Aiden's Journey

One Little Boy's Battle with Dravet Syndrome

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The Lake

Posted by Nicole on June 21, 2011 at 12:44 AM Comments comments (1)

They’re all asleep – All 5 of them, curled up or sprawled out as the case may be for Owen. Aiden is snoring next to me, the calming green light tracking his heartbeat rising and falling on the bedside table while I type. Alec sleeps in the adjacent twin bed like an angel, two hands folded neatly under his cheek, and Owen, Lexie, and Scout are sharing the cushioned mat on the floor at our feet. We’re all in one bedroom at the lake, just the way I like it. I’d be lonely without my boys since Andy’s halfway across the country.


Somewhere between childhood and middle age the memories we recreate in our minds come full circle and we begin to see how those same experiences may have been lived, or even created by someone else in that time. Most visions I recall from 25+ years ago are really half-truths, physically cut off at what would be considered eye level for a small child. I can see the skirts of women working in the kitchen, the pockets of men taking fish off of hooks, and the little eaves under counters and couches we, as grown-ups, forget even exist. What I can only now see, 25+ years later, are how those visions were formed in the first place.


I see, now, that the matt covered in terry-cloth with blue and purple horses is actually quite small. My sister and I spent years sleeping on that matt, which was stored in the cabin’s sliding closet doors (also with a horse right at child-eye level). I hear my own children’s hushed voices drifting down the hallway that is not quite as long as I remember it being and realize, now, that the adults heard every word we thought was said in the utter and complete secrecy of a dark bedroom past bedtime.


I realize the preparation each meal required, though it seemed to appear out of nowhere just as we were running up the gravel pathway from the lake, changing out of our wet clothes in the nick of time. I see the afternoon tennis game on the television and understand, now, that Bapa needed that break from the chaos we grandchildren created, no matter how much he loved us.


Smooch pulled out a picture book for bed tonight, and written in awkward black crayon on a few pages were the emerging letters B-e-t-h. To think my older cousin, who colored in that book years ago, is now the mother of a high school graduate who has her own memories of growing up at this lake was a little mind-boggling.


Some things are remarkably different now (such as my being about to upload this post via the neighboring cabin’s unsecured Wifi, my slumbering special needs child still snoring next to me), life’s basics are exactly the same. As children we feel we’re the most important the world: As adults, we live to make children feel like they’re the most important thing in the world.

Flight Paths

Posted by Nicole on April 18, 2011 at 9:26 PM Comments comments (0)

ECFE (Early Childhood FAMILY Education), 9:30am 2006: 8 stay-at-home-moms, including me, are gathered together in a large circle in a small room, fluorescent light buzzing overhead, as we sip our coffees and hot chocolates, preparing for the day’s discussion. We have all spent 30 minutes playing with our 3 year olds in the next room, their siblings safely tucked away in “sib care,” and have left the 3 year olds with their classroom teacher while we take the next hour to educate ourselves about parenting, learning styles, and child development in general, facilitated by a “parent educator.” Aiden, 10 months old, was still 1 month from his first seizure, and I was naievely unaware of the change my life would take.

 

Most of us look forward to this blissful hour in the company of other adults who understand, knowing it may be the only hour of uninterrupted adult conversation we enjoy in the day. I stir my hot chocolate observing the moms around me, noting their clothes, their shoes, their expressions of alternating exhaustion and perkiness. Looking back, there was one mom who seemed just a little more tired than the rest of us, whose hair was just a little less perfect, and whose clothes were just a little more out of date than ours. (Note: We were all moms, so none of us was sporting the latest style, but still :)  )

 

I suppose I could have asked her what exactly had been going on with her son that made his struggle with potty training so much more difficult than the rest of our kids, or why he didn’t seem to care about making friends, but I didn’t. Of course I didn’t. And she didn’t offer, which probably just made me wonder if she knew he was different. I realize now she absolutely knew.

 

The topic of the day was “Your family’s flightpath,” and our parent educator walked us through the exercises of identifying the individuals our children were (point A), the individuals we hoped they’d become (point B), and deciding on our flight path to get from point A to point B. She stressed the importance of flexibility: How many times have our own flights diverted from the path only to end up at the promised destination, if perhaps a few minutes late, and we were none the wiser?

 

I knew what I wanted for my children: that they be respectful of others, that they love God, that they know right from wrong, and that they respect themselves. But how do we get from selfish toddlerhood to altruistic adulthood? 5 years later I’m still struggling with this one, though less deliberately and with less focus than before.

 

I know I can’t focus on superficial activities like sports or looks. I know I must be an example of respect in how I treat them (This is a hard one for me! I much prefer being “in charge.”;) I know I must teach them to love God and everyone around them. This is a lot harder to do, however, when 75% of my time is spent parenting or assisting their brother.

