Aiden's Journey

One Little Boy's Battle with Dravet Syndrome

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Joy to the World!

Posted by Nicole on December 30, 2010 at 10:57 AM Comments comments (1)

JOY TO THE WORLD!

 

I saw those words lit up in a small town square yesterday morning at 4:00 am as we drove the country roads through South Western Minnesota, on our way home to Colorado after nearly two weeks with our families. Early morning captures the peace and tranquility of miles of farm fields buried in 3 feet of snow like no other time, the crescent moonlight reflecting off the snow tinting everything just slightly bluish. Most households had turned their Christmas lights off for the night, but the few left on timers shone like beacons across the frozen, sleeping land.

 

JOY TO THE WORLD!

 

A savior is born! (The implied words left off the sign for political correctness.) Of course - it is the reason for the season, and the meaning behind all of the travels, presents, lights, cookies, and decorations. But I read those words differently yesterday, for unto me a child was born this year. Not a baby, but a child full of grace, a child full of happiness, a child who brought JOY to everyone as he opened his very own presents. Christmases past have been wrought with seizures, confusion, frustration, pity that he misses out on everything fun, and bitter sweetness. Last year was closer, but this year tops what I thought represented progress.

 

JOY TO THE WORLD!

 

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#1 gift?  Monster Truck Mater.

 

 

 

Aiden had the best Christmas ever, meaning the rest of our family did, too. He dove into his presents, stopping to play with each one he opened with the biggest grin of amazement you’ve ever seen. He skipped over the clothes and pulled out the toys like any normal 3 year old would, and his “haa ooo” (“thank you” ) was so precious I could’ve bottled it up just to open it and breathe in this sweetness of blossoming child whenever I please. He opened and closed our trip with seizures like bookends – one in the car 12 hours into our drive, just over the Minnesota border, and one just before bed the night before we left. (Plus one as we unpacked at home last night for good measure – Thanks for that, Smooch!) The flutters came right along with us to Minnesota, but he was happy, so we were too. Beginning this journey I never would have said I’d be happy to see 3 grand mal seizures in less than two weeks, but time brings perspective. Who knew “seizure free” wasn’t what I should have been hoping for back then?

 

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Peace and tranquility are not exactly words I use often to describe our family of five and a service dog. You might not use those words, either, especially at the beginning of a long drive back to Colorado in a car stuffed to the gills (despite the newly acquired roof rack), a panting dog in your ear, and Aiden talking to himself in the back seat with bright eyes and a bushy tail at 4:00am while we propped our eyes open with toothpicks. But I felt peace, tranquility, and joy yesterday thanks to the frozen tundra “back home,” a small town Christmas sign, and the child born unto me this past year.

 

JOY TO THE WORLD!

 

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Okay, so it's not Smooch.  But how cute is he? 

Have you ever seen a little boy so excited for a Harry Potter scarf? 

 Thank you, Grandma Jean!

 

 

Done and done.

Posted by Nicole on December 15, 2010 at 10:27 PM Comments comments (2)

And... We're done.

 

Or "we've finished," though that doesn't sound nearly as final as the grammatically incorrect version.  Aiden's been getting steadily worse since the last entry 5 days ago, despite my best attempts to manipulate his diet and calculate/serve exactly what the dieticians tell me to, so we can honestly say his ups and downs were just the natural roller coaster we live called Dravet.  The day after the last update he had a big seizure out of the blue, keeping his regular 7-10 day frequency, and over the past nearly 3 weeks there's been more bad than good, more frustration than hope, and more drawbacks than potential payoffs.  

 

The good news?  It turns out he was pretty much on the 4:1 (ratio fats: protein + carbs) ketogenic diet for the past week, albeit with too much protein and too many calories.  Though MAD is not as restrictive as keto in terms of protein consumption, calorie and fluid restriction, or measuring food, "pushing fats" seems to be the key in reducing seizures, and once you've pushed the fats to the upper limit there's not much room for anything else, which is how we inadvertently ended up at a ratio of 4:1 (fats:carbs+protein).   All dieticians are careful to stress that the diets can take time to work, though many of the children who are ultimately successful on them see some sort of progress in the first two weeks despite the lethargy and difficulty.

