Aiden's Journey

One Little Boy's Battle with Dravet Syndrome

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The Loch-Ness Monster

Posted by Nicole on March 29, 2010 at 10:33 AM Comments comments (0)

You know the moms you see out there whose kids are all dressed well, with clean shoes, brushed teeth, and no snot or peanut butter on their sleeves? Whose kids are enrolled in the best classes (that always fill up quickly, so you know the mom was Johnny on the spot in registering them) and have their summer programs set already? The moms whose hair is blow dried at 8am and whose houses are always clean because everything has its place and they don’t go to bed with a messy house? Whose floors are mopped once a week and showers are cleaned on Thursdays? The ones who remember teachers’ birthdays, friends’ birthdays, and send some sort of note or flower for each? I’ve decided they don’t exist.

 

I think they’re like the Loch-Ness monster. Everyone has a story of a sighting, and we all see glimpses of a piece of them (the well-dressed kids or the put together mother), but never the whole monster at once. Do you know why we never see the whole thing? Because THEY ARE NOT REAL! They are a figment of our imagination, a being we’ve created by gluing together parts we’ve seen on several different monsters – er – moms, never all at the same time.

 

I can dress my children well one day. I can blow dry my hair one day. I can even marvel at my own thoughtfulness as I make dinner for a troubled friend one day. And believe it or not, I cleaned my shower last week. (See? I had to wait to write this until I could say that. Let’s just say it’s been a long time in the making.) I even wiped the chocolate milk off Skinny’s lips before school this morning. The likelihood of these things happening on the same day, however, is about 3%.

 

We just can’t let the idea of Nessy go, though. We strive for it. We feel bad when we swing and miss. We justify it: “If only ____, then I could be like that too.” “If I had a cleaning lady,” or “If I had more money,” or, “If I had a nanny to help like she does.” The special needs families have their own built in excuse: “If I had typical kids, like I planned, like ____ does.”

 

I have been patting myself on the back for being on top of the boys’ papers lately. I’ve been jumping through hoops and cutting red tape to get the ball rolling on resources for Aiden, and I’ve been feeling like Super Mom. But, true to form, I dropped the ball this week. Or more accurately, I dropped the ball this month. Repeatedly. It’s not like I didn’t have time – I just forgot to do something over and over. There’s no excuse for it, and I feel really bad about it. I’m not about to blame it on being busy or overwhelmed or striving to be Nessy. In my selfishness, I just plain forgot. It turns out I needed that humbling experience to remind me I’m not as on the ball as I thought I was.

 

It’s good for us to want to do our best, but it’s easy to fall into a trap of entitlement. And striving to be like Nessy is a surefire way to head down that road. We are not given any less than we deserve, and if our kids see us constantly dissatisfied with our lot in life, what lesson do they take away but that they are entitled to more than they have? As a recent speaker said, “How lucky are we that we get to choose what to wear and what to eat today when so many people have but one option for both?”

 

I am not Nessy, and neither is the mom you think may be. None of us is. She doesn’t exist, and even if we had that one piece we think would make it all better, a hole would open up somewhere else. Striving to do our best is great! Striving to be perfect is not, and being ungrateful for how unbelievably much we have in life isn’t, either. The next time I’m wishing for something, I will stop and give thanks for all of the blessings I’ve been given.  Wait - I'm not perfect, so let me rephrase that:  I will try to stay out of the entitlement trap!

Ironic, but mine

Posted by Nicole on March 23, 2010 at 10:16 AM Comments comments (1)

I appreciate the irony of our lives, I really do. How can I not chuckle when we escape to a hotel for a solid night’s sleep for the first time since we can remember, and Smooch chooses that night to sleep through for Grandma? And I smirk behind my older son’s head (who shall remain nameless) as he kicks, screams, and claws at me while getting blood drawn and Aiden says calmly to him, “O-gee, Ack. Hee? Wa bobo!” (“It’s okay, ___. See? Just watch the bubbles in the collection tube!”;).

 

The fact that we have a stationary bicycle – no, I apologize, it’s a snowmobile – in the middle of our family room doesn’t even phase me. (For the record, I did pledge to keep the family room toy-free a few years ago after I decided I’d had enough and relegated the toys to bins in the laundry room. But it turns out when kids don’t have toys immediately at their disposal, they either: a. whine incessantly for attention or b. play with our things – remote controls, cords to the blinds, power cords, etc. Both options are entirely unacceptable. Who knew? Chalk that one up to Parenting 101, failed.)

 

The rare sleeping-Smooch

 

 

Indeed, what could be more ironic than the time we spend putting Aiden to bed (2-3 hours lately), only to have him wake up throughout the night in even smaller chunks of slumber than the one we sank into getting him to sleep? On second thought, the word “futile” may be more appropriate. But who wants to label their life “futile?” I’m sticking with ironic, thank you very much.

 

The meds we force down his throat each day (I’m not exaggerating when I say force) with the promise that “This’ll make you feel better,” while not exactly ironic, seem a bit contradictory. I’m sure he’s thinking No, this does NOT make me feel better at all. Does it LOOK like I feel better?. And the latest in our string of irony: We’re forging ahead with physical therapy even though movement causes seizures because physical exertion and lack of endurance also cause seizures. It’s just like light exposure: It causes seizures, but if we keep him locked in the basement with no light exposure at all his eyes could become so unaccustomed to it that he’d seize upon returning to the smallest bit of light, like the people you hear of whose eyes have been permanently damaged from years of dimly lit prisons or caves. Damned if we do, damned if we don’t.

 

I can’t help but laugh at our life. I have no idea what I’m doing, and sometimes there’s no choice but to give in to the irony (you can call it futility if you like) and push that stone up the hill even though I know it’ll roll right back down. Ironic? Maybe. Mine? You had better believe it.

Words

Posted by Nicole on March 17, 2010 at 10:25 PM Comments comments (0)

Sometimes the sweetest words are those left unspoken. The ones that pass through the air with a look, a touch, or an emotion shared between you and someone across the room. Other times, they’re the words you’ve longed to hear for years, elusive for one reason or another, finally uttered at what will remain the perfect moment in time. And still other times they’re bittersweet, a window to a world you thought might exist but about which, up to that point, you could remain blissfully unaware.

