Aiden's Journey

One Little Boy's Battle with Dravet Syndrome

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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.

You win some, you lose some.

Posted by Nicole on June 16, 2010 at 8:43 PM Comments comments (2)

I can only imagine how I looked at that moment. My hair had perfected that combination of frizz and drenched mouse like only my hair can after 10 minutes of splashing in the pool water with my boys. We’d had a great time so far: swimming is truly the favorite activity of all three. But things change in a heartbeat in our household.

 

The water felt like weights against my legs as I rushed out of the zero entry area, pushing it aside in an attempt to clear the danger zone quickly. I suppose the most notable thing was the giant 3 ½ foot creature convulsing in my arms, water spilling down from his wetsuit and lifejacket. His sunglasses, thankfully, shielded the observers from the most haunting feature: His eyes rolled up into his head.

 

The lifeguards descended like mosquitoes on fresh meat, already on their walkie talkies with the front desk, ready to call 911. One asked, “Can I call someone? What does he need?” I absent-mindedly said, “No, we don’t need anything. He’s okay,” and only then did I look up at his face. I couldn’t figure out why this man towering over us looked so odd, eyebrows as high as his hairline, mouth half open as if he couldn’t quite form the words, until I looked back down at Aiden. Oh, right. I realized the look on the lifeguard’s face said, “Lady, you’re out of your mind. This kid is clearly NOT okay, and I should do something.” I quickly amended my statement to, “Well, he will be okay in a minute, anyway.”

 

You see, I forget that he looks… well… not okay during his seizures. His eyes roll up into his head, his face goes grey, his lips and fingers turn blue, he gurgles a bit, and there’s the obvious shaking issue. Perhaps the most troublesome period is just as he finishes, when his entire body goes still (eyes still open and rolled up) for a few seconds. No shaking. No breathing. No pulse. Nothing. Then he takes a long gasp, closes his eyes, and falls into a fitful sleep which deepens after 5-10 minutes.

 

The rest of the story is pretty uneventful except for one thing: We stayed at the pool. Owen and Alec had been so excited to finally go swimming on summer break, and I couldn’t tell them we had to go after only a few minutes because of their brother. Again.  I’m sure a few of the onlookers thought I was negligent for not immediately taking “the boy who just had a seizure” to a more comfortable place, but I don’t care anymore. I am the mother of three, not just one.

 

Likewise, I can only imagine how crazy I looked tonight, stopping the stroller every ½ block or so to check on my sweet sleeping boy. His bare feet almost touch the ground as he lies reclined in the stroller, head turned slightly to keep his bottom from falling out the front. I can hear the thoughts: “Why check on him? He’s just a big kid taking a nap in a stroller that's too small for him. Besides, isn’t he a little old to be taking a 6:30 pm nap?” What they don’t know is that I can’t tell if the jerks I see his little body make are just the natural bumps in the sidewalk, or if he’s having a seizure. You just never know what other people’s realities are.

 

I don’t have anything witty to say, and there’s probably not some greater lesson in these stories. But this is our life. It’s our reality. Sometimes it’s so precious it’s like a high. Other times? It's not quite as high :)

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.

 

Photobucket  Photobucket

 

 

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.”

SUDEP

Posted by Nicole on June 6, 2010 at 10:00 PM Comments comments (0)

She carried him up the stairs, his heavy legs dangling below her waist. She couldn’t believe he might soon give up these afternoon naps, that she might soon not get to smell the sweet scent of his hair next to her cheek. At 2 ½, he was already getting some of the little boy features that marked the start of a long, beautiful life. He opened his groggy eyes for a brief moment, nuzzled her nose with an Eskimo kiss, and placed a soft, squishy peck on her cheek. Despite the long morning they’d had, she took in the sweet warmness of his body as she carted him up for what would be his last afternoon nap. She had no idea these things would suddenly be gone, not because her little boy had grown up, but because he hadn’t grown up. 

