No alert on this seizure... But still a perfect response, complete with kisses :)


And, of course, some things never change. He had his first big seizure in CO on Monday. It was a nice stretch there, being able to say, “He’s never had a big one in this house! Or even this state!” for 5 days. Oh, well. If you have to deal with seizures anyways, you may as well enjoy the view and relax in the amazing sunshine while he recovers, right?  8)

Hi! My name is...

Posted by Nicole on September 25, 2010 at 10:24 PM Comments comments (4)

Dear New Neighbors,


Hi! My name is Aiden, and I just moved in to the cul-de-sac. I am almost 5 years old and love “Buh-Bee,” which means “Bumblebee,” Dad’s yellow jeep. I will probably tell you about him and Trixie, my therapeutic riding horse, the first time I meet you. Just thought I’d give you a clue as to what I’m saying since you won’t understand me. But talk to me a few times and you just might catch on. I apologize in advance if I call you a Dirty Hoe. I just think it’s funny. (If you’re confused on that one, see a blog entry from last winter.)


My mom isn’t sure how to let you know that I’m different from most of the kids on our cul-de-sac. She worries sometimes that she makes too much of my condition, Dravet syndrome, and that other people won’t really notice, so she doesn’t always come right out and explain why you can’t understand me. I guess she’s become accustomed to me and can’t really remember what typical 5 year olds are like. Sometimes she talks about it, if she feels comfortable with you, but usually she just can’t decide what to burden you with and what to leave alone.


If you see me outside in the front yard alone, I’m not supposed to be there. Please go get her, since I don’t understand safety around cars and have seizures in sunlight that can leave me lying on the pavement nearly undetectable to passing cars. It takes an entire village to raise me, and we just left ours behind in Minnesota.


If you take the time to get to know me like my old neighbors did you’ll find I have a lot to say and a lot to offer. I just love strangers. And my bike. I really love my bike. I escape for a ride many times a day, until my mom finally gets fed up at about 3:00pm and puts my bike up on the hook in the garage. That makes me really sad.


I don’t understand why we moved here or why I am suddenly in a new house. I want to see my grandma, who I think will be “Wyy baa,” or “right back,” despite the fact that I drove 14 hours in a car straight away from her to get here. I also think my Aunt Lisa will be wyy baa. Mom says she we won’t see her for a while, but I don’t understand time, so I’ll just keep asking each day in case the time comes. I am sure I’ll get to ride my horse, Trixie, again. Mom can work magic with the car – she’ll take me to riding on Tuesday in Minnesota, right?  I'll keep asking every day just to make sure.


So that’s a little about me. I hope you’ll see beyond my inability to communicate and will find the affection and innocence I possess like no one else. And please don’t be scared when I have a seizure in front of your house – it’s okay. Just go get my mom if she’s not there. Or my dog. She’ll know what to do.


As sincere as can be,


Aiden, or “Smooch” as my family calls me

Goodbye, Home

Posted by Nicole on September 18, 2010 at 2:42 PM Comments comments (1)

Dear New Owners,


I hope you fall in love with this house as deeply as we have over the past 8 years.  We thought it may be worth explaining a few of its quirks as we turn it over to you.


Don't mind the gauge in the wall behind the couch.  It says, "Someone took his first steps here.  And his first tumble."  Likewise, the nicks in the stairway tell stories of stumbly toddlers learning to explore their own surroundings.  While we're on it, don't replace the carpeting on the last step just yet - It may be more worn than the others, but it has padded many kids' stumbles, races, and flailings well.  It cradled my baby's head during his first seizure.  Don't worry, though, even that memory has blossomed into a string of life-changing events we would never want to forget. 


Yes, there is still a nursery.  And no, you don't have any babies.  Technically, neither did I anymore, but I just couldn't paint over the serene nursery walls.  Know that no matter how many layers of paint your place on the wall, the blessing will always be there underneath, keeping you and your sleeping child safe.  "The Lord bless you and keep you.  The Lord make his face to shine upon you and be gracious unto you.... And give you peace."  And He does, all through the night as the moonbeams dance through the snow crab leaves just outside the big picture window, all night long.  We just had no idea how important that blessing would become for the baby who lived there and lives closest to Heaven each day of his life. 