 

The bad news?  I feel stuck between a rock and a hard place in that I feel like I gave it my best shot this time and it wasn't doing any good.  After tearing the candy cane off the card his teacher gave him yesterday, right in front of his face (that's the one thing he's consistently asked for each day:  candycanes) and explaining that he couldn't have any sugar or carbs because of the diet that was supposedly helping his seizures as we left the classroom because he was having so many seizures, I realized it was not working.

 

Yes, we could have pushed through and stuck with it for the recommended 3 month trial period, as any good dietician will suggest.  At the same time, he goes through so many ups and downs that who knows if, in 3 months, when he was much improved, it could really be attributed to the diet anyways? Seeing how tired, sad, and still fluttery he was, and how happy, energetic, and talkative he is this morning (though still fluttery), I'm feeling better about this decision than I was last night.  It involved a few tears, feelings of inadequacy, and two margaritas.

 

Feel like you're getting two different stories on this blog? Welcome into our heads and our lives.  Chasing seizures is like chasing a fly - you feel like you're about to catch them and then they take a quick turn to the left, leaving you standing thinking, "Was I really as close as I thought?  Or did my eyes betray me and I was never about to catch them?"

 

It's not a science, as much as I'd like to force it to be. 

Oh, Crap.

Posted by Nicole on December 10, 2010 at 11:24 PM Comments comments (3)

You know that point when you’re teetering on the edge of something big, and you look back over your shoulder thinking, “What the hell am I doing? Life was good!” and at the same time you glance ahead to the chasm of the unknown and think, “But what if..?” That’s where we are.

 

After a week of his usual ups and downs seizure-wise, with a lot of added lethargy and exhaustion from the new diet, he seems to have turned the corner, his body learning to process fats for energy rather than carbohydrates. (Disclaimer: It could totally still be his usual ups and downs and another big one is bound to rear its ugly head one of these days, but optimism is precious. I’m sticking to it today. Day 10 and counting.) He’s not complaining of hunger anymore, I don’t feel the need to check his ketones every hour, and he’s developed a few favorite foods we’re comfortable with.

 

But where the heck does that leave us?? I’ll tell you exactly where: It leaves us ready to head back to Minnesota in 7 days for a good old fashioned Christmas with the best cooks known to mankind: grandmas. Christmas cookies, other people’s kitchens, and cousins – they all spell disaster. Or at least glutton. And a buttload of sugar. (On that note, don’t ask me how we’re planning to get his oxygen tanks, diet necessities, and Christmas presents into the car – the boys and I may be able to get to MN, but Andy is going to have to strap himself to the roof for the way home. I’m totally okay with that.)

 

I still don’t know if the diet is helping him, but holy cow has he been on fire the past couple of days. Remember that Diego puzzle I mentioned a few weeks ago? Well, he dumped out a similar Cars puzzle today, and proceeded to complete it. By himself. (Okay, so I had to fill in the edges where there are no characters, but he did 80%!)

 

And school? He’s the model classroom pet. His attention span is, oh, about 16 times that of the fish-like tendency I usually describe him as. The kids there take such good care of him, telling him when to clean up and when to put his books away, and he’s downright calm there. (Does lying on the ground in the middle of group time half falling asleep count as calm? No? Okay, so then maybe he’s a little lethargic.)

 

I cook. A lot. I throw food away. A lot. But he had one eye flutter today. One! I’ll cook circles around anyone to keep him at that level. There have been some tough, perseverance testing days these past two weeks, accompanied by an exorbitant amount of praying and asking for “signs,” and I will have a lot of explaining to do when we get back to the relatives’ houses. Who knows? He may tank tomorrow and it won’t even be a big deal. But the “Holy crap, what have I done?” feeling is looming right about now. Hang on, Family, Here we come.

Rock. Stars.

Posted by Nicole on December 6, 2010 at 11:06 PM Comments comments (2)

I must have hit some sort of jackpot in my 20’s and just bumped along the road listening to my music completely oblivious to the sudden windfall, because the boys in my life are the biggest troopers I’ve ever met. And they’re all mine! All 4 of them! (BTW: Life out here has made me comfortable enough to finally admit it: I like country music. I hid it for a long time (thank you, Carleton), but it’s “okay” to just tune that radio station to country and bump along the road out here in Colorado. Bliss.)

