Aiden's Journey

One Little Boy's Battle with Dravet Syndrome

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Hi! My name is...

Posted by Nicole on September 25, 2010 at 10:24 PM Comments comments (2)

Dear New Neighbors,

 

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

 

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

 

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

 

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

 

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

 

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

 

As sincere as can be,

 

Aiden, or “Smooch” as my family calls me

Goodbye, Home

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

Dear New Owners,

 

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

 

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

 

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

 

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

 

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

 

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

 

 

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

IDEA Leauge Conference 2010

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

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

 

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

 

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

 

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

 

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

 

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

Warp Speed

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

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

 

In the last 3 weeks we have:

 

Started a new job in Denver (Andy)

 

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

 

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

 

Sold the house

 

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

 

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

 

 

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

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

 

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

 

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

 

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

 

Returned home at 8:30 pm to no power

 

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

 

Toured 45 houses (Nic and the realtor)

 

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

 

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

 

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

 

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

Goodbye, Jack

Posted by Nicole on August 21, 2010 at 9:46 PM Comments comments (3)

I don’t like saying “goodbye” any more than the next girl. At the same time, when you love someone it means letting them go when they need to. I love Jack, our 11+ year old yellow lab, and today I let him go.

 

I don’t really have the words to describe it, so let’s leave it at this: I don’t keep a lot of friends. I prefer a few close ones, and Jack was one of my best.

 

God’s timing is perfect, isn’t it? We sold our house last night. (Actually, I said “yes” to the realtor while: A. Andy was on a plane home from Denver, and B. Aiden was seizing on his bike. Literally.) Jack wouldn’t have survived the move, and the relief of not welling up every time I try to get him to eat a bite of food – any food – is welcome.

 

But it’s still hard to say goodbye. Our big move in the next few months seems so much more daunting without him. Why? He was only a dog. I suppose this is just the first of many times we’ll say “goodbye” in the next few months.  It hurts.  I will miss him dearly. He was one of my 4 best friends, and he left a hole akin to the one you feel the first time you have your heart broken. This one’s for you, Jack, wherever you are.

Aah-Ooh, Part 3

Posted by Nicole on August 13, 2010 at 10:10 PM

Here you have it, as previously promised: A Lexie update! The distinct odor of dog slobber mixed with spicy chicken treats is wafting up to my nose as I write, telling me we’ve been working hard and have news to share.

 

Let me be the first to admit that when we started this a year ago I had no idea how much “stuff” (quoting Doc Hudson from Smooch’s favorite movie, Cars) Lexie has in her. That girl amazes me with her adaptability, calm demeanor in scary public places, and patience every day. Okay, some days she annoys the hell out me. (Ann? Kathy? I’m sorry she was such a pill!) But most days she is a wonder.

 

Let me also be the first to admit that I had no idea that certain skills would become so valuable. Have you seen Aiden and Lexie out walking lately? Yes, you heard me: walking.

 

 

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Look, Mom!  I CAN balance on one foot.. With Aah-Ooh's help!

 

Aiden walks into every building we enter these days – all the way from the non-handicapped parking space. (Unless Dad’s around, in which case a shoulder ride is definitely the preferred mode of transportation.) Before we introduced the handle on her cape, Aiden would hold my hand for about… 10 feet, then abruptly stumble in front of me and ask for “up.” If I declined, he would either sit down in the middle of the parking lot, thus necessitating the “up” even more (and just so we’re clear: a 43 lb dead lift is much simpler from thigh-level than from the pavement), or he would confusedly stand and look at me with his resigned face contemplating the long walk into the store. And then crumble into a dejected heap. He lacked the strength, endurance, muscle tone, and balance to make it across a parking lot, and having “ups” everywhere was not helping the situation. But how do you say “no” to that sweet, angelic, pathetic face staring up at you?

 

These days he’s in charge of Lexie – he holds on to his handle on her harness and walks his dog in. When he stumbles against her she braces herself and doesn’t move to let him fall. She’s at just the right height for a little support. In crowded areas I tether Aiden to Lexie and if he lets go (as he sees some shiny object in the distance… or just a fascinating rock…;), she stops as soon as she feels the tension on the tether. She waits until he comes back to her and grabs his handle, then we continue.