 

Maybe that’s one of the little surprise blessings we receive from having Smooch in our lives – maybe, just maybe, I’m not capable of the selfless love I wish for them, and perhaps he’s as much a part of our flight plan as the “unexpected” storm that pops up, necessitating a re-routing of the plane.

 

If I could go back in time I’d ask that mom what her flight plan was, and how she was dealing with the detours. I’d pick her brain about everything from dealing with the rest of us selfish, superficial, ungrateful moms with no cares in the world but potty training a typical child to how she kept her other 3 children on the intended flight path. Hindsight is 20/20 – I can’t fix what I missed out on back then, and I am certainly making a truckload of mistakes now, but I’m realizing more and more how lucky I am to have these 3 unique children who teach me more than I ever could have imagined.

Turtle Doves

Posted by Nicole on January 31, 2011 at 11:29 PM Comments comments (0)

So, I write a lot about how this roller coaster affects me, and how it affects Aiden. What I leave out sometimes (maybe because it’s not mine to discuss) is how it affects Andy. For those of you who don’t know our story, we’ve been together for a long time. A really long time. As in, since we were 14 years old, and not just “together” as friends, but “together-together,” dating through junior high, high school, and even college. By the time we got married we had celebrated anniversaries a lot of married couples don’t even make it to.

 

It’d be the understatement of the year to say we’re different people than we were back then, that we’ve “changed,” that we were immature and childish. We were the geeky couple everyone hated because it wasn’t quite as attractive to watch us kiss at our lockers each day as it was to watch the head cheerleader and her quarterback say "goodbye." We were insecure, we were unsure of ourselves without the other one, and we were a cliché. But ask me what I love about him and I won’t hesitate 2 seconds before telling you it’s his loyalty. It always has been.

 

When Aiden first started having seizures, we dealt with them very differently. I was the worry-wart, scared at every second he’d have “another one,” despite those long 2-3 month stretches of seizure freedom back then. The doctors assured us he’d grow out of them, and Andy was the ever-calm voice of reason, desperately trying to convince me to relax.

 

But then when he didn’t grow out of them, it hit Andy hard. Though he was the first to discover Dravet syndrome and the fact that Aiden’s history matched perfectly, he didn’t want to believe it could be true for a long time. He was the rock, I was the water. Together, needing each other even to form, but made of completely different materials.

 

Perhaps the most amazing part of this journey is how much it’s brought us together, like all of the struggles in life do eventually, if you’re patient enough. He won’t admit that he worries, or that my worries are valid, but where was he yesterday? He was up in the attic, hard-wiring Aiden’s newest security camera in over his bed, and running the cables to the monster-sized flat screen tv in our bedroom. This man, who originally not only laughed at but was genuinely annoyed by my insistence that we have a video camera on him years ago, was up there climbing around in fiberglass, poking holes in walls (and ceilings!), his least favorite activity, and he did it of his own accord. I didn’t even realize we needed a different solution: That is how in-tune with each other we’ve become over the past 18 years.

 

I wear a necklace with three words: “Meant,” “To,” and “Be,” one for each child. Maybe there should be a fourth, though, for Andy. At midnight last night, the new camera's inaugural run, I woke up to see Aiden’s eyes open, having large, silent jerks on the huge tv. He was in a long, scary, complex partial seizure, which I wouldn’t have seen on the little baby video monitor we’ve been using for so long. (For what it’s worth, those are sometimes the saddest ones to watch, because they are clearly aware of some of their surroundings, but can’t communicate. A single crocodile tear running down his cheek was the only way he could say, “Stay with me. I’m scared.”;) Then, at 5:59am I was able to quietly say, “Andy! Seizure!” as I laid next to him in bed, and Andy came rushing in with Diastat for a nasty tonic clonic.   (Where was Lexie?  Slumbering in our room.  What can I say?  She's one tuckered service dog, and we've been less than strict in enforcing the "sleep with Aiden" rule.)

 

He is a much more closed book about how this journey affects him. But he’s a fascinating “read,” when you get a glimpse of what’s going on inside that incredible mind of his.

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 ? ;)

Miss Independence

Posted by Nicole on June 22, 2010 at 5:50 PM Comments comments (0)

Some people might describe me as stubborn, but I much prefer fiercely independent.

 

Contrary to Mom and Dad’s belief, it wasn’t stubbornness that caused me to declare I was not going back to that sour-smelling preschool again when I was all of 3 years old and 36 inches tall. It was independence. I can do this by myself, I figured. I’ll watch Sesame Street in the morning, then Mister Rogers, and I’ll make myself a peanut butter sandwich for lunch so I don’ t have to eat their stinky macaroni and cheese again. Dad’ll be downstairs in his office if I need anything, but I won’t. I’ll be fine.