I realize there's a rope grown so far into the tree by the swingset it looks as if it's been swallowed up by time.  I suppose it has.  It belonged to the boys who climbed the tree before we moved in.  Our boys replaced it with a new rope, and I hope you'll do the same.  The tree has grown so proudly and longingly:  Don't let its branches get lonely, reaching up to hold children, listening for their faint laughter in the distance.


I forgot to transfer the boys' growth chart from the wall in the garage.  Please don't paint over it.  They're still a work in progress.


If you take up the kitchen floor, you'll find the old linoleum one right there, silently keeping its secrets of bare feet, knees, and  hands slapping against the cold squares as little ones learned to crawl.  Leave it be.








The street:  Shepherd Way.  You'll find, in time, that it's named Shepherd Way for a reason.  You are the sheep, and this house will take you into its fold and make you feel so safe, so loved, so happy.  Enjoy.  We did.  It'll always be home to us, and we hope you'll be as happy there as we have been.

IDEA Leauge Conference 2010

Posted by Nicole on September 8, 2010 at 11:51 PM Comments comments (0)

One of those experiences from the past 3 weeks does deserve a bit of attention, albeit delayed by our ridiculous week: The Dravet syndrome Family and Professional Conference.


The IDEA League (the voice for Dravet syndrome) hosts a conference every 2 years for families and professionals to "Share research, Share hope.”  We missed the last one because our previous neurologist was an egotistical idiot (did that slip out? Let me rephrase:) reluctant to diagnose Aiden because he could pick up his cars and put them on the table.  “See? You don’t see that in Dravet,” was his reaction when we finished our appointment and I asked Aiden to clean up his cars.  There were two.  I’m still ashamed that I was fooled by his calm, reassuring demeanor and didn’t request a 2nd opinion sooner. That’s not like me at all!  But when you’re looking at your relatively typical small child (hoping for the best outcome) and the rich, smart, handsome neurologist says, “Oh, it couldn’t be that – he’s way too advanced,” you’re inclined to believe him.  Until the regression starts.


I didn’t know exactly what to expect from the other parents or the other children.  I consider them my second family and we exchange messages every day on the parent forum, but I’ve only met a couple of them before.  And I’d only known one other child with Dravet syndrome, so I was looking forward to meeting more.  The experience was calming, humorous, concerning, and reassuring all at the same time.  While it was wonderful to be surrounded by a room full of parents who walk in the same shoes every single day, it was concerning to be around children who were doing both better and worse than Aiden.  We know that all he’s achieved can be snatched from him at any point, and we worry we’re not doing everything we should be when we see children doing better than he is.  Damned if we do, damned if we don’t.  (For what it’s worth, I think that should be our new motto.  It encompasses Dravet syndrome, the seizures, the meds, the choices we make as parents, and our visions for the future so well!)


I didn’t ever cry outright, but came closest on the second day at dinner.  We had spent the afternoon playing hooky at the beach, where Aiden’s fun was cut short by a seizure, per usual.  Another child had a seizure right there at the dinner table, and Drs. Charlotte Dravet and Linda Laux themselves came over to tend to her.  I was suddenly overwhelmed by the bond we parents share - the commonalities we have to each other that no one in our community has.  I looked around the room at the understanding faces and the emotions swelled right up past my throat.  There were probably a number of children who had seizures while we were there - just a day in the life of any one of the parents in the room.  I was also overcome with a sense of hopelessness – If the best doctors in the world couldn’t offer anything more than oxygen and rescue meds, what more can I possibly offer Aiden?  And what does that mean for his future?  Where is the research? Where’s the silver lining?  I suppose this is what we get:  If your child is going to have a status seizure away from home, you're best off in a room full of the world-reknowned doctors, oxygen tanks and pulse oximeters galore, and other Dravet moms who will bring you a piece of chocolate cake along with the extra oxygen. 


Luckily this syndrome comes with a humor button, too – these kids are hilarious.  When we got back to the room from the beach we found this note slipped under our door: “We at the Hyatt apologize for the inconvenience this afternoon.  An unidentified individual pulled the fire alarm near the ballroom entrance, and emergency personnel were summoned.  We sincerely hope the wait outside did not interrupt your day more than necessary.”  Andy and I burst out laughing:  With 50 Dravet kids running around this hotel, we knew it was “one of ours,” and were actually surprised no one had done anything more serious yet.  (How many of us parents cringed at the sight of the fish ponds in the atrium as we checked in, visions of our children trying to swim in them dancing around in our heads?  Or the multiple service dogs trying to behave under the tables at dinner?)