 

It’s no secret that Aiden’s speech leaves a lot to be desired. He communicates pretty effectively with me and his brothers, but the scrunched up forehead and wrinkled nose of extreme frustration inevitably appear as he tries to tell random strangers about something he’s done or seen. “What, honey?” is the response he gets from cashiers and front office people who ask him what his name is, or what he has in his hands.

 

I’ve always wondered what a seizure feels like, and even though I know what the answer will be (or more accurately, will not be), sometimes I can’t help but ask him.

 

When we first discovered his photosensitivity, we had to put words to the feelings for him. “Aiden, you have to wear your goggles because outside makes you feel sick.” Or “Aiden, you can’t play anymore because you’re getting sick.” I didn’t know how else to communicate what he must be feeling with him, to validate his experiences and differentiate them from the healthy, normal feelings he should be having and more importantly, seeking.

 

It morphed through the years to, “Aiden, are you feeling sick?” Sometimes I think we asked him just to make ourselves feel better. What answer were we really expecting? If we asked the question, it was probably already too late. After all, how can he not be feeling sick when his head and arms jerk every few seconds, his face loses color, his pupils become almost too small to see, his “speech” is even more slurred than usual, and his mouth hangs slightly open? But some of the behaviors associated with these small seizures (usually from too much excitement or movement, or light) have always left us wondering what is truly happening in his head. He glances over his shoulder habitually and startles with a little gasp every now and then, as if he’s running from something, but nothing is chasing him. Or rather, nothing anyone else can see is chasing him.

 

A few times he’s run to me, panicked before a big seizure, and those times have broken my heart. But more often, it’s not as clear whether he knows what’s happening. In this ever-experimental attempt to maintain balance between fun, normal life, and appropriate limitations for Smooch, we decided to try the Sensory Night at Pump It Up last night. It’s essentially a large warehouse filled with inflatable bounce chambers and slides. They hold a special night once a month for children with sensory issues, with very limited attendance and no music so these children can move, bounce, and play in a minimally stimulating environment. With his recent advances in seizure control, we thought he might enjoy it.

 

He lasted about 10 minutes. By that time, despite 2 breaks already, he was jerking harder than we’ve seen him jerk with these “smaller” seizures in months, and we left. (I hate the term “smaller” seizures. They last longer than the big ones, and are far more difficult to control. They invade every aspect of his life, and I hate them more than the “big” ones. There’s nothing small about them, but how to differentiate them from the ones where he falls to the floor convulsing leaves me flummoxed. I think I’d lose most of you if I stuck with their true label: complex partial or prolonged atypical absence with myoclonic jerking.) He was zombie-like, and we both felt guilty for putting him in that situation. We can rationalize all it all we want and claim we’re trying to make life as fun as possible for him, but in the end, he’s the one who suffers for our wrong decisions.

 

Back to the words aspect of this story. After he had come-to at home, Andy asked him if he had fun at Pump It Up. He responded, “No, gee me. I iiiicck.” (“No, it scared me. I was sick.”;)  For years we’ve wondered how he felt, and the “sick” part may indeed have been him spitting back that label we gave him. But we’ve never mentioned “scared,” even though we’ve both thought it by the looking over the shoulder bit and quick gasping breaths.

 

So there you go: The sweetest words. Bittersweet. Ones for which we’ve been waiting many years. A window to a world about whose existence we’ve always wondered. But the fact that he could explain his feelings to us makes our connection to him and his experiences so much stronger that we’re grateful for the words, even if they confirm our fears. Or, more accurately, confirm his fears.

Stopping Time

Posted by Nicole on March 15, 2010 at 9:54 AM Comments comments (1)

I’m constantly looking forward to something. Back in high school I made my own 3-month calendars all on one page so I could keep whatever was looming (Prom? AP Tests being over?) in view at all times. I still turn the calendar a full week before the month’s up, much to the dismay of my rule-abiding children. About 12 years ago one of my teachers noticed this and said, “Nicole, if you spend your entire life working toward something or looking forward to something, you’ll miss the here and now. Life IS, not will be.”

 

I tucked it into my pocket and thought, “Little does he know, I’ll go far in life with my forward thinking.” I continued on looking forward… to college… to college being over so I could get married… to grad school... to having a baby (or 3)… to the “baby stage” being over… But it’s true what they say: Life goes slowly until one day you wake up and realize you want time to stop (or go backwards), and yet then it seems as if it’s moving faster than ever.

 

I want time to stop. Now. We are at a great place in life:

 

1. Our marriage is stronger than it was 10 years ago.

2. Our children are old enough to really play with and talk to about deep things. They’re our best friends.

3. But not old enough to notice when we screw up and hold it against us.

4. Again, not old enough to have the weight of their brother and the realization that they’re in this with us, without being asked, on their shoulders. I keep reading Jodi Picoult books, and in almost every one is a teenage sibling of a child with special needs saying, “I didn’t sign up for this. Sure, I’ll wind up taking care of my sibling, but no one even asked me. I’ve never even been on their radar.”

5. Aiden’s having better seizure control than he’s had in years.

6. The quirks he has can still be passed off as his being too young to know better.

7. He’s cute. I know it sounds awful, but it’s just a fact of life: Kids (developmentally disabled and typical) are cutest to the general public when they’re young. Of course he’ll always be cute to us, but he’s not going to be cute to people who don’t love him for long. His eyes are just starting to become wide-set, his face is losing muscle tone, and his behaviors are starting to raise eyebrows. Having him in a stroller now doesn’t draw quite the attention having a teenager or adult in a stroller or wheelchair will.

8. He’s funny!

9. We’re all happy. All 5 of us, most days. How many times in life is that going to happen to a family of 5?

 

So, to my high school psychology teacher: You were right. Life is now. I want time to stop, because I’m enjoying today. But you forgot to tell me how to make that happen!

"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.

Diapers = Flowers

Posted by Nicole on March 4, 2010 at 4:56 PM Comments comments (1)

How long can I go without writing about diapers? Based on my blogging history, about 2 months. I apologize in advance, and do not blame anyone who can’t take another word about diapers and clicks away from this entry now that they’ve been forewarned.

