Aiden's Journey

One Little Boy's Battle with Dravet Syndrome

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Tired, 8 years later

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

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

 

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

                                           manage to catch up on it during the day!)

 

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

 

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

 

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

 

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

 

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

 

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

Best. Christmas present. Ever.

Posted by Nicole on December 26, 2009 at 10:40 AM Comments comments (2)

Though our Christmas isn’t quite over, the favored presents are beginning to emerge. Andy and I must always be prepared for the older boys’ ambushes, as they hide behind doors with their high-tech Nerf guns at the ready, while squeals of delight are heard from downstairs as Smooch drives his train all around the house. I do mean squeals – I’ve never heard such pure, unabashed joy in his high pitched little voice.

And while Andy and I got a lot of wonderful presents, we received the greatest present ever yesterday afternoon, and it came with no box, no ribbon, and no gift receipt. We don’t even know how or why it happened. Aiden was able to spend over an hour outside yesterday in the beautiful white world the Christmas snowstorm left behind, without so much as an eye flutter.

It started out the way it usually does: Andy took all of them out as I was finishing reclaiming the house from the Christmas chaos, and I expected the door to open and Smooch to be dropped back inside at any moment. But after 10 minutes had passed, I bundled up and headed out to join my family. This was a victory in and of itself, since Smooch has usually been deposited back inside by then.

The neighbors across the street and their boys were out, too, as were all of the dogs, and there was a feeling of joy and lightheartedness in the air, complete with a “softening” of the boundaries, as the best snowbanks to hide behind are inevitably at the edge of the forbidden street. After a few minutes, an old fashioned neighborhood snowball fight erupted, with children and adults alike hurling the perfect snowballs at each other. Snow does not get any better than the heavy, thick, deep stuff that has fallen in the past 2 days! We spent over an hour outside, giggling, laughing, tackling, climbing, and building, and Aiden was completely with it and happy the entire time. Yes…. Happy. What a gift. Those of you who know him know that this is the best measure of his alertness: if he can express happiness and smile, he is feeling good.

I have been praying for a better Christmas this year than last year for him. I’m pretty sure he has no recollection of either Christmas last year, as he was so out of it and jerky that he fell into a post-ictal sleep in my arms while opening presents. It was tough, and all year I’ve wondered how many Christmases he will miss because of this rotten syndrome. But I never dreamed of such health and clarity of mind to be able to spend time outside. Outside. On a cloudy day. In the middle of a world of white snow. Throwing snowballs, trudging around through a snow fort and drifts 4 feet high. And get this: he didn’t even need his glasses.

We will likely never understand this disease, or why he has bad days and good days. My scientist mind is constantly trying to reproduce his good days and pin down what went wrong on the bad days, down to what we were all wearing in case there was some pattern on one of our shirts that offended him. And we’ll never understand why we were blessed with such an amazing time of family togetherness outside yesterday. But sometimes the best gifts are unexpected and unexplained.

 

 

Merry Christmas, Smooch. What a reminder of the meaning behind Christmas: new life, straight from Heaven above.

Sit still, and be still

Posted by Nicole on December 17, 2009 at 11:01 PM Comments comments (1)

My to-do list probably resembles yours right about now: spilling on to the second page with Christmas cards, shopping, church activities, cookies, and hosting duties. December is a wonderful, busy time, but it seems that amidst the tasks we place on our plates, we forget how to sit still. Even more of us forget how to be still. I fully admit my fault in this area.

 

I had today planned out down to the minute based on my to-do list, and that master plan definitely did not include sitting in the nurse’s office for an hour and a half while Aiden slept off a seizure at school. I got… wait for it… 6 minutes of free time (6 minutes! All day!) before his aide nodded to me as she whisked him from the classroom to the nurse’s office. (This aide deserves sainthood, by the way. I get tired just watching her try to wrangle Aiden from one place to another in the classroom. I may kidnap her and take her to elementary school when the time comes.) I spent the next 90 minutes sitting in the dark nurse’s office accomplishing absolutely nothing. But… It was calming to just sit still. I watched Aiden sleep, thought about the family of the sweet 2 year old Dravet child who passed away in her sleep this morning, and was grateful for the gift of time: More time with Aiden, and mandatory time to stop, sit still, and be still.