 

It wasn’t out of sheer stubbornness that we shut ourselves in our home during the evening hours for the first 13 long weeks of Owen’s colicky life. It wasn’t because we didn’t think anyone else could handle the non-stop screaming. (I do mean continuous. As in, no break between the gut-wrenching, then head pounding shreaks coming from something so small you could balance it on your shoulder with one hand as you bounced around the circular track of our downstairs.) It wasn’t because we thought we could do a better job than the rest of you. After all, you all had been through this before, and we were newbies. No, it was independence. We had signed up for this parenting gig at the tender age of 23, and we didn’t think it was fair to subject the rest of you to the scream fest. Despite there being no pre-parenting test, we were convinced there was a post-birth test. It was called colic.

 

And it isn’t stubbornness that has caused me to keep my boys close for the past 8 ½ years. I don’t think I can do any better than anyone else – I just don’t want to burden others with the three little creatures Andy and I planned and asked for. After all, shouldn’t we be able to take care of what we coveted so much? So no: I don’t carpool much. And no: I haven’t used babysitters up until now. (Do Grandmas count?) And no: I haven’t hired that cleaning lady for which we were approved.

 

But Smooch changes me in ways some people have been trying unsuccessfully for years. (Mom? Dad? Did you think it was possible?) As hard as it is for me to admit, the help is welcome. When I signed Alec and Owen up in March for basketball camp this week, it appears the reality of Alec’s 8am start time didn’t quite sink in. Why did I think this would go well when Smooch often sleeps until 8:45 and has small seizures all day if I wake him up earlier? No problem, I thought. I can do this. I’ll have Alec there at 8, then go get him at 9 as I drop off Owen, and be back to get him at 10:30.

 

Luckily for me, there are little angels running around out there disguised as mothers who’ve been where I am and are just as stubborn  independent as I am.  It’s hard to argue with them. Some haven’t had little ones since… well, since I was little, and others had little ones just a few years ago but clearly remember what it’s like. I felt a tiny pang of sadness (or was it loneliness?) as I waved to Alec when he climbed into one of these angels’ mini vans and buckled himself in at 7:40am, Smooch slumbering fitfully upstairs. But you know what? It passed. It passed so fast I could almost feel it leaving me, and I am much lighter without it.

 

So to all who’ve helped make this summer so much smoother than last summer despite Aiden’s continuing seizures, THANK YOU. I did this on my own last summer, but I shouldn’t have. Independence isn’t all it’s cracked up to be, apparently. I’ve already had more fun with these boys this summer than I did the entire 3 months last year, and it’s all because people have been there to help. You know who you are, and I do too! Thank you.

Memphis Belle

Posted by Nicole on June 9, 2010 at 10:34 PM Comments comments (2)

Little girls love horses. They go together like summertime and popsicles. I, like every other girl in America, wished for a horse for each birthday, Christmas, etc. until I was… 22. I’m not kidding. And I only stopped then because I finally purchased my first and only horse. My sister, Lisa, had had one for a few years and I loved hers, but a girl and her OWN horse… You just wouldn’t understand.

 

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Memphis Belle (Belle for short) was aptly named. She was ½ Arabian (read: spirited) and ½ quarter horse (read: fast ¼ mile sprinter), and never has a horse taken her breeding so literally. She had the speed of an airplane and the decision making skills of a pilot flying solo. Example: She put up with my sister’s and my antics for a while: a ride down the road, in the arena, or a walk in the woods. But come time to head for home, she would turn 180 degrees and gallop so quickly I fell off nearly every time. (I really do mean gallop. For those horse lovers, there’s a big difference between an all out gallop and a controlled canter. She did the former. Every. Single. Time.) She was a barrel racer before Lisa and I decided we’d turn her into a dignified English jumper, and she could turn on a dime. Me? Not so much. (Oh, but when I did! I can still feel the wind on my cheeks and the rush of adrenaline.) I think she trained me more than I trained her. She’d run for a block or so as I watched from my duff, then turn around and look at me as if to say, “Well, come ON! Are you coming or not?” She always came back to get me, but by then we both knew exactly who was in charge.

 

She had a mind of her own, and my riding sessions got fewer and farther between with each successive birth of my children. I knew I wouldn’t put my kids on her to learn to ride, so when Lisa sold her farm, it was time for me to sell Belle. I always thought I’d get another one when the boys were old enough to help with the hobby farm Andy and I would eventually purchase, but life throws us curveballs every now and then, doesn’t it?

 

I don’t know if Aiden could see my face light up (and then fall) when he exclaimed from the back seat of the car last summer, “Me wyy ose” as we drove in the country to visit our parents. Considering he had zero vocabulary skills at that time, this was a major feat. He actually wanted something, searched for the right words, put them together in a sentence, and conveyed it at a time when we would have some idea of what he was saying. This in and of itself was a major accomplishment! I told him I’d get him up on a horse, even if it was just a pony ride at some county fair with me walking next to him. After all, the “history of seizures” box is pretty much the nail in the coffin when it comes to people letting children ride their horse…

 

Fast forward 9 months:

 

 

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We Can Ride is a nonprofit organization that helps disabled children get the physical therapy they’re likely doing anyway by doing the PT work on horses. It focuses on balance, core strength, and speech. Since those are Smoochie Bear’s 3 top needs, it’s like we hit the trifecta.