 

Anyway… These boys deserve one great big pat on the back, complete with a round of applause and whistles for what they endure. In the past 7 days alone we have seen:

 

Andy not on board with our new Modified Atkins Diet one bit after the previous failed attempts, but loving his wife enough to know she had to try again. He hopes it fails every day because, let’s face it, life was WAY easier before this and the likelihood of it helping Aiden based on his previous track record is not so hot, but he still eats the meals I make, conforms to it, and doesn’t give me a hard time.

 

Owen stepping up and acting like a man when even other mothers wouldn’t hold my purse (Thank you Owen!) and the dog at the same time, and eating his food in secret so as not to tempt Smoochie Bear.

 

Alec not only eating in secret, but actually yelling for me when Smooch stole an animal cracker from him. How many 7 year olds know that one animal cracker can wreck an entire week’s worth of ketosis? And he was smart enough to tell me as it happened so I could fish it out of Smooch’s mouth! Rock. Star.

 

Last, but not least, the trooper none of us will EVER be able to top: Aiden. It’s been a tough week, but he has weathered every piece in the most graceful, strong, understanding manner. (Well, some things were, um, less than graceful, but we’ll cut him a little slack.) He can no longer eat bread, crackers, chips, milk, cookies, tortillas, pasta, fruit, ice cream, or anything else with carbohydrates in it, but he’s found new foods to love and hasn’t whined or complained when I’ve said, “no.” He has asked for candy precisely once, and even went out to dinner with us on Friday night and didn’t complain that his cheeseburger had no bun, his plate had no fries, and his beloved Sprite was replaced as I poured his concoction under the table. He’s found new foods to love (Fage full fat yogurt, all 23 grams, mixed with loads of coconut oil and almond oil, with the smallest bit of strawberry preserve you’ve ever seen for a grand total of 52 grams of fat - mmm, tasty), and has almost forgotten life before the diet.

 

I don’t know how long we’ll keep at this - It’s tough to tell whether it’s working, but one thing is certain: it’s not hurting him this time, and who knows? Maybe the fats and oils are helping his brain heal. That’s the theory, and I’m up for giving it some time to work as long as he’s relatively happy. 4 years of daily seizures might just take some time to heal.

 

I don't think most people are lucky enough to have 1 trooper like my guys, and I have 4.  So. Darn. Blessed.

MAD

Posted by Nicole on December 4, 2010 at 1:26 PM Comments comments (0)

I sat in the waiting room at Alec’s hip hop class with Owen, Aiden, and Lexie, trying to busy myself and make it look like I wasn’t completely eavesdropping on the conversation between the two moms next to me. One was a homeschooler with 4 children ages 9, 5ish, 3ish, and about 18 months. I listened to her complain about how exhausted she was and how she was having a hard time preparing for the science experiment she and the 9 year old were supposed to run the next day while her 18 month old toddled around happily, playing with her mittens. “Between curriculum development and correcting her work, I haven’t seen my husband much since September.”

 

I listened to the other mom return the exhaustion complaint, listing her grievances about how everything was just so hard for her 8 year old daughter (in hip hop with Alec.) She has a hard time making friends due to her “quirks,” and her handwriting is not up to par. “Why can’t just ONE thing come easily for her?” was the mom’s complaint. I looked up to see the daughter happily dancing away to Lady Gaga’s “Pokerface” inside the studio, on beat, smiling, and following all of the instructor’s directions. Look at her! I wanted to scream. Pay attention to how happy she is, and what a good dancer she is! I didn’t.

 

The next week we were settled in our chairs in the waiting room again, the other moms commiserating as we all do. I was watching Aiden, who started a new Modified Atkins Diet (MAD) this week in hopes to help attenuate his seizures. It involves an insane amount of fat, minimal protein, and virtually no carbohydrates, causing his body to burn fat and produce ketone byproducts which are spilled over into his urine. It’s hard on us both, but not nearly as hard as some diets, like the ketogenic diet. We’ve tried this before with serious side effects, but every year or so I get into an obsessive compulsion thinking diet might help him, if I can just do it right this time. He was on Day 2, tired, a little lethargic, but in moderate ketosis and not yet vomiting, so we were doing okay.