 

My mom (another saint who surprises me with her skills at perceiving when her “services” may be of value) called during that time and offered to come to my house after school to watch the boys so I could get some errands done. I quickly calculated exactly how many tasks I could check off my to-do list during the hour or two I could leave Smooch.

 

But, did I mention how he likes to replan things? It turns out the nap and Diastat at school didn’t quite fix the problem, and he was too unstable to leave with Mom, so I went upstairs and laid down with him, my mind again returning to the family of little Abby and the surreal day they are living. Do you know what? Those ever-elusive checkmarks on my list did not enter my mind once. The afternoon wore on, he needed more Diastat, slept it off in my arms on the couch some more, and only now (at 9:30 at night) are those checkmarks beginning to creep back into my head. They may actually be dancing and mocking me up there, but I am at ease with it.

 

 

Smooch has a way of slowing me down. He slows me down physically, obviously, but he manages to do it mentally, too. Apparently I wasn’t picking up on the little signs God was sending me, and He had to lay a seizing child smack down in front of me to get me to stop. There’s a difference between sitting still (everyone does that just before bed, or during lunch, or in the car) and being still. When you are truly still, the to-do list slinks into the back of your mind as if it fears you may discover its true lack of importance, and the issues that matter take center stage. Faith, family, love, time together. These are gifts that can be retracted at any given moment, when we least expect it. If only for today, I have been still, and grateful.

The Magic of Santa

Posted by Nicole on December 10, 2009 at 8:42 PM Comments comments (2)

It’s amazing that while the small things can throw us off balance in a bad way, it is also the small things that have become the most fulfilling. I do start to wobble when I am around typical children of Aiden’s age and they are doing some ridiculously advanced task, like pointing out letters or even colors. But at the same time, I’m caught breathless at the strangest times, when Aiden is doing something small and not necessarily outstanding.

 

Last night, for example, Andy was at school and the boys and I were watching “Santa Claus is Coming to Town.” You know the one – old claymation with a Winter Warlock who melts in jagged frame-shifting spurts. I didn’t think much of it – I was grading papers as the boys were watching – until the end, when Aiden looked at me confused and I realized I had never told him the story of Santa. Or I had, years ago, when I thought he understood, but hadn’t lately since I didn’t think he would understand. His eyes got so big and wild when I asked him what he wanted Santa to bring him for Christmas. It was a train, of course. And he kept telling me Santa was coming all night.

 

So today I took him to see Santa Clause at the mall. I haven’t taken him to see Santa since he was a newborn. That was the only Christmas he had untainted by seizures. The flashing lights, the excitement, the fear, the fluorescent lights – all spelled trouble. But he was genuinely excited about Santa, so off we went. I was nervous. What would Santa think? Would he have a seizure right on his lap? Would he be having a smaller, subtle seizure the entire time and Santa wouldn’t know what to do with him? Would Santa be understanding? Would the camera lights cause a seizure? Would he even remember? Would I cry thinking about how this is supposed to be such an easy, fun, heartwarming experience?

 

When we got there, he watched the children in front of him get on Santa’s lap. As usual, the children half his age (2 year olds) stared at the gigantic “big boy” with sunglasses sitting in a stroller while they confidently and sturdily walked around, exploring Santa’s workshop. He was out of it, but not entirely gone, and tried to say something to one of the girls ahead of us. She cowered behind her mother’s leg. I was beginning to think maybe this wasn’t such a good idea.

 

When our turn came and I discovered there was no flashless camera option, I discreetly asked the elves not to take a picture. The children behind us in line (and their parents) stared as Aiden got out of the stroller and stumbled over to Santa. He fell once, but slowly got back up and signed, “train” while saying, “Doo-doo.” My heart was breaking for Aiden and the difficulty he had in getting there, falling, and making his small request. It came right from his heart: This was Santa, and if he could just get there and make him understand that he wanted a train (how frustrating must that be to never know if people are going to understand what you want!), then a train would appear. How many times had I been through this before? The biggest fear I’d ever had was that – Heaven forbid – my boys would get scared and just stand next to Santa rather than sit on his lap. How could I have ever even worried about that before?