 

He had so much fun on his first day. I haven’t seen him smile consistently for that long in years. I never thought he’d be able to ride a horse, but thanks to the amazing volunteers surrounding him, there he was on top of the first love of my life: a horse. He has asked to “wyy ose” every single day since then, and I can’t wait until Tuesday when I can finally answer, “Yes, Sweetheart. Today you can ride your horse.”

Father's Intuition

Posted by Nicole on May 3, 2010 at 10:24 AM Comments comments (0)

We are all given gifts and talents to use during our lives, and I am certainly no exception. However, God seems to have skipped right over me when he was doling out “nighttime mother’s intuition.” I have never been the mom who wakes up before her baby cries at night or tiptoes in to check on them just because she couldn’t sleep and was thinking about them. Nope. I sleep as hard as a rock. Sort of like a man, I suppose.

 

In the days of nighttime feedings Andy was actually the one who’d wake ME up – “Hon, can’t you hear that? He’s hungry!” I try to be in tune with them at night – really, I do. But sleep is just so darn elusive and fleeting, and I’m apparently not wired that way. It’s a little embarrassing.

 

Thank Heaven Andy walked into my life. It turns out he IS wired that way, and is a much lighter sleeper than I am. So it really wasn’t surprising to us when, early on Friday morning, he was the one running toward Aiden’s room after hearing the tell-tale gurgling over the freight-train-loud video monitor of Aiden seizing in his bed. Me? I was sleeping like a baby. I stumbled into the room to hear Andy yelling for rescue meds, which I retrieved. (Lexie, by the way, was also sound asleep on the floor of our room. And I was too sleepy to remember to have HER fetch the meds. Rats.) It’s funny – when we're awake, the roles are reversed. But tempt me with sleep and I become the barely functional “what on earth is going on” nimrod. (Now, I DID wake up to the pulse oximeter alarming for high heart rate as Andy was running into the room, but he even beat the alarm. How impressive is that?)

 

Once the immediate crisis was over, Andy left but I felt the need to stay with him. Like I said – when we’re awake, the roles are reversed. And he seized again 20 minutes later: A big bad blue non-breathing one. This time we got an alarm for high heart rate AND low oxygen – down under 60% saturated. It’s like a double jackpot.

 

I guess the point of this story is this: There are so many little things that come together to make each day possible. It’s true: I’m not blessed with mother’s intuition at night. But God must have known this when He paired me with a husband who is more in tune with his children at night than most. And just in case, He gave me the intuition to push the neurologist for the pulse oximeter, which often isn’t needed, but becomes a lifesaver on random nights we can’t predict.

 

We’re lucky in that respect – most people don’t get black and white glimpses of how intricate the mere act of staying alive is, and we do. And He only gives us what we can handle. Or, more accurately, He only gives us what we and the team He’s placed around us can handle.   And Andy's totally on it.

"There'll be days like this."

Posted by Nicole on March 8, 2010 at 11:00 AM Comments comments (1)

It was late August. The ground was hard from a dry, warm summer, and the air was warm and still. Though most of the leaves were awash in their full green summer hues, three of the early droppers in our backyard had started to turn the slightest shade of yellow as they prepared for the fall. Every 5 minutes or so a katydid would buzz, reminding us that it was still summer. I was just thinking about gathering my ducklings in to make dinner when the phone rang.

 

The boys and I were outside on the swingset and had been there about 4 times that day. Unexplainable to us, Aiden seemed to be okay outside for a few minutes in his rainman-looking blue swim goggles with the polarized lenses held over the front with clear rubber bands, as long as he was sitting down. So I would carry him out to the swing, set him down, and push him constantly, soaking up whatever sunshine and warmth I could before he started to lose control. Owen and Alec would swing, play in the sandbox, climb the tree, and play chase, but Aiden was content just to sit in the swing, knowing that anything else made him feel sick.

 

It had been a long summer of hard lessons learned. It was the first time we had really dealt with his photosensitivity, and the medication he was on (pre-diagnosis) made his seizures far more frequent than they should have been. He seized everywhere we went, and we got used to it. Thankfully, they were short and rarely required rescue meds or hospitalization. After he’d seize, we were actually left with a window of post-ictal sleep in which I could play with the other boys in the sunshine at the beach, or at the pool, park, or wherever we happened to be while he slept it off on a blanket under an umbrella.