 

I heard a loud “thump,” and looked down at my feet to find Aiden face first on the concrete floor convulsing. For 4 straight minutes he convulsed, Lexie catching his drool on her head as she cushioned him. One other father did offer to call 911, but we didn’t need it.

 

I had the Diastat drawn and ready to go, but pulling down a 5 year old’s pants in front of an entire room of people to rectally inject Valium isn’t anybody’s 1st choice, so we waited it out and hoped it would end on its own. It did, and he rested peacefully on my coat for the rest of the hip hop class. Conversation slowly returned to normal.

 

Everything is just so hard for your happily dancing daughter? I’m having a hard time commiserating right now. She chose her foods for breakfast, lunch, dinner, and all snacks, got dressed by herself, came to a fun dance class, went to school, and talks to you about what she thinks. Heck, she talks to other kids, too. She only has 3 friends? She’s lucky as far as I’m concerned. 3 is plenty.

 

After class, I went to pick him up and nearly fell over trying to get his limp 45lb body up to my arms without leaving him and fetching the stroller. The mom who was complaining looked down and said, “I’d offer to help, but I’m guessing you’re used to this.” I nodded, not quite sure what else to say. How do you accept an offer of help that isn’t really an offer at all? Because it would’ve been great if she could’ve handed me my purse once I was standing. But I guess I’m “used to this.” Does that somehow make it okay?

 

Update: He’s on Day 6 of the diet and doing pretty well. He’s in moderate ketosis, has some lethargy in the morning but seems to perk up after a good 10:00 meal, and hasn’t thrown up yet. He’s eliminating okay, drinking well, and his eye flutters seem to perhaps be reduced (except for in the morning). I’m not counting the seizure on Tuesday as the diet failing because A. He was due for one, and B. I gave him 3 drinks with aspartame, a known seizure trigger, those first two days because I was trying to make his drinks “fun.” Lesson learned. It’s too early to tell if this is worth it yet, but at least we’re actually getting past the induction phase of this diet for once.

My Christmas List

Posted by Nicole on November 28, 2010 at 10:44 PM Comments comments (1)

It’s your lucky day! Had you seen my original entry today, you’d have been down, depressed, feeling like there’s no hope… you get the picture. But fear not, gentle reader, I am back to being positive tonight. You know how sometimes you open your mouth in what seems like pure honesty, and then just a few hours (or minutes) later you wish you could suck those words right back in? Today I actually had the will power to put the computer down and not say things I’d certainly regret tonight.

 

Let’s keep it to this: My Christmas list. Infer from it what you may, and imagine the 1200 words I had written on items 1-5 earlier today.

 

1. Bedtime. All of my children in bed (to stay!) at a reasonable hour (8:00? 9:00? I’d even take 9:30.)

 

2. An angel to potty train Aiden. I tried again the other week to no avail. Obviously not blog-worthy, since success was not to be had.

 

3. Preschool. You know, the normal 2 hour break moms of young children aspire to, “one day,” when their youngest finally makes it there. Not the breaks our family members give – those are great but always make me feel guilty – the honest, deserved preschool break.

 

4. An insurance company who’ll listen to the patient and not hide like cowardly sniveling rats behind their “policy.”

 

5. An angel to handle the medical bills. Not just to pay them (that’d be great!), but to go through them with a fine toothed comb and figure out which ones are our responsibility, which ones were misprocessed, which ones should have been paid by insurance and were not, which ones apply to our current out of pocket maximum, and which ones apply to our old insurance’s out of pocket maximum.

 

6. A day without seizures, big or small. (A longshot, but it’s worth a try, right?)

 

I will fight the good fight, both with insurance and with school tomorrow, and Andy put Christmas lights on our fence in the backyard like I had hoped, so all is good… now. Let’s give a toast to the old rule of “counting to 10 before you say something you might regret,” and be thankful for the life we have.   

"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.

 

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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.

 

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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!

 

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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.)

 

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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.

Go, Diego, Go!