 

What do you do when a child is wrenched from his mother’s arms too soon? What can you possibly say to the grieving parents who have gone to Hell and back, a journey no parent should have to make, one that none of us can possibly imagine? How do you let their brothers or sisters know it’s okay to live their lives? I guess we don’t. Because we can’t possibly understand the depths of their loss, no matter how much we fear it ourselves.

 

Every month or two, our small Dravet community loses another child to Dravet syndrome, either from SUDEP (sudden unexplained death in epilepsy), prolonged seizures, or complications. Our delicately balanced boat was rocked again this week when a child from Wisconsin lost her battle, forcing us all back to that dark place where we hug our children extra close and thank God it wasn’t our turn. Because you never know if or when it will be – that’s the ugliness of this. Seizures are sudden, and we always wonder if this will be “the one.” An 80-85% chance of surviving to adulthood seems like pretty good odds at first glance. But stretch that 20% worry rate out over 15 years and you wind up with a set of mentally, spiritually, physically exhausted parents who feel like they’re playing a game of Russian roulette. It’s totally random.

 

That’s when my extremely private faith collides head-on with this public journey. Nothing we can say to these parents helps them feel better – our condolences only help ourselves. Yes, we know the child is in Heaven, finally seizure free, finally running and able to enjoy life the way we dreamed they would. And yes, we know God has a perfect plan for those left behind. We know He’s in control and still loves us, despite the fact that they likely feel abandoned right now. The child is free, surrounded by angels, and watching over their family.

 

Would I believe this faithfully if it were my own son? If I were the one left behind to wait? The one who had to carry on and show his siblings what a beautiful, purposeful, meaningful life he lived when all I might want to do is curl up in a hole and shut the rest of the world out? I hope so. My faith says yes, my flawed human brain says no. So I pray these things:

  1. That the peace that surpasses all understanding might surround the bereaved families,
  2. That these tragedies might grow seeds of faith where the soil seems impossibly barren, and
  3. That Aiden lives a long, fulfilling life, so it's never my turn.

We're a team, I guess.

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

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

 

 

 

And this:

 

 

 

But then again, they also do things like this:

 

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

 

And this:

 

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

 

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

 

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

 

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

 

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

Quirks

Posted by Nicole on May 24, 2010 at 8:49 AM Comments comments (1)

On a lighter note, sometimes we need to stop, smell the roses, and appreciate the quirkiness that embodies Smoochie Bear. One minute he’s modeling scuba gear (You think he’s normally wobbly? Imagine him in flippers.),

 

 

 

 

And the next he’s escaping to check on Bumblebee. Who the heck is Bumblebee? you might ask. Bumblebee is a Transformer: A yellow camaro to be exact, with black racing stripes down the top and who (aside from the color “lellloooo”;) shares very little in common with a Jeep. When Andy brought that thing home, Smooch honestly believed it was Bumblebee, come from the world of animation to live in our garage, camouflaged as Andy’s yellow Jeep. He talks to him. He checks on him. If it were up to him, he’d sleep in him. This winter Andy could have picked any color his heart desired when he and his dad repainted it. Sleek black, “fun” red, even patriotic navy blue. And yet here Bumblebee sits in our garage sporting the shiniest, glossiest coat of Chevy yellow you’ve ever seen.

 

 

 

 

 

I’m not exactly sure what Fric and Frac’s plan was here, though it seems they were trying to make their escape in the 15 seconds I took to answer the phone. And they actually switched places in the time it took to get the camera – it was way more “Smooch” when Lexie was driving, the way I first saw it.

 

“Smooch, get out of the oven.” Variations of this include; dishwasher, dryer, washer, cupboard, etc. but I’ve said most of the variations to the other children when they were little, so the oven one is uniquely Aiden.

 

“Smooch, get off your brother.” This one wouldn’t be too odd except that when he tackles Skinny (the 41 lb first grader), Skinny seriously can’t get up. No matter how hard he tries. Instead he flounders on the ground, bony limbs flailing around, emitting this high pitched squeal of half panic, half enjoyment. Sometimes Owen, the 8 year old, will come to the rescue…. Sometimes not. Lexie does a better job of wrestling and playing tug of war than Skinny.