 

My eyes were welling up with the complexity of the situation when the most amazing thing happened. Santa leaned over, pushed his glasses down his nose, and signed, “Play trains together” to Aiden. He spoke as well, asking if he could play with Aiden’s train a bit before he brought it to him so he could make sure it worked. His heart was so tender; He was so warm and gentle, and he saw right past Aiden’s inability to walk or speak. He saw right through the sunglasses and spoke to Aiden, the little boy. The little boy who just wanted a train. Aiden was too out of it to smile, but he gave Santa a big hug and I saw the most genuine smile spread across this man’s face. You know the kind – where you can tell he’s smiling just by looking at his eyes. He probably saw 150 children today, but the smile he had when Aiden hugged him was special, and he took a deep breath and said, “Bless you little one.”

 

I’ll never have a photo to show him sitting on Santa’s lap. Actually, he never got to his lap. And he may well be sitting on Santa’s lap when he’s 15. But this was one of those times when a photo wouldn’t have done it justice anyways. It’s much better in my mind, where it has an orange-yellow glow and my breath skips a bit just lighting on it. The little things just leave me breathless sometimes.

Top Ten

Posted by Nicole on December 7, 2009 at 2:53 PM Comments comments (0)

As promised, and in honor of the last month of the year, here are theTop Ten things I’ve learned for or from Smooch that I never thought I’d know, somewhat in relative order of importance:

 

10. How to read a medical lab report. (And request the right tests from the lab in the future, even if the medicine level requested isn’t on their list of possible tests. Just say, “Run it on the HPLC as a benzodiazepine.”;) In fact, let’s lump “very basic knowledge of how to read an EEG and EKG” in with this one – the more the merrier.) And “very basic knowledge of how to operate home medical equipment.” (IV sites, pulse oximeters, oxygen masks and tanks.) More than I ever thought I’d know!

 

9. How to calculate and weigh food, supplements, and medication for any diet you might like to try. Want Gluten free? No problem. Dairy free? Here you go! Dye, preservative, artificial sweetener, additive free? Carbohydrate free? (And is that with a 3:1, 2:1, or 1:1 fat: protein/carb ratio?) Low glycemic index? Here’s what you do. We’re changing the medication from 500mg to 400mg but there’s no way for the pharmacy to change the dose? Okay – we’ll just weigh it out ourselves!

 

A day in the life of Aiden!

 

 

8. How to get medication from France and Canada imported through customs, paid for in Euros, and reimbursed by insurance.

 

7. How to discern between missense, nonsense, deletion, insertion, truncation, de novo, somatic, mosaic, intronic, and exonic mutations. Let’s just throw in discerning between speech, occupational, physical, and feeding therapy. Heck, why not add in all of Aiden’s seizure types: generalized tonic-clonic, hemiclonic, atonic, myoclonic, absence, atypical absence, complex partial, simple partial, etc. And for good measure the syndromes associated with these seizures: GEFS+, ICEGTC, LKS, LGS, DS, etc. Holland really does have its own language!

 

6. Speaking of language: Regardless of the question, “Guh wahee?” (Aiden speak for “Cause why?”;) is the perfect answer. This is best expressed with a raise of the eyebrows and a cock of the head. “Aiden, why did you lick all of the dishwashing soap out of the dishwasher?” “Guh wahee?” See? It really is the perfect answer.

 

5. It’s better to find the nearest exit than to administer Diastat on the side of the freeway. Even better is finding a nice side road on to which you can turn. Any of these options works, however. Make sure you note the street sign, though, as the ambulance will need it to find you. At this point, it works best if you can squeeze yourself into the now-unoccupied carseat. It also makes for extreme confusion and surprise on the face of the person who finds you. Either way, the police are much more understanding after they realize what you’ve done. And don’t worry about siblings being scared – they just love this stuff. FYI: Policemen really do babysit when necessary. They will, indeed, wait with older children for Dad to arrive while you ride in the ambulance with the little one. How many of your babysitters have radios, badges, lights, sirens, and guns? Nope, didn’t think so. And you thought Owen and Alec were deprived. Ha!

 

4. Though some people may give you a nasty look, on the really bad days it’s best to actually use the handicapped parking tag and get the prince indoors and out of the cloud-ridden light as fast as possible. If anyone asks rudely which one of you is disabled, politely explain that it’s you. That’s how you’re able to carry a 40 pound four year old across the parking lot and still have the energy (and breath) to stop and explain your situation to those who feel the need to ask. If they continue to press, lift up Smooch’s glasses and explain that his eyes rolled up like that is a type of seizure, caused by spending too long in the sunlight while his mom talks to strangers. Thank them for their time and be on your way. Unless there is only one handicapped space left, in which case someone else really may need it more, and running from a regular spot with said 40 lb four year old counts as a workout.