 

 

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Sometimes he still gets tired :)

 

She fetches his emergency meds from the back steps when we’re out in the yard so I don’t have to leave Smooch or carry him while he’s seizing. She’s learning to “get help” when directed (by Owen and Alec for now), which involves coming and tugging on a rope I wear on my belt loop and dragging me to the desired location. Hopefully in the future (years away as she practices this skill), she’ll associate him going down with getting help and will perform this one on her own! She snuggles him during a seizure and sleeps with him at night. (Actually, she sleeps on her own cooling waterbed next to his bed at night. You can’t take all the crazy out of this girl.)

 

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Her alerting skills have been not so hot lately, probably because he’s been having near-constant small seizures for the past couple of weeks. Yet I’m so happy with the help she’s providing in other areas that I’m not even that disappointed in the lack of alerts.

 

I saved the best for last, though. She is helping him make friends. Not real friends, of course, but kids who will talk to him or sit next to him, or at least not look at him like he’s from outer space. The other day at Owen and Alec’s swimming lessons, a little boy and his mom came in to the bleacher area. The boy and Aiden are exactly the same age and had been playing their Leapsters side by side for the past few lessons. (And seriously, what more is there to friendship than someone who’ll sit next to you in awe of the fact that you have the same Cars game, even if you have no idea how to work it?)

 

This particular day Aiden was at summer school (a story for another time, but summer school was not exactly a resounding success), so he and Lexie were not at swimming lessons. The boy and his mother walked in, and the boy came right up to me and asked, “Where’s… (here I’m expecting him to say “Aiden,”;) .. Lexie?” It turns out he was interested in Aiden’s dog the whole time. But Aiden was convinced he had a little friend at swimming, and that’s all that matters. The next day Aiden smiled as they sat together, their small feet dangling from the bleachers, Leapsters blinking away, Aah-Ooh nestled under their feet, and my heart swelled because he had a friend. After almost 5 years, he made a friend without his brothers being anywhere near him. His first, thanks to his wonder dog.

 

Chapter Two

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

 

 

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

 

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

 

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

 

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

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

"And I loved deeper and I spoke sweeter,

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

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

"To live like you were dyin'."

Like tomorrow was a gift,

And you got eternity,

To think about what you’d do with it.

An' what did you do with it?

An' what can I do with it?

An' what would I do with it?

 

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

 

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

Letting Go

Posted by Nicole on July 26, 2010 at 10:35 PM Comments comments (0)

Letting go. It can be so bittersweet for parents of typical children. You feel it the moment you wave to your kindergartener riding the bus for the first time, or when you drop your 7 year old off for their first basketball practice.. and don’t stay. It’s the feeling of elation as you give one last push and fall back to watch your child ride off down the block without their training wheels. Or the pull on your heart strings as you send him to school knowing he’s struggling with a friend, but needs to deal with it on his own. The “sweet” bubbles from your pride and their happiness, the bitter lingers from your feeling of not being quite as necessary as you were a few years ago. Letting go.

 

What I haven’t felt while letting go of Owen and Alec is the deep, raw, primal fear that something could go wrong in the blink of an eye. I realize this is one of those added bonuses of raising a child with no sense of danger and a life threatening medical condition. (Disclaimer: I don’t have a teenage driver, but I imagine what I’m about to discuss is fairly similar.) Letting go of Aiden feels so wrong in my gut, and so right at the same time. Actually, mostly wrong.

 

I watch him jump off the end of the dock (it’s more of a clumsy leap with a little shove from me to make sure he clears the dock, since he can’t quite jump yet), and my heart sinks to the same depths he does until he resurfaces in his lifejacket, flailing and grinning from ear to ear. My heart comes right back up with him, elated at his happiness. There’s the “sweet.”

 

Right about then my brain kicks in to panic mode: If he seizes… NOW!... how many seconds will it take me to jump in and be able to keep his face above water? What if it’s not just the drowning hazard, but a seizure that won’t stop? And though I’ve already run the calculations and decided he’s safer in the water and I should be on the dock (keeping him from slipping as he stumbles and injuring himself), I run it again every single time he jumps. Am I sure I’m more useful on the dock? There’s the “bitter,” seasoned with a little raw fear for good measure.