 

 

 

 

“Alec, is Aiden still breathing?” Okay, it’s a little morbid, but it counts as funny in our odd world. I mean, what exactly was I going to do if the answer was no? How much therapy are we talking here? This one was muttered last week after Aiden had a seizure and was sleeping it off on the couch. I was making dinner, and as I watched Alec put his hand on Aiden’s chest, feel it move up and down and put a finger under his nose to check for breaths, I realized most 6 and 8 year olds aren’t trained in first aid like my kids are. Neither are most dogs.

 

 

 

And lastly, the obviousness of their Hide – and – Seek game, which leaves these two giggling (or as giggly as a dog can be, tail wagging and smiling), embodies the craziness that is Smooch. You see, he actually thinks he’s hiding. And that’s why I love his eternal 2 year old mind.

 

 

Honesty vs. Propriety

Posted by Nicole on May 18, 2010 at 5:56 PM Comments comments (0)

Honesty: Fairness and straightforwardness of conduct… implies an absence of lying.

 

Propriety: Conformity to what is socially acceptable in conduct or speech: fear of offending against conventional rules of behavior.

 

I walk a thin line between honesty and propriety here. I’m honest about a lot of the aspects of Aiden – the sweetness, the kindness, the purity, the amazingly perfect creature he is. I’m honest about the struggles he goes through and the obstacles he overcomes, as well as most of my reactions to these. Often times we can keep it within the confines of social acceptability as long as there’s a spin of hope, or an appreciation of our blessings. When something like Dravet syndrome barges into your life, the best thing to do is to slap a smile on your face, look on the bright side, and be thankful for your amazing blessings. After all, it could be worse. A lot worse. He’s a wonderful, strong, amazing little boy. And you always want to be the one who handles things gracefully. But honestly? Sometimes that’s not exactly what I feel.

 

I don’t always share the darker thoughts, the entitled and self-centered “It’s not fair to him” thoughts that enter my mind. There are some things better left unsaid. But they still come. And I’m amazed at how normal our life can look on the outside, yet how distinctly abnormal it is when you peel away the layers of tape we’ve patched it with. Days that would look wonderfully mundane, normal, effortless, or fulfilling to an observer are so carefully planned out (with a cost-benefit analysis performed before EVERY activity Aiden undergoes) and so ridiculously bargained for that they become small mountains to us. Sometimes we’re proud for having overcome the mountain, invisible to others, and sometimes we wish we’d stayed back at base camp.

 

You know what? Let’s just leave it at that. Almost every “normal” thing we attempt comes with a price, and our job is to decide whether the activity justifies the price. Today I think the activity was worth the price, but sitting here next to my sweet post-ictal boy (the one who actually pays the toll) leaves me with some of those disgraceful thoughts. And that’s the honest truth, improper as can be.

Aah-Ooh Part 2

Posted by Nicole on May 7, 2010 at 9:57 AM Comments comments (2)

Talk about things I never thought I’d be doing. One thing I’ve learned through Aiden’s Journey is that I can’t predict where I’ll be or what crazy thing I’ll be doing a year from now. Did I ever think I’d consider spending two and a half hours in a doctor’s office with Smooch and a four legged service dog in training normal? Not exactly.

 

But that’s what we did today, and the fact that I enjoyed it might indicate that I have a big sign with flashing lights on my forehead that reads C-R-A-Z-Y. Let me back up. Aiden’s had a fever on and off for about a week now, which he has handled like a champ. A few big seizures, but nothing requiring sirens or even prescriptions. So with the latest spike I took him in to his pediatrician just to make sure we weren’t missing anything. (Who, by the way, resembles the mad scientist on the Simpsons. He’s this wiry older man with circular glasses and a way of wringing his hands as he recounts the history (down to the color of the lead-free-paint in our home) with EVERY single appointment.) I think he blocks off 2 hours every time he sees Aiden’s name on the list because he just can’t fathom the randomness of Dravet and needs to recount every piece of the puzzle. We adore him for this.