 

3. 4 year olds still make the short-breathed gasps newborns do as they pause in sleep.

 

2. Good neighbors who are willing to run over and babysit in the middle of the night are priceless. Their offers to help are not hollow. Family members willing to drive down to relieve said neighbors are also priceless.

 

1. No matter how hard this is, or how much more I have to learn, there are many grieving parents out there who would give their souls for one more day with their Dravet child, even if it were just one of our “bad” days. And I wouldn’t trade ANY day with Aiden for the world.

 

A day in the life of me!  Getting to see his smile almost every day and feeling his warm hands around my neck make the rest of this crud worth it!

Ear infections, antibiotics, and dogs

Posted by Nicole on December 2, 2009 at 10:40 PM Comments comments (0)

So I had this whole entry written out last night about the top ten things Smooch has taught me. Unfortunately I have to add one in because I forgot that he taught me how to be flexible!

 

Today’s concerns have only to do with today. There was a great verse at Moms In Touch on Monday to the effect of “Today’s worries are enough for today. Rest and don't fret about tomorrow's.” It’s my new mantra this week.

 

Have I mentioned how much I love diapers lately? No, I mean I really love them. I may sometimes look longingly at the other children in Aiden’s class in their well-fitting pants lacking the telltale paper strip sticking out of the back as they drive their trucks around, but my heart belongs to diapers. The good news is that Aiden has an ear infection. Praise the Lord! That means his rough patch last week wasn’t our crash back to reality after a brief honeymoon on stiripentol, but rather just him getting sick. This is his 2nd ear infection in 2 months, but he hasn’t even had a major seizure yet! (I’m now frantically searching for wood to knock on.)

 

The bad news is that colds bring ear infections, ear infections bring antibiotics, and antibiotics bring… how shall I put this delicately?... constant soupiness. The dog has it too. And Andy’s out of town this week. I was seriously considering slapping one of those babies on the dog last night to get a few extra hours of sleep. But this is about Aiden.

 

Did I mention my love of diapers? I was reminded again today that Smooch is exactly where he needs to be right now. In diapers. He has so many stresses in his little life, so many bodily things he can’t control, and this is one thing I can help him with. Imagine having your vision go cloudy every few minutes, the world spinning, your entire upper torso being shocked and jerking quickly, and not being able to control it. Poor little guy. So I am toasting Marion Donovan tonight, the inventor of disposable diapers, and thanking her for taking one stress away from my baby and me. If you’re still reading, you are probably a mom. Most dads do not appreciate entire essays on diapers, so I apologize to any males reading this. It may not be glamorous, but it's real.  God loves those who roll up their sleeves and do the dirty work :)

A quickie - He's tough. Again.

Posted by Nicole on November 24, 2009 at 8:40 PM Comments comments (0)

This isn't a full blog entry, since you've all heard me drone on about how tough Aiden is.  But here's a visual testament as he not only endures, but shows off his Holter monitor.  The kid was in tears earlier because the stickers are pulling on his skin, but is still able to smile about his "backpack."  (Imagine belly diving off the couch with 6 industrial grade stickers pulling on the wires you're trying to leave behind... Now you've got it.)  And times like this make us grateful fo his lack of speech - not once has he asked when it will come off, like most 4 year olds would :)

 

 

 

 

True, he pulled 3 electrodes off within 3 hours of getting the monitor on, but not one has been yanked off in the 24 hours since...  And he only says, "Oww" every now and then. (The skin around those stickers is an awful shade of pink, so I can't blame him there.  The tape is no problem - the gel filled stickers under the electrodes are the beasts.) 

 

And, of course, this wouldn't be complete without a shot of his brothers who deserve some attention too.  I'd make some lame excuse like "No, he's not in the middle of tackling Owen - they're hugging.  Isn't it sweet?"  But we all know better, and this is exactly how our last 2 days have gone.  They are on their 2nd day of Thanksgiving break and I fear I haven't been giving enough credit to school, gym, and recess.  There may be a lack of physical activity in the house...