 

Still, we knew something wasn’t right. This wasn’t how epilepsy was supposed to be – if he were going to grow out of it, it should be getting better as he grew, not worse. He had been through a battery of tests down at the Mayo Clinic throughout the summer, including a spinal tap to test for the feared neuronal ceroid lipofuscinosis family of diseases. Every test had come back negative, and the doctor ordered a genetic test as her “last ditch” attempt to figure out what was going on. Given the idiopathic nature of his seizures thus far, we considered the testing a bust and had closed the book on it. Our neurologist had warned us we’d probably never find an answer, and we agreed.

 

I remember it vividly. We were at the swingset, and the phone rang. I picked up the cordless, and Andy was there on the line. His voice was a little shaky, and he was angry that I hadn’t been available (I’d been on the other line talking to my sister, and we don’t believe in call waiting.) He stopped and said, “Dr. Renaud just called me. Aiden has a mutation that may be causing his seizures.” There was a long silence. “That’s good news, right?” I asked, certain we had ruled out all of the incurable, fatal diseases in previous testing.

 

“That’s exactly what I asked her, and she didn’t seem exactly joyful or pleased. She says if this is the cause, there is only one medication known to help treat it.” I was still hopeful. One medication! That was a start. “And it’s not available in the USA.” Then, “We need to undergo genetic testing to make sure we don’t have the mutation so we can know this is causing his seizures.”

 

When Andy got home a few minutes later he came directly out to the backyard, and we ran to each other and hugged, tears rolling down both of our cheeks. Neither of us knew why we were crying. Was it relief to perhaps have an answer? Or fear that the answer was one for which we weren’t prepared? Or just the damn of emotions kept inside for so long as we tried to manage each successive blow this disease had already dealt us, finally breaking as someone else took the wheel? When you’re battling a monster, sometimes it’s scarier to flail around in the dark, not even knowing if the things you’re chasing and hitting are part of the monster or just a tree next to it. When the lightning strikes and illuminates the monster’s shape, there’s almost a sense of relief, and you feel like you can form a plan of attack, knowing at least what you’re up against.

 

Not that we did know, yet. We just hoped we might be moving in the right direction. They say you always remember the day the doctor gives you a life-changing diagnosis. And I do remember that day, too, many months later. But the one I remember most is the day the doctor gave us the first tangible answer, a cause for the horrible seizures that were plaguing my littlest baby. That was the day Andy and I changed from passive parents, trusting everything doctors told us (“It’ll get better.” “He’ll outgrow these.” “The medication isn’t making it worse – it’s just his natural progression.” “He’s on the best medicine for photosensitivity anyways.”;) and became active team members in his care.

 

It’s true: doctors treat patients the way the majority should be treated. Rightly so! Our neurologist then had correctly told 99% of his patients they’d outgrow their juvenile seizures. But sometimes you’re not lucky enough to be in that majority, and it’s up to you to know when that is. I remember that day for the change it made in me, and the illumination of our resident beast. It was also the day I lost hope he’d outgrow his seizures.

 

Our hope is different now, but no weaker. If anything, it’s stronger and more meaningful. We hope he’ll be happy. We hope he’ll have friends. We hope his seizures will be infrequent and won’t affect his daily life much. We hope he’ll learn new things and will one day be able to run, jump, and play without feeling sick. We hope he’ll live a long, happy life. We hope we’ll be able to enjoy him and remember not to take anything for granted. We hope he’ll love life as much as we all love him.

Babies, Babies, Babies

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

You know those moms who have their 3 or 4 babies, then have another, and another, and another, and you question their sanity with each successive pregnancy? Not the certifiable ones like Octomom or the Duggars, but the ones who push the socially acceptable limit of 3-4 - I think I could have been one of them. I love everything baby. I loved being pregnant, I love seeing pregnant women, I love the curled toes and fingers, and I love toting little creatures around knowing I’m their best friend in the world.

 

At the same time, I am definitely not one of the wistful “nursing is the greatest thing in the world” moms. I did it for the required year or so for each of them, but I was always glad to be done. It probably sounds crazy since everyone else seems to see that as the best bonding experience, but it just wasn’t my cup of tea. I always felt like I wasn’t giving them enough to eat, or that I wasn’t doing it right, and I HATED pumping. (That’s a strong word, and I’m fully prepared to use it. The person who invented that thing and I have a score to settle. There were more than a few tears the day I spilled some of the precious liquid gold down the drain while preparing Owen’s daycare bottles .)

 

Notwithstanding, each of my creatures developed their own feeding style. Owen’s colicky scream fests rendered our nursing sessions stand-up/ bounce-and-skip contortion acts, while Alec was my marathon nurser, snacking for hours at a time as Owen squeezed onto my lap for some serious reading time. Aiden, as usual, had a different style. He was always pretty relaxed and contented: He did this thing where he’d stop momentarily, move his eyes from side to side as if checking to see if anyone was watching, then close them and go back to eating. He stopped breathing while he did this, too, like he was trying to listen for something. As he closed his eyes again they would roll up in this satisfied way as if to say, “Good.. No one caught me… I’m still incognito.”