 

After sitting in the empty waiting room for about 20 minutes, the receptionist came over, sat down next to me, and said, “I’ve got to be honest with you. Our computers and phones are totally down. It’s going to be a while before he sees you.” (Note: When a receptionist says it’ll be “a while,” you can count on at least another hour. I think they keep their own version of time. ) At which point I calculated exactly how long Lexie had been in the car waiting, and how long she would likely continue waiting (thanks to the pediatrician’s thoroughness). I don’t usually bring her in to schools or doctors’ offices (especially ones shared by the allergy clinic, since you never know what poor allergy-ridden person you’re going to make miserable with the presence of dog hair), but sure enough: I found myself politely asking the receptionist if she minded if I brought in his service dog in training.

 

Enter Lexie. Or, more accurately, Aah-Ooh. I am thinking of officially changing her name because when people ask Aiden what his dog’s name is, it would be so darn much easier just to say, “Aah-Ooh. It’s Hawaiian.” rather than explain that her name is actually Lexie, which sounds absolutely nothing like Aah-Ooh. Sigh. Why couldn’t we have picked a simpler name? What was wrong with Max?

 

Moving on. She proceeded to lie down and play with Aiden for the entire 1 hour wait. He keeps a fanny pack of dog food around his neck, and she seems to find it mentally challenging trying to figure out which hand is going to produce the treat. He would giggle as her fuzzy warm nose snuffed out the treat, and he laid on her stomach as he lazily played with the waiting room toy. (Yes, I said, “toy.” They have one. Thank Heavens for Lexie.) They did a little of their hide and seek game (which isn’t exactly challenging on a 4 ft leash, but still entertains those two. Are you sensing they’re on the same cognition level? You didn’t hear Lexie may be slightly more advanced from me…;) Get this: I read a book. An hour wait at the doctor’s office usually sends me to that place where I see little wine glasses dancing around on the pleather chairs, but today it actually counted as “down time.”

 

In the room, she was calm, content, and polite, though the two’s interest in each other had waned ever so slightly by then. It’s funny: people bend down and talk to Aiden when she’s around. They get down to his level and ask him about his dog, then ask his permission to pet her. He seems to feel powerful and appreciated as he grants or denies permission, and the questions they ask are things he can answer. Rather than hearing, “Wow, I like your shirt – what color is that?” for the billionth time and being flustered or ashamed because he doesn’t know the answer, he hears, “What a nice dog you have. What’s her name?” To which he replies, of course, “Aah-Ooh.” With confidence.  And no one ever tells him he's wrong like they do with the other questions, saying, "No, it's not blue, silly - It's green.

 

So despite the fact that she did not alert in any way, shape, or form to the last seizure, and I had to call her to lie with him for the latest one, she is actually becoming an assistance dog. In all the things I imagined doing with my life – finding cures for diseases, researching and developing new chemical products, getting my Ph.D, and other ridiculously lofty ideas I had – I never thought I’d be training a service dog. But Aiden is our leader on this journey, and we’re all along to make sure he enjoys the ride.

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.

Unspoken

Posted by Nicole on April 28, 2010 at 10:20 AM Comments comments (0)

I can pick you out of a crowd at the first grade performance, or from a group of moms on the playground. Though we don’t speak, there’s a peace and understanding that passes between us, felt but not acknowledged, heard but not said. You share the same wrinkles, the same starry yet weary eyes, the same observance of the situation, and the slightly upturned mouth that seems to say, “I know. It’s okay.”

 

It’s the little things that give you away. Your children are running around – All of them? Is there one missing? I’m not sure. You may be speaking with another mom, but she doesn’t have your full attention. You are constantly wary of the situation, unconsciously surveying for possible dangers, sudden noises, potential disasters no one else would pick up on. Your unpainted fingernails are either bitten down or hastily cut with clippers, but not filed. Your clothes may or may not be up to date – it’s something others might notice, so you try to stay “with it” as much as humanly possible, given the situation. Your hair is fixed, but not primped so as not to scream “forgotten.”