 

But he wants to do this. Desperately. Nothing in life makes him smile and squeal like the freedom the water brings. Imagine having trouble staying balanced and upright, then submersing yourself in an exhilaratingly cool body of water that magically erases the disability you silently face with each step on land. And 9 out of 10 times, he can do this. That’s what makes it mentally exhausting: You just never know when that 1 time will pop up, and it certainly wouldn’t be much of a quality life for him if we lived as if every time were that one.

 

When I’m there without Andy, I can only make it for about 3 hours before my heart and brain just can’t keep up anymore, and I shut down. I had a great day at the lake last week – Aiden did fantastically, the older boys swam like fish, and everything went smoothly. But I was ready to come home at 5:00. Not from the physical exhaustion of chasing him around, but from the constant worry. The walking up and down the dock around the other parents making sure I can see him and have a clear dive toward him in case something happens.  I realized I don't even have a cocktail at the lake anymore unless Andy is in charge because I need to be on my toes!

 

Here’s the kicker: I know it’s healthy to let him go. It’s best for both of us. But it is so entirely different from letting the other boys go that I silently nod, suddenly aware of how small my view of parenting was before I met Smoochie Bear.

Lexie/Interrupted

Posted by Nicole on July 20, 2010 at 4:34 PM Comments comments (0)

There have been far too many entries lately not concerning diapers or dogs, and since we’re happily watching the months whiz by in diapers I thought I’d mention the dog’s progress for a bit.

 

Here are a few tips about assistance dogs I’ve learned in the past year:

 

1. The “minimal standard” list from Assistance Dogs International is just that: minimal. It’s posted below in case you were curious, but know that there is SO much more involved than these routine tasks or behaviors.

 

2. On the “more involved” list would be suggestions like this: Don't loop the dog’s leash around the handle to the stroller, even for a second, even if you need two hands for something. Especially an empty stroller. Moving on.

 

police lights Pictures, Images and Photos

Ugh.  That would be the rotten seizure police again.  We'll be walking along, minding our own business (like writing an entry about Lexie, for example), and then BAM they nab us.  Apparently Aiden had just had too much fun today and they felt the need to stop him and write a ticket.  I suppose this is what life's like for him:  enjoying something, and the next thing he knows it's interrupted and he wakes up somewhere else feeling like he's been hit by a Mack truck.

 

Here's that "minimal standards" list I promised for those who are curious, and then I'm signing off to snuggle.  I'll tell you about the other dog tips I've learned and Lexie's progress now that Can Do Canines are working with us some other time.

1. Public appropriateness

• Dog is clean, well-groomed and does not have an offensive odor.

• Dog does not urinate or defecate in inappropriate locations.

 

2. Behavior

• Dog does not solicit attention, visit or annoy any member of the general public.

• Dog does not disrupt the normal course of business.

• Dog does not vocalize unnecessarily, i.e. barking, growling or whining.

• Dog shows no aggression towards people or other animals.

• Dog does not solicit or steal food or other items from the general public.

 

3. Training

• Dog is specifically trained to perform 3 or more tasks to mitigate aspects of the client's disability.

• Dog works calmly and quietly on harness, leash or other tether.

• Dog is able to perform its tasks in public.

• Dog must be able to lie quietly beside the handler without blocking aisles, doorways, etc.

• Dog is trained to urinate and defecate on command.

• Dog stays within 24" of its handler at all times unless the nature of a trained task requires it to be working at a greater distance.

Suburbia

Posted by Nicole on July 14, 2010 at 10:18 PM Comments comments (0)

Life in suburbia… Nothing compares. Forget the exotic beaches, the hustle and bustle, or the mountainous adventure: Cookie cutter, USA is where it’s at. I mean, how can you compete with our 0.3 acre parcel of Heaven complete with 2 dogs, 3 kids, and a stay at home mom? That must be the explanation for why life has just been so darn good this past week.