 

After 8 years of lugging diapers home from Target and Costco by the “jumbo” box for one of my children (sometimes two), I received the greatest present a bit ago. As I pulled in the driveway from Aiden’s speech therapy, I literally giggled out loud, for there on my doorstep was a jumbo box of 128 Pampers, Size 6! The giant turquoise package was sitting there waiting for me. Not in the aisle at Target, not in the back of my car yet to be unloaded, but right there on my doorstep. How great is that? For those of you unfamiliar with the diaper black market, these are a particularly rare and precious commodity. Target thinks most kids are potty trained by the time they reach Size 5 and rarely stocks the Size Sixes, so if you see them you need to pounce while you can and hide them under your arm, glancing furtively around you to make sure no one steals your treasure.


I was so excited! Earlier that day I had actually been in Target and had Aiden in the stroller, and so dreaded lugging the giant box from the back of the store and out to the parking lot while trying to get a stroller designed for a 25 lb baby to turn under the pressure of a 42 lb child that I decided to forego the purchase entirely. Yep, just blew caution to the wind and didn’t buy them. I’ve always had a rebellious streak, didn’t you know?

 

I realize no one gives it a second thought at the checkout counter, but the middle school Nicole full of self-consciousness still thinks everyone is staring at her occasionally. (Brian Powers, that’s your fault, by the way!) “Oh, she must have a baby at home. Wait – does that box actually say Size 6? They aren’t – gasp - for that giant kid with her? She should potty train him!” Obviously, no one thinks this – no one CARES what I purchase. I am rational and fully realize the ridiculousness of my paranoia. But don’t tell me you haven’t been embarrassed by some purchase there and thought the same thing.

 

And there the box was, gleaming in the sunshine, on my doorstep. Seriously, it was like having flowers delivered. Better, actually. Someone out there cared enough about our small struggles to deliver a box of diapers! I almost felt like there was a secret admirer thinking of me. True, it was just the warehouse stock boy who slapped a shipping label on the box, whom we actually pay (a lot) considering it’s part of our backup insurance coverage… But still, I’m taking my flowers –er – diapers and running.

 

After a week of this:

 

Pediatrician (with downturned lips, big sighs, and sad eyes): “Has he regressed, or is it just far more obvious as the gap between him and typical children widens? Remind me again – do your families live nearby?”

 

Me: “It’s okay, really. You don’t need to worry about us at night! We are doing fine and have lots of support. We are okay.”

 

And this:

 

Friend (mother of one of Aiden’s fellow classmates for the past 2 years, a kind, compassionate woman whose honesty I do appreciate): “So how’s Aiden doing, really? He just seems so different from last year to this year – last year he was right there with the kids, following along, walking and standing unassisted….”

 

The gleaming turquoise box of Pampers on my doorstep absolutely made my week. It really is the little things that make me smile and appreciate how lucky we are to: a. live in a state where backup insurance is so beneficial, and b. have a little boy who continually readjusts our expectations and perceptions of the world!

Aah-Ooh

Posted by Nicole on February 25, 2010 at 5:45 PM Comments comments (0)

Watch out – This is a long one! Luckily, there are some cute pictures to break up the story :)

 

Aah-Ooh

 

This is “Aah-Ooh.” Huh? “Aah-Ooh.” Not entirely grasping it? Neither were we… for about a year and a half. When Aiden was almost 2 and the doctors were still telling us he’d outgrow his seizures and be fine, our beloved golden retriever, Callie, died. She was our first baby – As newlyweds, we traveled 2 hours west to get her and chose as our first “child” this beautiful little puppy with a furry ridge down her nose and affectionate kisses. She returned the favor by peeing on our laps the whole way home. She proceeded to “finger paint” her kennel each and every day we went to work, which was charming. We both remember thinking, “Maybe if I stop for gas he (she)’ll get home before me and have to clean it up…” Despite her disgusting habits and odd way of showing her love, she wormed her way into our hearts and will always be our first baby.

 

About 9 months later, when I was pregnant with Owen, we picked up Jackson, a yellow lab dying of heartworm and malnutrition, running with a pack of dogs at the lake. We took him home, gingerly nursed him back to health, and discovered he loved my pregnancy naps on the porch swing in the sunshine almost as much as I did. So Andy had Callie, and I had Jack – a perfect foursome.

 

When Callie passed away from cancer, Andy mourned and I looked for a solution. What was the obvious answer? A Christmas puppy, of course! Hasn’t every child and dog lover dreamed of getting a puppy for Christmas? The only thing that can top it is a horse, and that wasn’t going to happen again anytime soon…

 

Aiden was my partner in crime. It was sweetly innocent that he couldn’t tell anyone about our excursions. If only I’d known then what I know now. That he can still keep a secret better than anyone else. We traveled down to a farm an hour away to meet and visit this sweet little puppy, making the trip while Owen was in half-day kindergarten and Alec was at preschool. We had exactly 2 hours and 10 minutes, and we made it back to pick up Alec every time. I employed both extended families to help retrieve and harbor the fugitive until it was time.

 

Even as a puppy she was always at the center of the boys' play

 

On Christmas Eve, Andy was surprised with his very own new puppy to love complete with a big red bow, and he didn’t need to feel guilty about replacing Callie because he didn’t go buy her – she was given to him. A few weeks after we named her Lexie, it morphed to “Lexie-Lou,” but only every once in a while: For the most part, we called her Lexie. So imagine our confusion when, for the next year and a half, Aiden said, “Aah-ooh” as if he were saying the clearest thing in the world. We had absolutely no idea what he was talking about. This happens frequently. (Again, “Dad’s Take” has some stories on this.)

 

 

Always at the center!

 

Fast forward almost 2 years: Last summer I set about trying to make this rambunctious, ill-mannered creature into something useful, and embarked on an adventure to train her to be Aiden’s seizure response/autism assist dog. At that point she resembled Marley (from Marley and Me) more than Lassie, but it was worth a shot. Ideally, she’d be able to support him as he stumbles..er…walks, keep him grounded and “safe,” avoiding the seizures that come when he is scared or overwhelmed, and help him have confidence to make it through a school day. She may be able to lie on him after a seizure to comfort him, carry his rescue medicine, etc. If she could alert us to his big seizures, that would be a bonus (especially at night or at school), but certainly not something we can train outright.