 

“Why now?” you ask. “Why mention this now?” Because I’m Mom, and I forget things. That’s what Owen and Alec say when I inevitably forget to send them somewhere with some key item. Or when I forget to send them somewhere at all. (Alec, I’m sorry about that missed birthday party!) Smooch was snuggled in my arms like a baby the other day, his legs reaching all the way around past my back, drinking his sippy cup of milk. And he stopped, moved his eyes from side to side, breathless, as if he were listening for something, then rolled them up slightly and closed them. Perfectly content. Like Andy said so well: This is one of those things parents of typical children don’t get anymore. Who else would be cradling a 4 year old as he drank from a sippy cup, reminded of the baby he still is?

 

I’m secretly grateful that God gave me this eternal baby to care for. I think He knew I’d always long for another despite my rational mind saying 3 was enough, and placed this gentle baby/toddler in my arms to take care of any yearnings. I see the other kids his age becoming independent, caring about what other kids think, learning the social ways of the world, and then I look at Aiden and my heart warms because he wraps his arms around my neck, presses his soft lips to mine, and I know he’s still more like a giant 3 1/2 foot tall baby, my eternal pal.

 

The purity, the innocence, the complete openness of his feelings – How lucky am I that these are just getting stronger as he grows, rather than shifting into the hidden depths of a child’s mind? I love it.

Tired, 8 years later

Posted by Nicole on December 30, 2009 at 12:06 AM Comments comments (1)

Here’s another one to file away in the “I used to…” file: I used to think I was tired. I used to think having a baby was just one of those phases in life during which you didn’t get much sleep. And I liked it! (Well, a good chunk of the time, anyway, especially when I was working full time and those nighttime nursing sessions were the best quality time I had with my baby.) I remember one night shortly after Owen was born, nursing him at about 2:00am after he had finally stopped his 4 hour screaming fest known as colic. We were living in a house off the freeway, and on nights like this when it snowed, the lights from the freeway and truckstops created this calming orangish glow, and the constant hum of the freeway usually audible through the walls was silenced by the falling snow. Or maybe it just seemed silent after the incessant screaming… Either way, I can still picture the silence and the distant “SA” sign through the snowflakes.

 

                        (They are always so angelic when they're asleep, and always

                                           manage to catch up on it during the day!)

 

I was nursing him and exhausted, my eyes stinging with tiredness, but remember thinking, “This is what mothers are talking about when they get all starry eyed explaining ‘those sleepless nights,’” and being awestruck by the beauty and serenity. Of course, not all sleepless nights were this magical (ha!), but when you’re raising healthy babies you hold on to the knowledge that it will not be like this forever. Sometimes you hold on to that knowledge with a death grip, as if it is promised to you.

 

You trudge through the weeks, the months, then the years as Toddler#1 begins to sleep through the night and Baby #2 takes his place as your hourly alarm clock. Baby #2 soon turns to Baby #3, and before you know it you can count the number of nights in the past 5 years you’ve slept for more than 4 hours at a stretch on one hand. You are tired. You think of your friends or family with older children and imagine them going to bed at a reasonable hour without the little one somehow attached, and then waking up in the morning. In the same bed.

 

But even as the promised weeks turn to years, you are comforted by the assurances you receive that “it gets better,” and that 10 year olds can’t possibly wake up so much during the night, so despite being tired, you know it’s just a phase.

 

Then there’s Smooch. Being tired with the promise that it gets better is one thing. Being tired after 8 years of this with the knowledge that in all likelihood it will not get better is quite another. His medicine messes up his sleep cycle and internal clock so much that we can’t even fault him too much for his waking. Sometimes we do our best to encourage him to “self settle” and promote healthy sleep habits. (I feel like I’m stealing the title of one of the dozens of “Get your baby to sleep” books I’ve read over the years.) Other times we do anything we can just to get an extra hour of sleep.

 

Then, if it’s not medicine, it’s nocturnal seizures, or apnea, or false pulse oximeter alarms. Or, my favorites, the nights we set the alarm for every 2 hours so we can alternate dosing him with Tylenol and Ibuprofen to keep the impending fever at bay to prevent a status seizure. But we’re so fearful of the seizures that come with illness that we wake up to check on him every 15 minutes and end up turning that alarm off and resetting it for the next dosing before it even has a chance to go off.

 

Nothing out of the ordinary is going on right now – I’m just tired, and that’s okay. I used to think I was tired, but once again: I had no idea there were so many versions of “tired” or “normal” or “lucky” or “supposed to’s.” Smooch comes with so many blessings, and brings us so much joy, and don’t get me wrong: I wouldn’t trade the musical beds or sleepless nights for anything. But he continues to redefine me, continues to redefine what I’m capable of, and continues to redefine what I thought I knew about what is “supposed” to happen in life. There are no guarantees. There is nothing we are promised or entitled to. Not a full night of sleep, health, wealth, or even another day on this earth. We deserve nothing and are given everything. Even my tired mind appreciates that!