So I say the conference was calming, humorous, concerning, and reassuring all at the same time.  Much like the roller coaster we ride every day, I suppose.

Warp Speed

Posted by Nicole on September 2, 2010 at 5:23 PM Comments comments (0)

We asked for adventure, and adventure we have received. I sort of thought it’d be one adventure at a time rather than 13 of them all at once, but I guess we’re getting our routine lesson in flexibility, amplified by about 500%.


In the last 3 weeks we have:


Started a new job in Denver (Andy)


Gotten the house ready and put it on the market (Nic)


Had a whirlwind 11 showings in 3 days (Nic, 1 grandma, 3 boys, 2 dogs, and 1 ralphing cat)


Sold the house


Put one dog to sleep (but not the ralphing cat, despite a clear and present desire to do so)


Traveled to New York City with an entourage (Andy, Nic, 3 boys, a service dog, 3 grandparents, and 1 aunt)






FYI:  When they say "0% visibility at the top of the Empire State Building," they mean it.  Alec's interpretation?  "I feel like a god!"

Mastered airplanes, airports, taxis, vans, a harbor ferry, the subway system, Amtrak, and Central Park (Lexie, the awe inspiring wonder dog)


Endured 3 big seizures, much to the dismay of one teenaged lifeguard (Aiden and Lexie)



Mmm.. Ice Cream.  Lexie knows he's the only one she's allowed to steal food from.  Owen performed a rhyme in Times Square for the hat, which he gave to a very, very happy Smooch.


Attended and presented at a Dravet syndrome Conference in Connecticut (Nic and the entourage)


Returned home at 8:30 pm to no power


Hopped back on a plane to Denver at 5:30am the next morning, still sans power and clean laundry (Andy and Nic)


Toured 45 houses (Nic and the realtor)


Submitted an offer on a new house (Nic and Andy)


I haven’t had time to write about all of the experiences we’ve had in the past 3 weeks, each of which would warrant their own entry had they occurred on their own. There have been tears, pride, frustration, confusion, and general mayhem. (Imagine all of us confused Minnesotans trying to get our children and luggage through Penn Station’s multi-level subway terminal in New York. Then add one dog in a pretty red cape and you get the idea.)


Oh: Did I mention the moving truck comes in 13 days? 13 days???


This journey has hit warp speed, and we’re holding on for dear life!

Chapter Two

Posted by Nicole on August 5, 2010 at 11:22 PM Comments comments (1)



So… We’re about to give up all of the supports we’ve put in place for Aiden here in Minnesota and move to Colorado. Are we absolutely crazy? Probably. I mean, there’s not a lot of logic in giving up the stiripentol coverage, Medicaid waivers, hippotherapy, respite care, family support, school aides, IEP, and oh yeah – the world renowned neurologist we have fought for in MN. But there’s got to be something said for having fought the battles once already, right? Right??


I can’t quite explain why we’re going except to say that it feels absolutely “right.” I could say we just want to live life to the fullest since we don’t know exactly how long Smooch will be with us, but that’s not the rosiest picture to paint for the family we leave behind. I could say Andy and I have always wanted to live in Colorado, but that’d just be a blatant lie. Sure I love to ski in the mountains, but who are we kidding? I haven’t been out there in 13 years.


So here goes: We are moving because we want to. We want to see what’s past the Mississippi River. We want to explore together as a family, to go on an adventure we’ll all remember. We want to show our kids it’s okay to try new things and to move new places. We want to show ourselves it’s okay to try new things and go new places! We want to broaden Andy’s work experience beyond Best Buy. We just want to feel life again. You know – the fear, the joy, the little flutters your heart makes as you embark on a life changing event. We’ve been treading water in life for a few years, accommodating a child who just can’t do the things we envisioned our family doing, and we’ve decided it’s time to spice his (and our) life up a little bit. At the risk of going all high-school pop-country on you, there’s a great Tim McGraw song:


"I went sky diving, I went rocky mountain climbing,

"I went two point seven seconds on a bull named Fu Man Chu.

"And I loved deeper and I spoke sweeter,

"And I gave forgiveness I'd been denying."