 

 

 

Though many facilities train seizure dogs to respond to and/or alert to people’s seizures, only one facility in the US will work with children, and they require $12,000 in fundraising before they will place a dog. With two dogs already at home and no desire to fundraise $12,000 for yet another dog who might or might not be able to help Aiden, I decided I’d see if Lexie could do the job. Am I crazy? Definitely. But God must have placed Aiden with me for a reason, and my job is to explore what that reason may be, even if searching down crazy roads makes me look like an idiot. If she could pass two levels of basic obedience and assist in one daily task (like fetching Aiden’s rescue meds when he has a seizure at home or wearing them in her vest while out and about), the local autism assist program would consider her for their program.

 

She did wonderfully on the obedience part! She learned to heel perfectly on a gentle leader, could sit, wait for minutes at a time, stay, lie down, stand, and fetch on command, even in public places. She actually behaves better at Target and at the mall than at home or in our neighborhood – go figure. She never sought out treats or affection from strangers in public, and could even make it past the raw meat section of the grocery store without so much as a sniff in the wrong direction.

 

While out and about everyone stopped to comment on what a well behaved, beautiful dog we had. She kept Aiden occupied at the grocery store while I bagged groceries as he held her leash and reminded her to “wait.” I started to teach her to stay by Aiden during his seizures and tried to transfer her affection from me to Smooch. She never did master greetings at our door, though, so most people who’ve met her think I’m absolutely insane for thinking she could be a service dog.

 

Learning to lie down with him after a seizure

 

It was therapeutic for me to have one thing go as planned and be in control of some situation, even if it was only a dog. She was making amazing progress, and we were set to start level 2 (though she’d already passed the ADA list of tests service dogs needed to pass). Sadly, the local agency decided during this time they’d no longer accept owner-trained dogs, so if I wanted to continue down the path, I was on my own. It was about the same time that Aiden’s health took a nosedive, and I was faced with a choice: 1. Continue to sink time into training a dog that is not guaranteed to be able to help Aiden (and about whom Smooch showed little concern at the time), or 2. Devote my time to helping him get healthier and get the meds he needed from France. I chose option 2.

 

And she's so tolerant of Smooch -

Aside from his brothers, she's the only real friend he has!

 

 

Maybe if he becomes more stable and I can convince a facility to work with Lexie I’ll pick it up again, but I’m pretty exhausted with all of the other ghosts we’re chasing right now. I still love her and every time she looks at me I sense she has this untapped gift and wants to help mother him. As Smooch becomes less and less stable and more and more affectionate toward her, I think more about her usefulness as a mobility assist dog if nothing else and am saddened to think I’m the one standing in our way. She has the most tender heart, and loves all of us, wanting to help. Maybe someday we’ll be able to give her the attention and help she deserves. Until then, that’s the story of Aah-Ooh, our very own Marley.

 

One of the walks Dad mentioned. 

Just a pet for now, but we love her anyway.

Aiden's Mission

Posted by Nicole on February 14, 2010 at 10:56 PM Comments comments (0)

You probably know about Aiden’s mission to maim himself by now. He’s making some good progress as far as he’s concerned: He has tried eating various poisonous substances, walking straight off the end of the dock at the lake, opening car doors while on the freeway, etc. I wonder if he has a little checklist up in that head of his and has a set number of attempts to make each month.

 

My mission? To keep him alive. Ideally with all 4 appendages, but merely alive will do. He’s winning some of the smaller battles these days as I trust him more than I should and my attention drifts to some other task, but as long as I win the war, I’m going to call it good. Now, here’s where I need your help: Babyproofing. Babyproofing on steroids. Because this baby can find, open, climb, or unlock just about anything you put in his way.

 

We’ve locked up or put above his reach all poisonous substances. (And by “reach” I mean anything he can climb up to, so this covers all but the space just below our 9 ft ceilings.) The outlets are usually covered. I’m going to gloss over the screwdriver incident of a few months ago since no harm was done – It turns out a Phillips screwdriver doesn’t actually fit into an outlet. Just in case you ever wondered.

 

The water is not so hot it could burn him, the windows upstairs are always locked so he can’t fall out. The major furniture items are *mostly* anchored to the wall. (I have one or two more to go.) No use gating the stairs, as the fall that would ensue from climbing over the gate would be worse than his regular falls anyway. I feel like we should be doing pretty well on that standard list they give out to new parents, right?

 

But they don’t mention that you need to lock up your high heels. Or that hand lotion can’t ever be out, not necessarily because it’s poisonous (it’s non-toxic and meets FDA consumption standards, after all), but rather because it burns your eyes. Huh. Andy found him cowering on our floor last night with his arm over his reddened face and tears streaming from his eyes because he had smeared lotion in them and didn’t even understand what was happening or how to call for help.

 

And tonight he was on his way downstairs to proudly show us that he found two of my huge fuzzy socks, was able to put them on (?!?), and paired them with some classy navy blue heels when he tumbled down the entire second flight of stairs, bruising his head.  Again.  I’m not sure what made him think he could make it down in heels when he has trouble in bare feet, but then again, I’m never sure what he’s thinking.

 

So, I have four questions for you: How should I lock up my heels? And what else am I missing? Do you think he really did eat my wedding ring?  And do I even need lotion? If I have to unlock a cabinet every time I go to put it on, I think I might just skip it altogether… But seriously, what else am I missing? If you have one of those “My coworker’s friend’s niece’s classmate’s sister was____ and ended up in the ER because she ______” I want to hear it. I really do. Because as rare of an incident as it sounds to you, if anyone else is going to be in the same situation, it’s Smooch. And I’ll be explaining to the doctor/nurse/therapist once more what happened and kicking myself for not having the foresight to prevent it!

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.

The Blizzard

Posted by Nicole on February 5, 2010 at 10:59 AM Comments comments (1)

While perspective is a wonderful thing and sometimes we are granted instances of clarity and can appreciate it, I spend most of my time lost in a blizzard not knowing up from down. Seizure meds are not like blood pressure meds or antibiotics, which give a clear answer as to whether they work or not. And Dravet Syndrome is not like other diseases or disorders that run a “typical” course. It’s rare and a recent discovery, so there is no “typical” course. I feel like I’m still a scientist running one great big experiment on my child, desperately manipulating variables trying to make sense of the situation, trying to create some semblance of a future for him.