Posted by Nicole on November 17, 2010 at 11:00 PM Comments comments (0)

There are certain tradeoffs we get when raising disabled children versus typical ones. While it’s true we miss out on some of the bigger milestones (riding a two wheeler or learning to read), the smaller ones seem to be magnified especially for us. I don’t remember how old Owen was when he did his first 24 piece puzzle. I have no idea how old Alec was. (Though I’m guessing it was not long after Owen conquered his so he could keep up with that big brother.) But I know exactly how old Aiden was when he put his first puzzle together: 5 years and 6 days.

 

Some well-intentioned relative gave him a 30 piece cardboard Diego animal puzzle when he was about 2, and after smiling genuinely and thanking them profusely I tucked it away in the upstairs hall closet because my heart knew it was way too advanced for him. Funny, isn’t it? Even before an official diagnosis, a mom just knows when the time isn’t right.

 

Over the years his passion for Diego has grown, and whenever he’s stumbled upon that puzzle he’s dumped it on the floor and brought pieces to me to put together. His eyes would twinkle as Diego and Baby Jaguar took form, but beyond that he lost interest. He didn’t much care about finishing it or seeing the other animals – 1/8 was enough for him. At first I tried to let him help me, guiding his hand as we all do with our babies, turning the pieces and then clapping with delight as we found the “sweet spot” and made the piece fit. When I was feeling extra scientific I’d give him a piece oriented the right way and tell him it was “Diego’s head” (or whatever it was) and see if he could somehow manage to get it in. He could not. I would point to where it went and guide his hand ever so slightly, then let go. He would look up in confusion, turn the piece the wrong way, and try to shove it in place.

 

Last year (at age 4) he did, in fact, manage to put a couple of Diego’s body parts together with some serious help, but he was still uninterested in the rest of the puzzle. Frustrated, disappointed, and just plain sad, I packed it away with the family’s least-favorite games, hoping not to see the big yellow “Ages 2+” on the side of the box ever again.

 

You can probably guess what he found tonight. We started our old routine, me hand-picking the pieces and orienting them correctly so he had a shot at getting them together, and after a few minutes my scientific mind kicked in and I handed him one the wrong way. He turned it around and put in place. Thinking it must be a fluke, I did it again, and he did the same thing. Soon we had finished Diego and Baby Jaguar, the puzzle 1/8 complete, and I figured he’d bounce away having spied some shiny object in the distance. But he kept going. And going. And going.

 

I tried to explain to Andy how much progress this represented, but I don’t think he got it. “So… You show him where it goes and he puts it in?” was the response I got. “No! That’s just it, Andy! I didn’t show him – I only told him with words what part of the animal it was, and he figured the rest out!”

 

 

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(Thinking this is a horrible picture? You're right. Smooch smashed the display on our digital camera, so now we never know exactly what we're capturing. It's a big surprise when we upload the pics to the computer - like old fashioned photography! Minus the viewfinder. Sigh.)  

 

 

See? It’s like a special magnifying glass we’re given when God places this different child in our hands. He knows the child is special long before we do, and He knows we’re going to need a different set of glasses to view the world as we raise him. So yes, we’re still working on those damn elusive colors. And no, he hasn’t progressed past letter A and letter O. But gosh darn it, he just did a puzzle he’s been working on for 3 YEARS!! If that’s not worth celebrating, I don’t know what is.

When you feel the need to sweep...

Posted by Nicole on November 9, 2010 at 11:39 AM Comments comments (2)

I’m often surprised by things I shouldn’t be, knowing Aiden. He is such a creature of habit, clinging to familiar situations and phrases that have been repeated over and over because his mind is not exactly present all of the time, and often misses things if they’re stated just once. Yet his mannerisms are so odd they’re almost predictable – the random kick in the shins to Andy, the Iron Man laser blasting of Home Depot workers as he rides down the aisle in the cart, and the well-placed “Dirty Hoe” just when you thought he wasn’t listening.

 

I expect them, for the most part, but then he’ll do something that just solidifies all of the craziness that’s going on in that storm of a brain of his, and I remember he’s not dealing with the same deck of cards we are. His deck is more like 7 decks jumbled together, jokers and all, constantly in a state of shuffle, and you never know which card you’re going to see… though it’s often either the Joker or the Jack of Hearts.