 

You smile, you laugh, you do everything the others do. But it’s not with the same attention. And when you stop, you catch yourself for a moment, breathing in quickly as your mind returns to the deeper worry that is ever present. Do you feel guilty for laughing at the trivial things? Maybe. More often you seem to wish the laughter could go on indefinitely.

 

I can’t always tell exactly what unites us, though sometimes it is painfully obvious. I’m sure you can’t quite put your finger on it, either. I never noticed you before Aiden. I may have noticed your child, throwing a tantrum over his jacket zipper, or limping in her walker, but I rarely noticed you in the background. Yet you were ever present. When you nod subconsciously at me now or your gaze lingers a second longer than others’ I know you’re not staring, but silently supporting us. You don’t stare at Aiden. You see him briefly, and immediately turn to find his mom. You know from experience exactly what to do, what not to say, and your children treat him well because they, too, know what it’s like.

 

Some of you are my friends, some of you are strangers. Either way, our conversations don’t revolve around what it’s like because we both know. It passes between us unspoken.

 

Understanding. Peace. Hope. Your face says this all without your mouth ever opening, and for that I am grateful. You show me it’s okay to laugh, it’s okay to talk about silly things, and it’s okay to be happy. I’m sorry I didn’t understand before, and I’m sorry if I judged. But you already knew that, didn’t you?

Hold that Thought

Posted by Nicole on April 23, 2010 at 11:54 PM Comments comments (0)

There are so many good things to report this week! I won’t even try to be witty or articulate – too much to share, too little time…

 

First of all, a big fat “You’re right, I’m wrong, You’re smart, I’m dumb” goes out to my dear husband. After writing about my relief at putting Aiden back in diapers, I just couldn’t help but give him one more shot the next day. And… he’s doing well! A few incidents here and there, but well overall. (See? If I say “incidents” instead of “accidents” you can even pretend this isn’t yet another blog about diapers. Because who really wants to read all I have to say in that department?) My wallet is much thinner for all of the bribes – er – positive reinforcements we’ve given him, but I am not above bribery. Okay, maybe I used to be. But this kid knocks me off my high horse too often to even pretend I can ride it anymore.

 

Second, - Actually, I have to stay on that first one for a minute longer because it is a big one, 4 ½ years in the making. I’m very proud of him, very impressed with Andy’s intuition, and so much more relaxed this time around. I don’t even feel like I’ll be disappointed if he needs to return to diapers in the future. And if I ever need to see a therapist (which I am definitely not ruling out at this point), I can refer back to that statement to show her how sane I am. Or how sane I can be.

 

Now, second of all, we got a notice from Can Do Canines that they are going to make an exception to pretty much all of their rules and evaluate Lexie and Aiden for their program! A. They don’t provide seizure response dogs to children under 18. B. They don’t accept owner-trained dogs into their Autism Assist program. But I appealed to the kind-hearted trainer one last time after Lexie’s recent success in the response/possible alert department, and she has agreed to take another look at it.

 

 

When his brothers are at school, she's all he's got.

 

So training is back on, Lexie is thrilled she is going everywhere again, Aiden is way more with it and helpful this time, and things are going well in that department. We got our first letter of recommendation from the trainer tonight, and she made my evening when she said, “If it doesn’t work out, it won’t be because of Lexie’s personality, temperament, or obedience.” Anyone who’s come to our front door and had our beast of a dog greet them can appreciate how much this endorsement means! She still needs to actually pass their strict evaluation protocol and may never end up in the program, but at least I can finally say I gave it my best.

 

Third, Aiden has had a few fantastic days in a row. Don’t know why, don’t particularly care why, just grateful for what it is. Good night!

 

He had the stamina to follow Dad around

 the ENTIRE time tonight - he doesn't usually make it that far!