 

A literal blizzard, and Aiden, King of the Hill.  His brothers are such good sports. 

 

Aiden had a particularly bad day recently – one that would have been entirely ordinary a few months ago, but given his recent advances was considered a setback. (That feels good to write!) Andy mentioned he gave him a cup of orange juice the night before with his meds – did it cause his stomach to be too acidic and the meds broke down and didn’t keep the seizures at bay the next day? Who the heck knows? So, naturally, after a couple of “good” days again (and no orange juice), there I was at the blender trying to make him a cup of O.J. at bedtime to test the theory. My always-rational husband turned to me and said, “Honey, what on EARTH are you doing? Put down the oranges,” and only then did I open my eyes and try to see beyond the white haze in which I live. There’s always something we’re experimenting with, and the answer is never clear. It reminds me of my days in the laboratory.

 

People imagine research and development as this series of experiments, each of which produced some “result” that got us closer to the product… But it wasn’t like that at all. Most of our experiments were inconclusive, and it took running a similar one 15 times and statistically analyzing the results to see that, sure enough, 10 out of 15 times there was a slight trend worth noting that wasn’t even obvious as we ran the experiments. What happened to those other 5? I have no idea. It may seem like there are only 4-5 variables to mess with, but in reality there are a million: air pressure, humidity, manufacturers’ variations in test materials, etc. (Sure, he’s only on 3-4 anti convulsant medications, but think of the millions of other variables in his environment, immune system, diet, age, etc.)

 

Then again, occasionally the blizzard lightens and we see the world in which we’ve been living and are shocked at its heavy blanket of snow that seems to have appeared all at once. The county health nurse came and assessed Aiden for home care services yesterday to determine how much help the state thinks we need to keep him at home and out of an institution. (Don’t worry – there’s no chance of that happening – it’s just the benchmark they use to assess disabled children and offer support for the people raising them.)

 

I’ve answered the same questions a million times before: “Is Aiden toilet trained?” “No, although he was last year.” Her face falls as I explain what happened. “Can Aiden brush his teeth?” “No, but he can suck the toothpaste off the toothbrush like a champ. And he can smear it on the sink – some of his toothpaste artwork is upstairs as we speak, in fact.” The answers don’t seem that bad to me – the blizzard has at least dulled my senses, and I see these as pretty normal things. I can even picture some kids I know doing the same thing… Until I realize I’m thinking of 1 and 2 year olds, not the kids his age getting ready for kindergarten next year. It turns out if you evaluate him as if he were a 1 ½ to 2 year old, he is pretty normal. It’s just when you lay those difficult tasks 4 ½ year olds are supposed to be doing on the table that his mental disability rears its ugly head. “Aiden, what’s your name?” “Aaiiiyyy.” “So can he communicate with strangers?” Well, not exactly. “Does he have any safety related concerns aside from the seizures, which require medical attention?” To which I reply, “Is this the category into which something like trying to eat a burning lightbulb would fit?” She got a puzzled look on her face – she sees and hears of a lot of behaviors, but I think this may have been a new one.

 

So after she “interviewed” him and pulled out the calculator to tell me how much home care we should be receiving, you can imagine my shock as she said, “10.5 hours.” That was close to what I had figured per week, until she said, “per day.” 10.5 hours per DAY?? How can that be? This is my job – I am his mother. How could I need help 10.5 hours out of every day? I wouldn’t even know what to do with myself for 2 hours a day, not to mention 10 hours.

 

She was very nice and explained that I should see it as a compliment, since I’ve been doing this on my own (with a lot of help from Andy and grandmas!) up until this point. She talked about how the other children need me, too, and laid the figure of how much it would cost the state to care for him if something happened to Andy and me. That thought almost had me in tears, because I know that people who love him would take him in and learn to care for him just as we have (it’s not rocket science after all), but my heart breaks thinking of him going through all of the experiments we’ve run on him, AGAIN.

 

       

The view when the snow lets up for a minute and we see how entirely encased in white confusion we are.  p.s.  Thank you to whoever snowblowed (blew?) our driveway this morning!

 

So I was granted a bird’s eye view of this snowstorm for a minute yesterday. It turns out we are, indeed, headed in the right direction, and we may be getting a little help in the future, but there is still no consensus on where exactly we’re going. Our destination isn’t clear – It could be Holland, could be Russia, or the North Pole. For now, my head is bent down again and I’m just trying to keep us going in a straight line. I may try to write some of our findings down, though, so someone following this journey at least has a bread crumb trail for a map, even if it is buried in the snow!

It's not ALL about Smooch.

Posted by Nicole on January 29, 2010 at 3:40 PM Comments comments (6)

Amazingly, it’s not ALL about Smooch. I forget that sometimes. Scratch that - I forget that a lot of the time.  I can completely understand why families with special needs children are often more vulnerable to dysfunction than others. (On that note, can someone please get Aiden the memo? He seems to have missed this point.) It turns out I actually have three kids, and not just one high maintenance one – Who knew?

 

See?  There really are 4 boys in my family - Not just 1 :)

 

Poor Skinny. (That’s Alec, the 6 year old, for those not familiar with anyone but Aiden.) He and I are kind of kindred spirits due to our middle child status. Never the first to do anything, but never the baby or last to do things, either. Always waiting our turn. Sniff, sniff… Case in point:  My dad took my older sister out on a date, just the two of them, when she turned 13. I still remember how jealous and green eyed I was when they went to Chi-Chi’s. For a family who rarely went out to dinner, this was extremely special. They left, I retreated to my room in bitterness, and waited (or stewed, as the case may be) for two years until it was my turn. Dad kept up his end of the bargain, but 2 years is a long time to wait! Aahh, the plight of the middle child.