An' he said: "Some day, I hope you get the chance,

"To live like you were dyin'."

Like tomorrow was a gift,

And you got eternity,

To think about what you’d do with it.

An' what did you do with it?

An' what can I do with it?

An' what would I do with it?


Okay, so no one’s dying any time soon. But still: Life is a gift, which we are reminded of almost every day. And we want to experience all we can. Now. It’s not like it’s going to get any easier. We will miss our family and friends dearly, but plan to be back often enough to continue to develop the deep relationships our kids have with their grandparents, aunts, uncles, and cousins. So Colorado, here we come! Or more appropriately, Colorado, here Andy comes – for now!


p.s. Does anyone want to buy a great house in the Number 1 City in the USA? ;)

We're a team, I guess.

Posted by Nicole on May 31, 2010 at 10:11 PM Comments comments (2)

So, after some weekends I feel like we’re doing a pretty good job of keeping Owen and Alec’s lives within the realm of normality. After all, they occasionally get to do things like this:




And this:




But then again, they also do things like this:


("We dream of a world... where no one has seizures!"  And a bottle of Keppra, one of Aiden's meds)


And this:


("My wish for 2010 is that scientists find a cure for seizures.")


(Let me just mention here how grateful I am for teachers. Especially for teachers who scrapbook. And for teachers who laminate and scrapbook my children’s artwork so I don’t have to! This blog is by far the closest thing I have to a hard copy of our lives – the boys’ baby books still lie unfinished in the basement.)


I was brought to tears when I went into Alec’s classroom last week and saw what his little mind has been working through this year. The other parents were probably trying not to stare at me as they looked through their own child’s artwork, thinking I am some sentimental fool who cries over first grade art. But I’m not, and I don’t. In fact, I usually consider saving one piece of artwork per year a good compromise. One!  Per child! Per year! I feel a little heartless throwing everything else out, but seriously – doesn’t it all look pretty much the same? 


For the most part, we try not to dwell on Aiden’s seizures any more than necessary. But I guess “necessary” goes a little farther than I realized… That's why I was so surprised when I saw these images - we don't talk about his meds very much.  I had no idea Alec even knew what Keppra was.  We pray that God will keep us all safe at night, but I don't specifically ask that God keep Aiden safe as opposed to his healthy brothers.  I don't want them to worry about that.   And I have never once prayed out loud for scientists to find a cure.  It isn't fair to put that on a 6 year old's mind, is it?


So these images left me speechless.... There's this odd mix of pride for his sensitivity and guilt for the burden I've obviously let fall on his shoulders more than I thought.  That's the nature of this roller coaster, I suppose.

One door closes...

Posted by Nicole on April 11, 2010 at 10:44 PM Comments comments (0)

When one door is closed, another is always opened. The size of the doors seems to vary, though. Sometimes a large door slams in our face and the small mouse-sized door that opens offers so little consolation it feels like a joke gone wrong. Then again, sometimes it’s a small door that closes so a mammoth carriage-house size door made of rich mahogany can open.


I’ve gotten used to seizures, for the most part. Very few really scare me anymore, especially since he hasn’t been needing an ambulance or the hospital to stop them lately. He’s been breathing fairly well through them, we’ve been able to stop them, and he hasn’t turned a scary shade of blue in quite a while. But I was scared when, last week, I looked up to see his arms fly over his head, his back arch, and his head jerk violently backward at the start of a big seizure. Oh, and he was on his bike about 10 feet in front of me.


Let me rewind. He had been a little off all week. His atypical absence and myoclonics were up, and the zoniness of last fall (pre-Stiripentol) was back for some unknown reason. I prayed he would snap out of it and would be able to enjoy the little family get-away we had planned at the waterpark for spring break. But God didn’t seem to be listening, and he just got worse.


After spending the entire sunny, warm, beautiful day indoors with all three of them because Aiden was “off” (did I mention it was spring break)? I thought a quick bike ride before bed would be okay. He did great! He chased his brothers, smiled throughout, and needed minimal pushes up the driveway at the end. So I thought we were home-free and let my guard down a bit, letting him go on ahead of me into the garage.


But it was that moment when Lexie (who was on her leash at my side) lurched forward, taking me by complete surprise, and let out a little whimper type sound. My eyes instantly moved from her to where she was headed, and that’s when I saw Aiden arching with arms over his head off the back of his bike. Onto the concrete floor of our garage, head first. You know how in dreams you try to run toward or away from something but your legs seem to be filled with lead, and all you can do is watch as the event unfolds in slow-motion before you? That’s what it felt like.