 

We were taking a tour of another potential preschool the other day, and as the teacher called the group of kids over to her to work on the letter H, Aiden stayed in his free play corner. The other children were so excited to shout out words that begin with the “h” sound – “Horse!” “House!” “Hospital!” (Though I’m fairly certain whoever shouted that out is not nearly as familiar with the interiors of hospitals as Aiden is.)

 

The coordinator, Lexie, and I stood in the corner by the door watching 12 children gather around the teachers, making sure to clean up their toys as they went. Aiden, however, was not interested in group time, and continued making the same pot of coffee over and over as everyone else honed their alphabet skills, which was not a problem in and of itself. Untill he started sweeping. The wall. As in, with a broom. He proceeded to sweep the wall, up near his head, for the next 5 minutes.

 

I didn’t want to glance at the coordinator’s expression, though I’m sure it was something of a puzzled look – even mine was, and I expect things like this from him. He shows such promise, such common sense, such maturity at times…. And then you get a glimpse of those shuffling cards up there and the joker peeks out, and you realize how many impulses he must fight off just to appear relatively normal.

 

I love that he’ll make me coffee every time he sees a pot, even though I’ve never had a cup of coffee in my adult life. I love that he calls people dirty hoes and they have no idea what he’s said. And I love the effort he puts in to life – so much harder for him than for 95% of the children we encounter.

7 Stages: Check.

Posted by Nicole on October 29, 2010 at 11:03 PM Comments comments (0)

You could say I’ve always been in a rush. Not in everyday life, but in the big things. I don’t appreciate the 7 stages of grief, and would prefer to tackle them all in a matter of 5 minutes, thank you very much. I am one of the few who didn’t really enjoy college (aside from the learning, which was jaw-droppingly hard, inspiring, and grueling all at the same time) and rushed to finish a challenging degree in 3 years. Why? To marry Andy, of course! I graduated college at the ripe old age of 20, married Andy at 21, went to grad school, and had my first baby by 23.

 

“Nicole, what are you worried about? Of course you have an A,” was my high school history teacher’s dry response as he read our quarter grades aloud to the class. Silly him – I knew I had an A. It was just a matter of how much room I had underneath that A. I liked to rush things. You know, to get that grade as secure as possible as quickly as possible. Partly because I could, partly because I had this innate need to get things squared away fast, no matter how long it took others to do it.

 

Similarly, when we got Aiden’s diagnosis a couple of years ago, I thought I was on top of it. I knew it was coming, I had researched the outcomes, the treatments, and had wrapped my brain around it completely. Shortly thereafter, I met with another Dravet mom for coffee, and smiled politely as she explained how long the process of acceptance is. I do things much more efficiently, I thought silently. I’ve already accepted it and am working on the best treatment for him. Other people may need years to come to terms with something like this, but that’s silly. I can do it in just a few weeks.

 

More than 2 years later, I’m beginning to realize how naïve I was then. How the brain and the heart can be on two entirely different paths, experiencing the same moments but interpreting them so differently you'd think they were encased in two separate bodies. I wake up now, and Aiden’s condition is not the first thing I think about. I’ve been through denial, anger, bargaining, guilt, depression, and am only now coming to the acceptance and hope stage.

 

Funny – even the stages’ titles have different meanings now that I’ve lived through them: I always viewed the “hope” stage as “hope for a cure,” or “hope for improved outcome.” “Hope that your child will be one of the ‘lucky’ ones.” I always had that, so I figured I was way ahead of the game.  But you know what? It’s not as much about hope for a cure as it is about hope for his happiness. And the guilt? It’s not about feeling guilty that I caused this (which my job working with chemicals likely did), but about feeling guilty that I’m not doing enough for him. I think that’s why we dove into so much therapy for so long – just so I could avoid that guilt over not doing enough to ensure the best outcome.