 

 

"Well-Child" Visits

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

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

 

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

 

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

 

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

 

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

 

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

 

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

Three's a crowd. Or not.

Posted by Nicole on November 17, 2009 at 10:31 AM Comments comments (0)

Some people ask how Andy and I keep our marriage strong and cope with Aiden and his condition. We’ve certainly fooled them – little do they know we’re just flying by the seat of our pants, doing our best in this crazy thing called parenting like everyone else! But we do have a few rituals and traditions we try to keep sacred to ensure we still enjoy each other’s company. Sure, we hear people say, “Oh, we got a babysitter and went…” or, “We took the family to ____ and the kids played…” or, “The kids were at…,” but our breaks have two distinct differences. First, nine out of ten times they do not involve babysitters because we only have two: Grandma Mar and Grandma Marilyn. (We are eternally grateful for your help Grandmas! But you can only abuse family so much.)

 

Second, we do not go anywhere as a family. There is no stopping by McDonalds and letting the kids run off some steam in the PlayPlace, no picnics at the playground, no pumpkin patches, zoos, or museums. Crowds, public, excitement, and running make Aiden seize, which is no fun for any of us. Trust us: we’ve tried.

 

So what do we do? Well, after the deep, obvious things like spirituality and love, we have two main coping mechanisms: tv and alcohol. (Just kidding about that second one… mostly.) Just like Aiden is addicted to his Dora and Diego shows, Andy and I have a few we follow religiously: Entourage, The Hills, Glee, Survivor, House, The Real World.  It's true - they all involve beautiful people and require no mental capacity whatsoever to watch. (Except for House, which we lighten up by making bets on how long it’ll take for his patient to have a seizure, because to most people seizures are mysterious, scary, and make for great medical drama. It's usually 10-15 minutes into the episode.) But we keep the shows light because honestly, at the end of the day, we don’t want to think about anything deeper than whether or not Heidi Montag looked better with real hair or extensions. (Is there really any question?  She seems to be channeling her inner lion.)

 

We also make special snacks for our tv time, usually popcorn or nachos, and enjoy a drink. It sounds pretty mundane and normal so far, right? You probably do the same thing at your house. But the funny thing about our ritual is that for the past 7 months or so, it’s involved a squirmy 3 1/2 foot creature in snuggly fleece jammies. We finally gave up on trying to get him to sleep before he’s tired (which, on heavy seizure and/or nap days, means anywhere from 11pm-1am). I think he knows when he’s going to be allowed up because he has this look on his face like, “See ya, brothers! I’m headed back downstairs!”

 

He’ll come thumping down the stairs shortly after the older ones start reading and sign “popcorn,” then climb up on the couch with the widest grin and settle in. He squirms, kicks, and climbs, and it is… well... less than romantic. I’ll admit it: Sometimes we look at each other and long for the normalcy of a real bedtime, thinking about other couples who are enjoying their “adult time.” But he’s also at his best at night, when his meds from the morning and afternoon have worn off. He is so much more alert and with it that Andy and I secretly enjoy getting to know the real Aiden during this time. (As I write this I’m picturing last night, when he was sporting his favorite red stocking cap, one red glove Michael Jackson style, and stumbling around trying to kick a ball. Yes, trying. It’s like watching a pinball machine – you never know which direction the ball (or Aiden for that matter) is going to go.)

 

So our breaks are really just treats to ourselves, I suppose. But setting that time aside when we are not trying to accommodate Aiden somehow and are not trying to make sure the other boys lead a normal life is our break. A small indulgence to look forward to each day, adapted for our odd, housebound situation. Two may be company in other households and three may be a crowd sometimes, but in the end, we’re in this together. All of us.

Happy 4th Birthday!

Posted by Nicole on November 11, 2009 at 9:46 AM Comments comments (0)

Happy birthday Smooch!

 

Today you turn 4 years old.  Such a big boy!  Every year your little body gets longer and your feet creep out of your old shoes, stepping into other pairs your brothers have recently left behind.  But your heart stays as pure and innocent as a baby's.  Your transparency is so refreshing:  In all of the cakes I've made over the years for birthdays, I've never had a helper as involved as you were last night.  Sheer excitement and enjoyment over a cake.  A cake! And not a professional one with plastic figurines or fancy icing.  It doesn't even require batteries!