"Well-Child" Visits

Posted by Nicole on November 22, 2009 at 10:12 PM Comments comments (0)

It seems like forever ago. I used to plan for them far ahead – made sure I had extra diapers for after the weigh in, toys for the wait, Tylenol for the shots, etc. I mean “well-child” appointments, of course. The one time when the doctor was there to make sure nothing was wrong, compliment you on your beautiful baby/toddler/smart preschooler, chart his growth, etc. When we got there I would spend a few minutes filling out the developmental checklist, which was really just a sheet of paper reinforcing how advanced my children were. I mean really, What 12 month old can’t roll over, for Heaven’s sake? Are there honestly 4 year olds who can’t feed themselves with a fork? Who WERE these children that made average seem so far behind my genius children?

 

Ahh, how the tables turn. For a while it wasn’t so bad at Aiden’s “well child” appointments. (I realize now what an ironic statement that can be. The doctors must have figured it out, too, because I notice they call them “preventive medicine visits” now. There should have been a memo on that one.) He missed a few milestones here and there, but nothing too worrisome. We knew his speech was behind, but he had two older brothers talking for him – why bother speaking himself?

 

So I got to Aiden’s 4 year appointment on Friday morning and started filling out the developmental checklist. The receptionist is kind enough to highlight the appropriate age to start at based on your child’s age (and she graciously starts about 6 months behind just in case you have one of the… late bloomers). She draws a neat yellow arrow up to indicate you should check off all boxes for things your child can do, moving on to the next age as appropriate. Owen and Alec always measured at least a year ahead of those so-called averages.

 

I started at the yellow line: 4 years. I did not check off one box. “Okay,” I told myself, ”No problem. We knew he had a tough year and is developmentally delayed.” I moved below the yellow line: 3 yrs, 6 months. No boxes. “That can’t be. Are 3 ½ year olds really supposed to be able to dress themselves with help?” I moved to 3 yrs. No boxes. And down to 2 ½ yrs. Here I was able to check one box (One! Out of 7!) It was for pedaling a tricycle.

 

At this point I figured they must have changed the paperwork since I had been there last. The things they were expecting 2 ½ year olds to do seemed ridiculously advanced. Surely my older children couldn’t stand on one foot for 2 seconds at age 2 ½. Could they? Or draw an “L?” I’m certain they learned that in kindergarten. I can’t quite remember when they learned to button buttons, or put their own socks on, but it seems like it was yesterday. And I definitely don’t remember showing them how to do it more than once. Where have those little creatures gone?

 

In addition to the checklist was a questionnaire. “What are your child’s strengths” (Answer: Affection.) “What are his/her weaknesses?” (Answer: Sour Patch Kids and mmm-gulp. (See “Dad’s Take.”;) “How are you doing as a parent?” (Answer: Very well today, thank you!) The nurse laughed at my comments. What else can you do? We spent the next hour with the pediatrician explaining his complicated year and why he can’t find the black market imported meds Aiden’s on in his computer. As in, they’re not there. Period.

 

I’m not sure why I was surprised by the visit. I know he functions at an 18 month to 2 ½ year old level. But seeing it on paper was tough – as if he was being graded on his skills. I can only imagine how parents with more severely delayed children feel. And now I completely understand why the average always seemed so low for Owen and Alec. It is just that: an average, and I have 3 exceptional children. They just happen to be on different ends of the spectrum. How blessed am I that I get to experience both sides? Perspective is an amazing gift. I have been blessed!

Horses, balance beams, and klutziness

Posted by Nicole on November 4, 2009 at 4:39 PM Comments comments (0)

16 years ago I fell off the balance beam. It was a stupid thing to do. It turns out you can fall off in either direction: forward OR backwards, and sometimes trying to stay on the beam does more harm than good. Had I just accepted that the trick was not salvageable, jumped off and tried again, I would not have this darn scar on my elbow.

 

Who would have known that just 16 years later I’d find myself on that same 4 inch plank with a dangerous fall on either side? It’s always little things that throw my balance off. Like when I drop Aiden off at school (“drop” may not be the right verb considering I stay outside in the hallway the entire time) and the group is working on their letters. The teacher has a big puzzle with a school bus next to the letters “b,” “u,” and “s.” You can see where this is going, right? I wobble for a minute as Aiden stares blankly around at the other children, who are excited and yelling out the letters as she asks for them. But the class moves on, and so do I. Crisis averted. I am still on the beam.