Guilt

Posted by Nicole on April 18, 2010 at 8:59 PM Comments comments (1)

Here are a few things I have been feeling guilty about these days:

 

1. Not doing enough therapy at home with Aiden.

2. Not patiently waiting for Aiden to walk everywhere we go to give him exercise in short bursts.

3. Not putting forth more effort to potty train him again since he can “go” #1 on command.

 

Issue #1 was graciously taken care of for me by a recent Autism Panel discussion, in which an expert said, “Anne Sullivan (who taught Helen Keller all of her communication skills) was not Helen’s mother. The teachers will do their jobs, and these kids need their mothers to be mothers, and their grandmas to be grandmas. Hug them, cuddle them, love them, teach them the ways of the world. But don’t spend your time with flashcards and reinforcements.” Done and done.

 

Here’s a typical scenario to help me justify issue #2:

 

Yep, that’s me you see. Still me. I realize you’ve parked, gone in to school, picked up your child, signed him/her out, gathered the backpack, and are now leaving the building swinging his/her arm as you watch for cars and cross the parking lot. But that’s still me. And I’m still trying to get Aiden from the front school’s door to the car. Oh, he’s pointed in the wrong direction, reaching for the rock behind us with his arm twisted oddly away from my wrist? I hadn’t noticed. Did he really just slump into a heap on the pavement because he was interested in something else – Heaven knows what – and didn’t feel like walking anymore? Huh.

 

Do you remember when your baby first learned to walk? At about 18 months of age most of our children could have walked across the parking lot. But it would have taken about an hour. So we all just scooped our little ones up and carried them across, right? Here’s the thing about toddlers: They’re little. Smooch is not so little. The “scoop” action looks more like a “squat, brace, heave, readjust, grunt, and..go” action, I fear. Sometimes I carry him and my back pays for it, sometimes I bring the stroller with and feel guilty for using it, and sometimes if we have enough time I just plan an extra 10 minutes for the jaunt. Who am I kidding? An extra 30 minutes.

 

And here’s a recent scenario to help me justify issue #3:

 

(Andy is upstairs getting the boys ready for bed, and Smooch voluntarily heads to the toilet, pulls down his diaper, and pees.) Andy: “Smooch, what a good job you did! I’m so proud of you! Would you like to wear big boy undies?”

 

Me, running up the stairs shaking my head in slow motion: “Noooooooo…….”

 

Andy: “Okay, Sweetie, tomorrow let’s try big boy undies and see if you can keep them dry.”

 

At this point the promise had been made, so all that was left to do was discuss whose responsibility the floor cleaning, laundry, and poopy-undie swishing would be. Andy agreed to it, so what else could I do? It must be a little like childbirth (once): You forget how awful it can be. Except I hadn’t forgotten. As in, not at all. And no part of me wanted to go back to that dark place of constantly watching him for signs, which is entirely tolerable when you know it’s just a phase and they’ll soon “get it,” but after months of it can really depress a person. And seriously, who likes to swish?

 

Add to that his new orthotics and the fact that he always has shoes on, and the whole thing becomes WAY more complicated. To Andy’s credit, he did a fabulous job on the #1 aspect and was dry all day. But I suppose we knew he would be since we still take him despite the diapers. One #2 in the undies (which required his shoes off, braces off, undies cleaned, legs cleaned, then the entire process reversed) after several attempts on the potty was all it took for Andy to declare he was back in diapers.

 

Honestly? I’m 100% relieved. I had already formulated my excuses for not leaving the house tomorrow.  But he will get this. He may even get it this year. But until I know it’s time, my heart still belongs to diapers. And my guilt is assuaged just a little bit for now.

One door closes...

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

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

 

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

 

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

 

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

 

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

 

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

 

Such a sad little boy, such a good girl

 

 

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

 

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

 

  

 

 

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

 

 

Odds 'n Ends

Posted by Nicole on April 5, 2010 at 9:40 PM Comments comments (1)

I've been a little verbose lately, particulary on the subjects of sleep and diapers, and since pictures of Aiden sleeping are a) few and far between, and b) not very exciting, and pictures of Aiden's diapering issues are... You know what?  Let's not go there.   I thought I'd give your weary eyes a break from my writing.  Here's what we've been up to lately:

 

Smooch and Skinny on Uncle Andy's ride

.