 

Life’s just not fair. When Skinny came down with a fever on Friday we didn’t think much of it. We gave him some Tylenol here and there – you know, because we supposed we should – but we certainly didn’t keep track of the times, or alternate with Motrin, or anything crazy like we do with Smooch. I might as well fess up:  When he complained his throat hurt, I blew him off, saying, “Oh, I’m sorry honey. Mine did last week, too, but it’ll go away.” After all, he can be slightly overdramatic when it comes to pain since the notorious Brick Incident of 2006. A story for another time.

 

When Aiden’s sick and it’s potentially treatable with antibiotics (ear infection, strep, etc.), I race him to the doctor so quickly Owen and Alec feel the wind in their faces as I drag them across the parking lot. I mean, if you can avoid the long seizure that will inevitably come with the illness, why not be on top of it? But when the others are sick? Not so much.  As long as I'm being totally honest, the only reason Alec was ever even tested for H1N1 last fall was so I could get Tamiflu for Aiden if he had it, since one of our Dravet kids was in the PICU on a respirator from it at the time.  Something still seems not quite right about that...

 

By day 4, when Alec still had a fever I casually mentioned it to the bus stop ladies as I put Owen on the bus, and they said, “Is it strep throat?” It never even crossed my mind until that point. Truthfully? I hadn’t even thought about what it could be. I just assumed it was the virus Smooch and I had last week and moved on. When I got back inside and lifted up his shirt the guilt washed over me in waves, for there all over my little middle child’s chest, abdomen, armpits, and neck was the tell-tale red sandpaper rash of scarlet fever. I’ve had it before. I know what it looks like. It occurs in some children if strep throat is left untreated, and I had not even taken two seconds to look at his body when he had a high fever and said his throat hurt. Duh. So much for dispelling the myth that middle children get lost in the shuffle, huh?

 

The line on that strep test showed up so fast the doctor barely had time to raise her eyebrows at his rash before she had written the prescription.

 

The word neglect comes to mind here… Any thoughts on that?  Wait - Nevermind, I don’t want to know. For the first time in a few months, Aiden had to miss out on school and therapies as I cared for sweet Alec, rather than the other way around. He must have really needed some TLC and attention, because his first day back at school ended with tears and a phone call home 15 minutes into the day. His tender little heart and body had been  (gulp)...neglected… for too long. I don’t like the word, but if the shoe fits…

 

So, Smooch, I’ve been reminded that the world doesn’t actually revolve around you. Crazy! I’ll try to pay better attention to the signs from now on so it doesn’t take something like scarlet fever to wake me up to this fact.  My apologies to Alec for suffering untreated for days, and to Owen and Andy for the things I've missed and haven't even noticed yet.

ABCs, 123s

Posted by Nicole on January 29, 2010 at 2:13 PM Comments comments (0)

Do you have any idea how many letters are in the alphabet? If you guessed 26, you’re way off. There are 52. Why on Earth do we have to have a DIFFERENT letter for the uppercase and lowercase version? I mean, really, can’t we just write the first letter of the sentence a little bigger than the rest and call it good? I think there’s even a font you can choose to do this on the computer, so it’d be no problem. Whoever invented the whole uppercase/lowercase thing should be strapped to a chair and spoonfed cold, gelatinized Spam.

 

You know, teaching a child his letters before school does is a huge undertaking. For Owen it involved hours of dump trucks, car transporters, and wooden letters from the alphabet puzzle. The trucks had missions: “Green Cement Truck, Can you please deliver letter “D” to his home?” “Car Transporter, we need a pickup of Letter “S.” Alec played along, too, but did the numbers at first. Once Owen had moved on to the lowercase letters, Alec was ready for the uppercase ones. It was pretty rewarding, and they played along well.

 

As you can guess, it’s a whole different ballgame with Smooch. We’ve been working on letter A for about 2 years now. Seriously. 2 years. And don’t get me started on the lowercase version, which looks nothing like the capital A. I’ve sort of given up on colors for a while, since they’re: a. really not that useful to know anyway, and b. apparently too difficult for him to distinguish right now. Letters - That’s where it’s at.

 

You’d think it’d be easy – A is always the first in line, there are plenty of examples, and it’s rather striking looking, resembling a tent. But things are never easy for him. I’ve resorted to saying, “Up, down, Letter A for Aiden” every time I see one or draw one. His teachers are going to hate me when they try to teach him to write, starting at the top, since he only knows it from the bottom up.

 

He wants nothing to do with the missions and dump trucks of days gone by. At school I try to act like the other parents and ask him to find his name on his locker. Except I have to stand in front of one locker with my arm awkwardly reaching over to another locker, since a few of the kids' names near his also start with letter A. Do you think they’d notice if I just relocated them to the other side of the hallway one day? There’s just no way he’s going to get that for it to be “Aiden,” there has to be an i (LOWERCASE, too!) after the A. This is just ridiculously complicated, in my opinion.

 

Seriously, the thought of teaching him all 52 letters makes me want to reach for a glass of wine, and it’s not even noon. Thank Heavens for school! At this pace Aiden will know his ABC’s by the year… 2114. Then we’ll try those elusive colors again :)

Life, the roller coaster

Posted by Nicole on January 23, 2010 at 8:25 PM Comments comments (4)

Life is a roller coaster - anyone can attest to that. One moment you’re feeling good, riding high, the next minute life packs one of its unexpected punches to bring you back down. I don’t just mean the big things like births and deaths, or marriages and divorces : We travel through daily peaks and valleys, from the moment we wake up to the instant we fall back asleep. The crazy part is that everyone has their own roller coaster. We don’t share the exact same one with anybody, and while we’re on our roller coaster, it’s only natural to look around at other people’s rides and marvel at their peaks and valleys. But maybe we shouldn’t.

 

I was traveling through my own little ups and downs the other day, momentarily stopped in a minor trough while Aiden was being re-evaluated for physical therapy.  Naturally, he was stumbling and falling around the room, unable to stand on his own for 2 seconds. The therapist thinks he needs orthotics (leg braces/shoe inserts), which really isn't a big deal, but would amount to one more piece of freedom taken from him. I wasn’t sad when she suggested it: I was just a little disappointed.

 

                      

Aiden's home therapy in our unfinished basement -

He's up to 1.4 mph for 1 minute and 30 seconds on the treadmill and is beginning to walk backwards... Jumping he does not appreciate much.  "Goo aahh," or "Too hard" in Aiden speak.