 

A friend recently asked what I like most about Colorado. Honestly? It’s a fresh start. It’s like I’ve left the life that surrounded his first seizure and his diagnosis, and all of the sadness back in Minnesota, and we’re here now, together. All of us, experiencing life just as we expected to. We don’t run from appointment to appointment, he isn’t in school yet, and the therapies are not yet scheduled. It’s a beautiful life – Aiden and I spend the days as we should – as a mother and son, living their lives together, rather than as a caregiver and a patient, enjoying the mountain views and beautiful sunshine.

 

I miss my sister and our family. That part sucks. But there is such a peace that comes from enjoying life without the huge black rain cloud hanging over us (or the grey skies, as the case may be), and I can finally say I’ve reached the final stage. I’ve learned enough to know you can’t rush this one, no matter how good at speeding up life you may have been before this event knocked you to the ground, and to know I’ll likely slip back to the previous stages of grief. But when I’m there, next time I’ll recognize it and know enough to push forward to the next stage as quickly as possible. After all, what good is a project if you can’t rush it just a little bit ? ;)

Bobo the Horse

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

No words....

 

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Just happiness...

 

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And strength....

 

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 And Pride... 

For a job well done.

 

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Satisfaction from the Little Things

Posted by Nicole on October 9, 2010 at 11:26 PM Comments comments (1)

On a less-than-profound note, there are few experiences more devilishly satisfying than watching restaurant owners’ faces as they see Aiden approach the door with his dog. The panic-stricken wheels turn in their heads, following the same circle of logic at every restaurant we enter. First: “No pets allowed. I’ll need to tell them to leave the dog in the car. Get my stern face on.” Quickly followed by “Wait – that’s a service dog. But what on Earth is she doing? I think that boy can see and he’s not in a wheelchair. Am I being scammed?” Right about then practicality kicks in: “Shoot! What did I learn in elementary school about service dogs again?? They can go lots of places, but surely not a restaurant with health standards. Surely not MY restaurant!? What if the health inspector comes in and sees this? Then again, what about the ADA?”

 

They usually glance around, looking for a manager’s approval, before smiling tersely at us. If you listen closely you can hear the sound of their jaws clenching just inside those appled cheeks. They try, ever so discretely, to discern what she does from her cape, but the writing is a little small to read without really staring, and they are desperately trying to play it cool. It was especially twistedly satisfying tonight as Aiden walked through the Italian restaurant and cracked his head loudly against a chair during one of his drunken sailor “sways,” all the while trying to swipe empty (clean) wine glasses from the tables he passed.  Not exactly the clientele they're happy to see.  Andy claims it’s easier to just carry him through, and it probably is. For him. He’s getting a little big for me, though.  (Anyone have any ideas for demobilizing that free arm of his that's too far from me to control?  Heavy duty Velcro?  Or maybe a half-straight suit?  One arm holds Lexie's handle, but that other one.. Oh, that other one...)

 

The patrons are not the least bit concerned, however, and usually smile genuinely or say, “Wow, what a nice dog,” or something of the sort. I suppose that’s fair – it’s not like OSHA is going to be knocking on any of their doors if a complaint about animals in a restaurant comes in.

 

I admit it’s more than a little satisfying, partly because I know the outcome. (This was not always the case, by the way. I had my own little version of a panic-ridden drama play out in my head as we entered more than a few restaurants last year.) At the end of the meal when we get up and release Lexie from her spot under the table, the passing waiters (and usually the patrons as well) undoubtedly exclaim, “Oh my gosh, there was a dog under there the whole time? I had no idea!” or “I completely forgot about that! How well behaved she is.” And that is exactly the response you hope for, which means you’ve done your training/handling well and shown your respect for the establishment and the other customers at the same time.

 

So there you have it: One of the little things that makes me smile, albeit slightly twisted and a whole lotta' wrong. But secretly fun.  Maybe next time I should just carry a little picture like this one (from yesterday), so I can say, "THIS is what she does."  And be on my way.

 

 

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(Love her sweet paws)

 

 

**Not all hosts/hostesses are quite this concerned. Many are indeed genuine! It seems the more “Americanized” the restaurant is, the more welcome service dogs are. Some other cultures do not share our appreciation for dogs or our understanding of how they help the disabled.

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?)

 

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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.

 

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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.

 

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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.

 

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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.)

 

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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.

 

 

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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)