 

 

 

 

You just couldn't help yourself from touching, poking, rolling, prodding, and squeezing, dyeing, and I may have been mad if you hadn't had such an excited smile on your face the whole time.  Okay, I did yell once at the end when you poked your little finger right through Chick Hicks's side and smeared his numbers, but once out of a few hours is almost negligible in terms of yelling, right?  Never has anyone stood on the stool for the entire process.  Alec has watched with his dimply grin for an hour or so, and Owen usually prefers licking bowls and admiring the finished product, but you?  You were there from start to finish.  I know you had trouble understanding how the blob of yellow cake frosted once with white buttercream was going to end up as a car.  Who are we kidding?  So did I.  And your dad had his usual skeptical face on.  But when you saw the green frosting your eyes lit up and I could see the wheels turning. 

 

 

 

 

So this cake is for you, Smooch.  I didn't think you'd appreciate it as much as your brothers do given your...um... inattention to details, but you suprised me again.  You'd think I'd be used to that by now.  Happy Birthday Smooch! 

 

 

The size of the fight..

Posted by Nicole on November 8, 2009 at 3:48 PM Comments comments (0)

Andy is one of the strongest people I know. He can lift crazy things, but isn’t exactly hulking. If you saw him in all his wiry, spindly glory back in junior high you’d be amazed that he can now bench press over 200 pounds. He'd never admit it, but I think we weighed about the same back then. He works hard at it… perhaps too hard sometimes. No, scratch that. I’m clearly just jealous of his dedication. He’s the go-to guy when someone needs help moving furniture or wrestling countertops into place, and I love hearing the escapades from his Saturday morning football games.

 

His third born?  Well, that's another story. Hypotonia (low muscle tone) is part of his condition. It’s true: He can get up some serious momentum and ram into his brothers, even knocking them down if he’s low enough. And trust me - This is a daily occurrence. But he really isn’t very strong physically. The kid can’t walk more than 20 feet without being winded, and couldn’t do a sit up to save his life.

 

What’s the saying? “The size of the fight is inversely proportional to the size of the kid?” Then Aiden must weigh about 5 pounds. We were just outside on this beautiful November Sunday for about 10 minutes, and no matter how obviously out of it Smooch was, he fought through the sickness and said, “agee” when asked if he felt alright. (Picture his mouth hanging slightly open and you’ve got the idea.) I ended up carrying him in, jerking and barely conscious in my arms, because he made it clear he was not going in on his own. He was out to play, and woe to anyone who tried to stop him! We’re both now happily watching... You guessed it! Go Diego Go!

 

How can he be so darn strong? He doesn’t cry in pain. He cried only once after a spinal tap even though he walked hunched over in obvious pain for nearly a week afterward. You can draw this kid’s blood and he just watches, exclaiming, “bubbo” if he sees a bubble in the tube. He never complains about feeling sick, never gets discouraged by his limitations, and is disappointed but not jealous when others are allowed to do things he can’t. You can’t train that kind of strength on your own. You can’t “work up to it.” There’s no lifting log, trainer, or fancy gym membership that will ever make you mentally strong. It’s something that comes from within, and I respect him so much for it. He is the model of acceptance, strength, perseverance, and tenacity. I am amazed by him daily and proud of him hourly.

Horses, balance beams, and klutziness

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

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

 

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

 

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

 

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

 

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

 

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

The fall from a high horse is hard

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

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

 

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

 

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

 

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

 

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

 

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

 

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

We've landed!

Posted by Nicole on November 2, 2009 at 5:09 PM Comments comments (0)

Smooch, this is for you.  We've all read the poem, we've all cried the tears.  But it captures the emotions I feel every time  I look at you better than anything I could write myself, and it's so appropriate for my first introduction of you to the world.  So here goes.

 

"WELCOME TO HOLLAND"

by

Emily Perl Kingsley.

c1987 by Emily Perl Kingsley. All rights reserved

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

 

So there you have it, Smooch.  Owen and Alec may travel off to Italy for vacations here and there, but we're all here with you.  In Holland.   And it's slower, quieter, fulfilling, and more beautiful than I could ever have imagined.  No matter how scary and sometimes confining it can be, I hope I never, ever leave Holland.