 

 

But then we entered the “stair” room, and came across a beautiful little girl with the most gorgeous curly blonde hair being hoisted from her wheelchair to the therapy table, and suddenly the trough I thought I was experiencing turned into a peak as I imagined the roller coaster she and her family are on. I felt guilty as Aiden walked up and down the stairs, albeit stumbly and with assistance, sensing the unspoken thoughts that floated through the room. The mere fact that he could do it didn’t seem fair to the girl with the amazing smile, and here I had been disappointed a minute earlier.

 

That same day I got a letter from the school asking for permission to test one of Aiden’s big brothers for their gifted and talented program. The peak I was on from our therapy experience just got a little bit higher. (Like I mentioned a while ago: How lucky am I that I get to see both ends of the spectrum?) Later, as I was talking to a friend about her struggles with her child, she suddenly stopped and said, “Of course this is nothing compared to what you deal with.” But that’s not how I see it at all! And that’s definitely not how I want other people to feel, or how I want them to see the situation either.  I wanted to hear more about her child!

 

To be honest, it sounded like the unspoken words floating between me and the mother of the beautiful girl on the therapy table, and only now did I realize that’s not what I would want people to think if I were she. Maybe the girl had just learned to smile and her mom was on cloud nine from the experience. Who am I to take that away by comparing our situations and feeling sorry for her? She wouldn't want that, and neither do we.  Andy and I still revel in others’ achievements, and still ache at others’ heartbreaks - they're just as real and just as important as ours.

 

Our roller coasters are our own. Our expectations set the level or height we think we should be at, and any deviations from this “norm” become our own peaks and valleys. Just because our ups and downs are at different levels from others' doesn’t mean we can’t understand that what they’re experiencing is not what they expected, good or bad. The last thing we want is anyone thinking their struggles are somehow smaller or less important because they don’t deal with seizures, or being hesitant to share positive experiences with us because they don't want to "rub it in."

 

Empathy doesn’t mean experiencing the same situations.. It means imagining how you might feel on someone else’s ride. So I’ll try not to compare our roller coasters and hope you’ll always share both your successes and struggles with me, too.  We're all just doing the best we can with what we were given, and we're lucky to have been given so much. 

Nabbed.

Posted by Nicole on January 20, 2010 at 9:54 AM Comments comments (0)

 

 

Yep. The seizure police got us. (See previous entry.) Me and my big mouth! No sooner had I written about how long it’s been since a big one and stepped out the door for book club, he had one on Andy’s watch. The good news? He came out of it on his own and it was fairly short (a minute or so). Stiripentol saves the day again. The bad news? He’s getting sick and it happened while he was playing Mario Kart… So it’s back to sitting on the couch watching Dora the Explorer for the foreseeable future, dosing him with fever meds throughout the night, avoiding all possible triggers, and the clock has been restarted. Rats.

 

 

And, just like when you pull away from the cop who stopped you, we’re extra careful about our “driving” now. (You’re stuck with me for a bit, since as I type this I’m sitting next to him in bed watching him twitch away in his sleep.) He is usually pretty twitchy while sleeping, and when he’s sick those little myoclonic jerks have more of a tendency to generalize.  Since you never know which one will start the big seizure, it's best to watch him the entire time. The twitches are like a window into the storm happening in his body, a storm which is always there, but is sometimes masked by his strength and our own ability to ignore the unpleasant. When he’s sick he lets his guard down and we get a glimpse of what he battles.

 

So, to sum it up, the score is:

 

Dravet Syndrome: 1

Aiden: ½

Andy: 1

 

Smooch gets half of a point for coming out of it on his own and not needing the paramedics.

Andy gets a whole point for not calling me at book club. :)

The Lake of Normalcy

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

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

 

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

 

So happy

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

 

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

 

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

 

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

The Cat in the Hat

Posted by Nicole on January 11, 2010 at 11:11 AM Comments comments (0)

So, it’s been brought to my attention by my dear, fun-loving husband that perhaps my blogs have been the slightest bit whiny lately. I don’t know how this could happen since I’m such a funny, light hearted person… (insert sarcastic voice) But he's probably right, as usual, so I thought I’d mention some of the funnier things Smooch currently brings to our life.

 

First of all, there’s the fact that his sardonic sense of humor has recently been exposed by our preschool personnel. Specifically, they asked me what we do to reprimand Aiden when he gets… physical with other children at school. Well, since that’s really his only means of communication, I wasn’t sure what to tell them. We have been trying to crack down on the hits, kicks, and punches that he passes off as greetings. But honestly? We’re just glad he’s not roaring at children he meets and wants to talk to anymore. (Yes, roaring.  Like a fierce lion.)  For most of last year that was how he said, “Hi, Do you want to play with me?” The children usually stared for a minute, then turned and ran the other direction. Understandably. Wouldn’t you?  But I do think he’s starting to realize that we really don’t hit people. If only we could instantly box Alec up, as he cracks up at anything involving nuts, kicks, punches, or physical humor. Aah, Skinny…

 

Second of all, the impulses he just can’t control are really quite entertaining. Take his love of cleaning products for example. We recently thought of putting our house on the market for something more, well, Smooch friendly (read: fewer stairs – he is getting too heavy to lug up and down!), and cleaned out the basement and every cupboard and closet, only to have all dangerous materials end up in our master bathroom to be locked in a childproof cabinet. I haven’t quite put them all away yet, and now I panic when I hear the thump-thump-thump of his feet coming into the room while I shower, knowing this is by far the most dangerous room in the house. What else can you do but laugh when you exit your warm shower only to find the bathroom covered in Tilex, your towels reeking of Clorox Bathroom Cleanup, and your closet smelling of Off Family Insect Repellant? Try washing that smell out of every article of clothing you own. Like I said, his little impulses are really pretty funny. He knows he shouldn’t, but just can’t help himself. He even throws in a little eye flutter when I yell at him as if to say, “But Mom, it’s your fault for leaving it in my reach – I can’t help it!” And it IS my fault, because he truly can’t.