   

              Cake #18, for Owen -                                 But I finally got to make a pretty one

  The usually pick transformers, cars, etc....                                for Easter!

.

My handsome boys on Easter

.

 

She's been leaping into the car when

we go places lately...  I guess she decided it's

time to train some more!

.

  

Outside.... Enough said.

 

 

 

 

 

 

 

 

Sleep like a baby??

Posted by Nicole on April 1, 2010 at 10:32 AM Comments comments (0)

11:00pm.  I think he might be asleep. I am grounded on the floor of his room, my bottom devoid of oxygen as it’s been asleep for the last 33 minutes. How can my butt fall asleep faster than a 4 year old with no nap? I’ve put every single one of my appendages to sleep in the last 2.5 hours, shifting and maneuvering to avoid the rug burns that come from elbows buried in the carpet, back aches from sitting up against the wall, then over-corrected perfect posture, and dents in my hips from the belt loops being pressed between the hard carpet and my hip bones.

 

I think he’s asleep. Still, I am too terrified to move to go peer at his face to make sure he’s really asleep, and will thus spend the next five minutes barely breathing in case he’s just now drifting off. All signs point toward sleeping: His pulse is down under 90, his heart rate is steady, his oxygen isn’t jumping around, he’s fairly still, it’s 11pm for Heaven’s sake and we’ve been at this since 8… (Wait, I suppose that last one isn’t really a sign he’s asleep, is it? But wouldn’t that count as a reason to assume a child is sleeping in normal households?) Finally, I tiptoe out of the room, carefully avoiding the creak in the hallway floor, relief washing over me as I dream of climbing into my own soft bed in a few minutes.

 

1:30am. I stumble through the dark hallway, ignoring the creak in the hallway floor and bumping into the doorframe as I scramble to turn off the alarm sounding from the pulse oximeter as he’s woken up. I slither into bed next to him, wrapping my arms around him as the cold sheets send shivers up my legs. His yelling has subsided to a contented, “Mom,” and he snuggles into the crook of my neck. I fall asleep with him staring at my face. Awake, but knowing there is nothing I can do to help him other than be by his side.

 

3:15am. Oh Lord. It isn’t, is it? It’s just a really cold patch in the sheets. It must be. I slide my hand over it and groan, for there is indeed a large wet spot. Aiden is slumbering peacefully. Who knows when he actually fell asleep. Who knows how long the poor exhausted boy has been sleeping in the wet spot. I foggily run through my options: Is there room for both of us to just move over? (I know you may find that disgusting – I would have a few years ago, too. But after his leaking through his diaper 5 of the past 7 nights, I’m finding it a more and more attractive option.) If I change the sheets, he’ll wake up, and it’ll be another broken night of sleep, more seizures during the day, and a sleepier, crabbier me. I realize this one must be changed since it’s in the middle, and set about it. There may be some stomping involved. 

 

5:50am. “Go ga-gee.” (“Go downstairs.”;) No, Lord. Please don’t say he’s awake for the day. He’ll never make it through with no nap, and then we’ll be back here at midnight trying to get him to sleep. “Aiden, just snuggle me a little. I could use your snuggles.” He does, and we both fall back asleep. Eventually. My dreams are infused with Andy’s showering, the dogs’ tails thumping on the floor, and the garage door closing.

 

7:45am. Owen and Alec wake me up to get them off to school. I carefully untangle myself from his pulse ox cord, slide out of bed, grab the bundle of midnight soaked sheets from the bathroom floor and make my way downstairs. It’s been a long night, but I’m thankful he’s made it through another one. He’s alive, we get another day, and I’ll forget about the lack of sleep by noon. We’ll see you again tomorrow night – same time, same place. Except tomorrow night it's Andy's turn for the first half of the night. 

 

(This one is for those who ask how we're sleeping.  Short answer:  Not great.  Long Answer:  You just read it.  But I am so scared of SUDEP that the nights terrify me, and every morning I am truly, deeply, honestly grateful we've made it through and get another day.)