Lexie was on him, licking his face as he convulsed violently on the ground, then laid down beside him as the convulsing slowed down. (Okay, if I’m totally honest, she laid down on his head. As in, RIGHT on his head. We may need to work on that a bit. But she kept her post until I brought him inside.)


Such a sad little boy, such a good girl



I was shaken up and felt pretty sorry for all of us. Why do these things have to happen to him, and what were we thinking planning to take him to a waterpark the next day? It looked like I was destined to spend the entire afternoon in the hotel room watching movies with him while his brothers and Andy had fun playing. But gosh darn it, we were going as a family, and we weren't leaving Smooch behind.


It turns out God was listening, and just had His own way of answering my prayer. Just when things seemed hopeless, He woke that child up the next morning and wiped away every trace of seizure activity.  It’s like the electrical activity just builds and builds and builds, and after it’s released he has some reprieve. I had completely forgotten this from last summer! That small door (what’s one seizure, in the big scheme of things?) that slammed in our face on Wednesday night in the garage allowed another, grander door to open for us the next day. 





We had a great time on our vacation, even if it was shorter than 24 hours. We were normal. We did a normal family thing. And it was truly Heavenly. We are so blessed!



The Lake of Normalcy

Posted by Nicole on January 18, 2010 at 10:45 AM Comments comments (0)

Smoochie Bear doing what he loves -  speeding through the neighborhood in "Bumblebee" (Dad's yellow jeep), with the rare freedom of no glasses and the wind in his hair


You know how when you get pulled over for speeding you suddenly drive more carefully for the next few weeks or months… until gradually you start to forget the panic you felt at those lights in your rear view mirror, and your bubble of invincibility expands and surrounds you once again? It’s the same with the sleeping beast called epilepsy in our house. After he has his big seizures, or even days’ worth of smaller ones, we are much more careful about keeping him safe and away from triggers. But the memory is a beautiful thing, as anyone who’s given birth knows. It pushes scary, uncomfortable things to the back of the mind to allow us to live a little more freely without the looming fear of a speeding ticket. (Until it happens again, of course, and the cycle starts over.)


So happy

There’s been a return of relative normalcy in our house over the past month. Aiden’ hasn’t had a big tonic clonic (grand mal) seizure in more than 4 weeks. 4 weeks! That’s a record for the past year by… about 3 weeks. Aside from the lightbulb incident (which wasn’t life threatening and therefore pretty trivial), I haven’t had contact with a paramedic or emergency personnel in over a month. Of course, he’s having small ones and odd behaviors, but those are merely frustrating – not too scary. And just like after a speeding ticket, we’re slowly starting to dip our feet into that lake of normal things families do, like going to someone else’s house with Smooch, or going to church all together. It feels good!


Dipping our toes is a big step. In the past, even the thought of inching toward that “normal” pool would be interrupted by another seizure. I took Aiden out the other day and forgot his sunglasses. I completely forgot them! I NEVER do that, and a few months ago, forgetting his glasses would have meant a scrapped trip, as I would have turned around to get them, no matter how far from home we were. Aside from the elderly cashier who insisted on calling him “she,” no one looked at us funny or commented on his movie star appearance. We actually blended in, and it was blissful. And he was fine.


A few nights ago I took the boys to my sister’s house. There were 7 kids, and they spent a good chunk of the time playing down in her basement while we moms chatted upstairs. I can’t remember the last time I’ve been there and Aiden has been with it for 80-90% of the time. Usually, when I go check on him downstairs after we arrive, he’s having smaller seizures and winds up sitting on my lap until I can’t take it anymore and tell her it’s time for us to go, just an hour or two after we’ve arrived. But that night we were like a normal mom out with her 3 kids. Normal! That’s become this foreign word to which we aspire, like other people would talk of “stylish,” or “chic,” or for those well-traveled, “European.”


I’m sure the seizure police are out there waiting to nab us again… But until then, we’re speeding down the freeway feeling the wind in our hair. Just cutting down on the frequency of seizure tickets allows our lives to at least stay within reach of that elusive lake of normalcy. And we plan to stay here for now!