 

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Lake Fun.. And Dad's stolen hat

 

I feel like there are these amazing things to report, and then I write about them and realize that it is nothing special. No one wants to read about our stupid swimming sessions at the community center or the public access tests the assistance dog passes. But I suppose that’s the beauty of it: It’s nothing special! Life has been so gloriously normal this past week that I don’t have anything to say you haven’t thought yourself. Stick that in your pipe and smoke it, Karma.

 

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Tuckered Out

 

I have, however, had this nagging feeling this past week that maybe Aiden is actually… smart. Okay, not Einstein smart… Or even your average Joe smart… But maybe not as – um – fill-in-the-blank with a word mothers shouldn’t use to describe their own children- as we thought. True, he does try to injure/harm/drown himself often, and colors are just as elusive as ever. But there are slight improvements that make me wonder…

 

He had the lifeguards in a panic last week at the beach when I took him and Lexie swimming. Hundreds of swimmers at the lake and the lifeguard singles me out. “Ma’am, would you like a lifejacket for him?” There were 10 month olds running around with no lifejacket for Pete’s sake, but apparently she thought we might need one. Was it the fact that he tried to drown himself continuously for 20 minutes? Or was it the dog with the “Seizure Alert” patch trying to fish as he flopped around between us? I’m not sure. She later asked me if I’d like to let Lexie off her leash so I could keep both hands on Aiden. How sweet of her.

 

But the next day out at our family’s lake we tried the lifejacket-free wading session again. We’re desperately trying to teach him some sense of danger near the water and have failed miserably thus far. After a while, though, he didn’t go under quite as often. Andy got at least 10 seconds of reprieve between near-drownings.

 

And today, at the community center pool, I got the nerve up to remove his lifejacket after he’d remained seizure free for 30 minutes. Though he can’t swim, he’s not as far off as I thought. Who knew? (Let me mention here how insanely grateful I am that Owen and Alec can swim, and swim well now. I always thought life would get easier as Aiden got older because he’d grow out of the constant seizing. Hmm.. swing and a miss on that one. But it is easier thanks to my awesome grown up boys who don’t need as much supervision as they used to.)

 

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And his thoughts! So darn normal! For a 2 year old of course, but still: “Hooo-At?” for everything. “Hoo-At?” “That’s a fork, Sweetie.” “Hoo-At?” “That’s blue.” “Oh. Boo. Hoo At?” “That’s a car, Honey.” “Rrrmmmm.” And on, and on. And on.

 

These are real conversations – He wants to know things. Or at least, he wants us to talk to him. There may be more than one mouse running on that wheel up in his head after all. So yes, Andy and I are stuck in Suburbia. And yes, my life is just as mundane/trivial/downright boring as it sounds this week. But you have no idea how deep my feeling of gratitude runs just to be able to say that.

Unanswered Prayers

Posted by Nicole on July 7, 2010 at 10:46 PM Comments comments (1)

We are so infinitely, unknowingly blessed. We spent years hoping and praying Aiden would develop typically and be more aware of his environment. We prayed he’d have friends, that he’d learn appropriately, and develop relationships with peers.

 

We did not pray for obliviousness or for him to live in his own world. How fitting that we should count those qualities among our blessings now. When the other kids ask me to “Get Aiden away – He’s wrecking our things” or say, “Don’t let him play with that – it’s special” (the toy is undoubtedly plastic and not special in any way, shape, or form, by the way), he doesn’t dwell on the fact that he’s been singled out. He just keeps trying to play with everyone and fit in. He has the biggest, most innocent and forgiving heart I’ve ever seen.

 

Picture this: He’s at the McDonald’s PlayPlace alone without his protective older brothers, who are in school. I hear two boisterous boys above me saying, “Eeewww, he’s wearing a diaper! Diapers are for babies!” and say a quick prayer they’re not talking about Aiden. Though I know they are.

 

A few minutes go by and the boys become visible through a mesh screen in the tunnel above me. The older two are sitting in front of Aiden and ask, “What did you say to us? Are you dumb or something? You talk like a baby.” (Pointing to Aiden and yelling at a friend in a nearby tunnel): “The boy wearing the diaper can’t play with us.” My first instinct isn’t actually to climb up and deck these boys (which I feel like doing in retrospect), but rather to fly up, wrap my arms around Aiden, and tell him how smart he is. How proud I am that he was able to climb up and not have a seizure. How impressed I am that he was talking to other children. How glad I am that his face is with it and expressive, how I’ve dreamed of this day, of him being able to go to the PlayPlace and have fun.