 

For those still reading, I saved the funniest for last. Actually, I saved it for last because I’m the slightest bit scared to let the secret out and figure this way maybe some people will tire of reading and not everyone will know. Aiden’s favorite movie, The Cat in the Hat, has some pretty grown up humor in it. At one point the Cat steps on a garden hoe which hits him in the face, and he yells, “Dirty Hoe… Aww, I’m just kidding, I love you Baby.”

 

We don't get how Smooch does this, since he has the memory of a fish, but he has the entire movie memorized and often launches into entire monologues lasting a minute or more, not even slightly understandable to others. Actually, Andy and I often can’t figure out which scene he’s reenacting, either. Many of the scenes are harmless, and I figure it’s helping him speak…

 

But Heaven help me, this scene he’s managed to pare down to two words: Imagine the shade of my cheeks when Aiden lets fly a “Geee Oh” at school, or at therapy, or in front of the grandparents. I put on my best confused face and pretend I don’t know what he’s saying, even when someone asks. (For those of you who missed it, that’s Aiden speak for “Dirty Hoe.” Except taken out of context, I suppose it’d be spelled slightly differently. And he says it in this weird gruff voice like he knows exactly how it’s to be delivered.) “Aiden, put the butcher knife back in the drawer.” To which he replies, “Gee Oh.”

 

Owen and Alec would NEVER have gotten away with calling their mother a dirty hoe. (I’m keeping the garden tool spelling because it makes me feel better about this whole issue, which doesn't sit well with me but is too funny to seriously worry about.) Alec actually yelled it in the backyard the day after he first saw the movie and, despite not knowing what he was saying, I yanked him inside and sat him on the cedar chest so fast I thought his eyes were going to pop out of his head. But Smooch has two strikes against him that Alec does not: A. He has the memory of a fish, and B. He has no idea what he’s talking about. It’s all I can do to keep from laughing.

 

So, somehow, Smooch even manages to make calling me a dirty hoe a blessing of lightness and laughter. It works for Dad, too. And a few others in his life, though I won't mention names in case they haven't read this far and still don't know what he's actually saying :)

The wooden chair

Posted by Nicole on January 5, 2010 at 10:45 PM Comments comments (2)

As we look ahead to the new year and I think about what we’ll learn next year, I can’t help but think about how far we’ve all come. Andy will probably agree that we both used to judge a lot more based on appearance than we do now. Take Smooch this morning, for example. If you saw him when he woke up this morning, you may question our parenting abilities or wonder what exactly we did to him.

 

 

 

This is what I awoke to – his burned lips had broken open in the night and dirtied his bedding and face. (For the full story, see “Medical Updates.” Or just know that it involved trying to eat a lightbulb. While it was still in the lamp. And was on. And had been for hours.)  Where do you start cleaning this kid up?  His Vaseline-ridden hair, the mismatched jams he insisted on wearing, or the obvious face issue?   I don’t know exactly how Aiden ended up here - I can’t quite pinpoint when he slipped off the “typical” pathway and onto the “special” one.

 

All I know is that I woke up one day a couple of weeks ago, dressed us, took him to speech therapy, and it hit me like a ton of bricks. (Why does this surprise me? It happens more than I think it should.) The speech therapist walked us back to the room (or more precisely, followed Aiden with arms stretched out to catch him as he stumbled to the room like a drunken sailor). She turned off the fluorescent lights, turned on the little lamp she has in there specifically for him, and pulled up his usual chair. That’s when I did a double take. You see, his “usual” chair is this odd looking padded wooden and metal contraption with a huge table that locks into place and thick industrial strength belts to strap him down. Upon first glance, it resembles some sort of medieval torture device. (I’m thinking the Princess Bride here…;)

 

When he first started therapy there, he was 2 years old and really not entirely different from other children. He wore glasses and required the lights to be off, but other than that he was fairly typical. He sat at the little table with his small legs swinging below him on the regular chair, played games with her, did flashcards, etc. His attention span was pretty good, and 30 minutes went by quickly. I admit it: I noticed the wooden torture device in the corner of the room and was horrified at the thought of its use. What children needed that awful looking thing? I figured it must have been for those who couldn’t sit up by themselves and needed the full back support, the locking table, the straps, and the pads because they had no control of their bodies. Maybe it was just leftover from when the room was used for feeding therapy. Or maybe it was for the children who were so behaviorally challenged that they kicked and screamed when it was time for speech therapy. Regardless, I was grateful for my sweet child playing Bingo at the regular table.

 

I think Aiden actually decided to sit in that chair one day on his own, and we just didn’t argue, figuring it was merely a curiosity thing. Otherwise that day would likely be seared in my memory as “the day we forced him into the chair.” But he decided to sit in that chair every day thereafter, and on the day a few weeks ago that I mentioned, I suddenly realized he’d been in it for almost a year, and it had become entirely necessary. I secretly love that chair and have contemplated buying one for our house. What would guests think?

 

It still looks like a torture device. But you know what? When he’s sitting in it, his back and sides are completely supported, his legs are kept still, and he doesn’t have to worry about trying to balance himself. Can you imagine having that be a concern every day, all day long? I wonder if he felt immediate relief when he plopped his little body down in that chair for the first time, or if he just gradually got worse all year. He has so much more on his mind than I give him credit for – just trying to keep himself upright is stressful, not to mention trying to do that and concentrate on speaking (his hardest task) or eating or – gasp – walking.

 

I wouldn’t dream of just sitting him down on the mini-sized regular chair at the table in the room anymore. He’d be so overloaded sensory wise that we would get nowhere with his speech. Not to mention the fact that I’d likely have to sit next to him to keep him from falling (or more accurately, launching himself) off the side.

 

He overcomes so much more than even I realize each day. I suppose it’s like diapers: this is another thing that, though I cringed at the appearance at first, helps him and his daily, sometimes underappreciated struggles. I guess appearances just don’t matter like they used to.  Thank Heavens for that on days like today!

 

Like I said, I can’t pinpoint exactly when he slipped off that typical path… But we’re here now, and it’s actually kind of pretty. The things that look like weeds and thorns at first along this path (the wooden torture chair) have turned out to be flowers in this strange new world, if we just look closely enough. I wonder what else I’ve written off based solely on appearance. I’m sure I’ll find out in time – this is quite the journey, for all of us, and we’re ready for another year.