 

But it can go the other direction too. I can focus on the positives and trying to maintain that slim slice of normalcy we have so much that when they disappear I am left with no balance beam to stand on at all, and fall straight to the floor. 14 months ago I called my sister, ecstatic. “He’s doing it! He can do these things! He just needed more help and prodding! But he’s doing it – he’s using the bathroom!” It was the latest I had ever potty trained a child, but gosh darn it, he wasn’t 3 yet, so we were still in the average range. We were still on that 4 inch path that typical children take, and we were going to fight to stay on it.

 

The months wore on, the accidents were daily, I was drowning in dirty laundry, and rather than improve, he seemed to get worse. I made myself miserable trying to keep him trained. (What does that mean, anyway? I was certainly trained to take him to the bathroom every 30 minutes. But Aiden? He couldn’t have cared less.) We tried everything from Pull Ups (Aren’t they just diapers? Aiden certainly thinks so.) to vinyl covers that may have saved us the embarrassment of his accidents, but were no walk in the park to clean. Try stuffing those babies into the Ziploc baggie you keep in your purse for just such an occasion and then wondering if anyone else notices your purse doesn’t smell quite right. After a long seizure and hospital stay in May, he was back in diapers and I was, well… relieved! I haven’t looked back.

 

But that fight to stay on the balance beam did more harm than good to my psyche. If he hadn’t ever been 85% potty trained, this wouldn’t have counted as regression, the dreaded word in Dravet Syndrome. I fell off that beam, smack on my head when I realized that was the definition of regression. If I hadn’t been so ecstatic and proud that he could do this, it wouldn’t have hurt so badly when I realized he just couldn’t. Sometimes I fight to keep MY balance when what I should be doing is helping Aiden keep his balance instead. And diapers do not throw him off in the least.

 

So we try to maintain balance between optimistic hope and realistic expectations, but then again.. What was so wrong with the low beam? You know – the practice one that’s only 5 inches off the ground. You can still perform the most beautiful tricks on the low beam. It’s just not as flashy. It’s where we are now, and I think I’m okay with that.

The fall from a high horse is hard

Posted by Nicole on November 2, 2009 at 8:10 PM Comments comments (1)

I admit it. I was one of those moms. I thought I knew a lot when it came to raising babies and toddlers. I was the mother duck, with her three little ducklings waddling behind her. And as proof, I had two of the most well behaved children I’ve ever met. That must mean it was all because of my parenting, right? When other parents talked of tantrums and rottenness, I thought I had the answers for them. And I prided myself on only letting Owen and Alec watch 2 cartoons per day (PBS, nonetheless!) Friday was “movie day,” which meant I got a little break during the afternoon when they would watch one movie (one! Per week!). And all the time we had leftover because we weren’t watching tv was spent using dump trucks to teach Owen his letters, how to read, etc. (Sorry, Alec – you were along for the ride. Luckily you’re a smart guy and picked it up despite my not teaching you as well.)

 

I kept this up for years, believing they never asked for toys in Target because they didn’t see commercials. The view is quite different from a horse, and a high one makes you look pretty tall.  But the fall is hard.

 

Now? I’m one of those “other” moms. Aiden watches.. I’m not sure I can put this in writing.. 3-6 hours of tv per day. PER DAY!  What would the former me say about this? And he’s the only one home with me during the day. How’s that for embarrassing? But, we adapt.  Slowly he’s developed seizures when doing just about anything else. Plopped on the couch with his sippy cup in front of the tv is the safest place for him.  And yes, it took me a long time to be okay with this.

 

He even has his own section on the DVR filled with hours and hours of Dora and Go Diego Go! In fact, he’s watching the Orangutan episode right now. It might be his 5th today. The good news is that it only takes 3-4 times of him watching the same episode to be able to answer the questions at the end correctly.  This really impresses guests when he gets them right. “Does a penguin swim, or drive a boat?” “Wii” (That would be “swim” in Aiden speak, and this correct answer particularly impressed Grandma the other day. I think he’s seen that episode 10 times.)

 

“Why not play with him?” you may ask. Well, we were doing just that about 15 minutes ago. But the excitement of playing with both brothers and Mom was too much, and he started jerking and having eye flutters. I’ve already given him all the medicines I possibly can today, so it’s off to the couch for some calming tv.

 

Aiden continues to redefine life for us. How can a little 4 year old teach me so much when I thought I already knew everything? He has completely humbled me. It turns out there are a lot of things I used to worry about that just don’t matter. There are a lot of things I thought were important, and are not. It doesn’t matter what you did or did not eat during pregnancy. It doesn’t matter how you birthed your child. It doesn’t matter what your parenting style is. It doesn’t matter how much tv your children watch or whether you use time outs. If they are loved, fed, safe, and their spirit is nourished, they will grow alongside of you in the most surprising ways.

 

There are so many things I used to take for granted, and don’t (or try not to!) anymore. Amazing. A little man who can’t talk is the best teacher of grace, humility, and perseverance I have ever met in the flesh.