 

They didn’t say anything more, so I was left with nothing to do but sadly survey the surrounding tables for their inattentive parents. I still don’t know whose children they were, but the likely culprits were the ones engrossed in cell phone conversations.

 

When Aiden came down I asked him if he talked to anyone, and he said “yes.” I asked if they were being nice or mean to him and he said, “nigh.” And I did wrap my arms around him and tell him how smart he was. I told him how proud I am of him and how he is my best little friend. I told him he was nice and such a big boy to climb all by himself.

 

Sometimes I think moms of children with autism or ASD have it harder than Andy and I do. True, Aiden is not as functional as they are. But on the flip side, their children feel the sting of exclusion and strive to fit in with their peers. At times like this I’m deeply grateful for Aiden’s obliviousness and realize how perfectly he was created. I didn’t know that the very qualities I prayed for would be the same ones that could cause him more pain and suffering, and that my unanswered prayers would be what maintain his happiness. It’s a good thing someone knows what He’s doing, because I clearly don’t!

Standards slide... I justify.

Posted by Nicole on June 29, 2010 at 9:52 AM Comments comments (2)

Oh, how quickly our standards can change. I used to take my stay-at-home mom job very seriously. I had always wanted to be a housewife, so when I was finally able to quit my job to raise our (then) two children, I felt I had to prove to Andy (and myself) that this was the right decision. That meant a warm, home-cooked meal on the table every night when he walked in the door to a clean house with clean laundry folded in his drawer and two cherub-looking children who had spent the day doing productive things like reading or learning their ABCs. I never took time away from our weekends for errands like grocery shopping, which should have been done during the week while Andy was at work. Now? I’m not quite as good at this stay-at-home thing.

 

Last night I did a double-take when I found myself pulling paper towels from the roll to use as plates so we wouldn’t have more dishes to do for… get this… pizza night. Not homemade pizza. Or even delivery. Frozen pizza. And I couldn’t pull out 5 plates. How lazy have I gotten? When your baby has a seizure at 4:00 in the afternoon and you spend the next hour and a half just holding him as he sleeps, which you only occasionally have time to do, 5:30 rolls around pretty quickly, and suddenly your husband walks in at 6:00 to no dinner on the table, a messy house that hasn’t had its last-minute-tidying session, laundry load #1 (of the planned 4) still in the dryer, a full dishwasher, and a lump of post-ictal child/mom on a blanket on the family room floor. I would do the same thing if I could all over again, but maybe a warning phone call to the husband was in order… Something like, “Why don’t you stop at happy hour or get your hair cut? You deserve some extra time away from us for all you do,” as I scurry around in a mad-dash attempt at defending my job title.

 

And cleanliness/cooking standards aren’t the only thing that have slid around here lately. When did 2 big seizures a week become standard operating procedure over here? I have been justifying it with all of the comments of “He’s doing SO well,” or “His speech is so clear lately,” and “His walking is so much more stable” we hear from others (who don’t watch him seize, incidentally, and only see the good), but honestly? I don’t know if I’m doing the right thing. We’ve cut his meds in half, and our little boy is returning from never-never land with each successive reduction. My plan was to reduce everything until frequency or severity increased so I could determine exactly what was unnecessary and what was helping him. And now that we’re here at that “frequency increased” checkpoint, it’s tough to dump more powder into his little medicine cup and watch our little boy slip back into his own world with no guarantee of reduced frequency again.

 

I can justify a lot. A messy house, time spent cuddling his unconscious limp body instead of cooking dinner, paper towels for plates. (Actually, I still feel pretty wasteful about that one. Let’s pretend it didn’t happen.) But can I justify the scrapes under his eye from falling on a branch in our yard as he seized yesterday? How many is too many? Alternatively, can I justify dumping more of the mind-numbing (literally) meds into his cup saying, “It’ll help you feel better” when clearly it doesn’t? Or at least, not most of the time? In case you thought I knew what I was doing... I don't.