Journey

I haven't been writing. 

Well, that's not accurate, I have been writing. Just not on the blog. I've been busy writing on Facebook, and Internet forums, and writing a book of sorts about money management. That one started as a project for a family member to tell them everything I wish someone had told us 10 years ago, and it kinda morphed from there. I've been writing out assignments for my kids and copywork for them to copy. I've been filling out forms. I've been writing the stories my kids dictate to me, to capture their beautiful, vivid imaginations in this moment of time. I've been writing emails and lots and lots and lots of texts. 

At the end of the day, I've been writing a lot of nothing. Which in my mind, equates to not writing. 

Why is it important that I write? Besides the fact that I can rarely form a coherent sentence these days, there is something immensely satisfying about writing that I don't get from any other medium. Part of that, I suppose, is because I'm such a visual person; there's something about seeing the words on a page that I find gratifying. Something that is beyond even what I feel when I play a sonata well on the piano. 

It's important that I write because it captures my life. Moments are quickly forgotten, and having this blog has proven invaluable for me to reflect on our journey. Details about Abby's illness that I've forgotten 10 years on (even when, as they occur, you don't think you'll ever forget them). Episodes in my children's lives that fade from memory. Reflections of my state of mind and soul at any particular moment. 

In short, it's all about the journey. 

Absence

Abby's epilepsy has been relatively stable for a number of years. The last time the apple cart was upset in a major way was about a year and a half ago, when the switched generics on us for one of the anti-seizure meds. 

In that particular case, the new generic was absorbed at almost double the rate of the old generic, making her trough level skyrocket to over 60. It should be below 30. She had numerous seizures as a result, as well as a resurgence of migraines and facial tics, both of which hadn't bothered her in well over a year at that point. 

Since then, we seem to have settled into a relatively livable pattern of one complex-partial seizure about every three months. And actually, she hadn't had a seizure at all, as far as we know (always tricky to know what's going on when communication is such an issue) in about six months. 

Today, the phone rang. 

 

I always loathe when my phone rings, and I see on my call display "School Division". Something is usually wrong, although there are always exceptions. 

Today wasn't the exception. 

The teacher explained to me that Abby had an absence seizure. We haven't had an absence seizure in a looooong time... probably since she was about 16 or 17 months old and started transitioning from the infantile spasms to the complex partials. I asked some questions, and from what I could remember is sure sounded like an absence seizure, albeit a long one at 45 seconds. 

Second-guessing myself, I check epilepsy.com  just to make sure I was remembering the ins-and-outs of seizure types correctly. Then I called the school back and asked a bunch more questions. 

Was she responsive? No

Did she chew, which she typically did for complex partials? No

Did she come out of it gradually or abruptly? Abruptly

Did she seem aware of what just happened? No

Walked like a duck, talked like a duck.... 

 
 I didn't know what it meant. Do seizure types change? 

The answer.... dah dah dah dah!... is YES!

I called Dr. E. I love that man. I'll be lost when he retires in the next couple of years. Anyway, he explained that it's very common that as these kids approach puberty that the changing hormones can dramatically alter both seizure patterns and types. It can be rough. His advice was just to wait, watch and keep track of things. 

 See, now here I've been worried about the puberty and Autism thing. You know, teaching her to wear a bra, menstruation, the mood swings, all that fun stuff. 

That, somehow, suddenly seems simply compared to the prospect of managing an ever-changing epilepsy through the teen years.

Damn the Devil

So, it happened. 


Yep. 


It sure did. 


























Our appointment with Dr. E went well. If by well, I mean that he told me to totally ignore neurology and go back up on her meds because he figures she's having sub-clinical seizures, which would account for every. single. weird. thing. we've seen in recent weeks, then it truly was an excellent appointment.  


Yay. 


Disappointing, but in my gut I know he's right. I knew that was probably the case weeks ago when we started noting the behaviour. I even thought I maybe saw the tail end of seizure a couple of weeks ago, but chalked it up to my overactive imagination. 


Yep.


So we go home. And she promptly has a seizure. 


Damn. 


The good news? We haven't seen another one since Thursday night when this all occurred. Mind you, we've been dealing with Abby having the stomach flu, Joseph starting to crawl and discovering just how un-baby-proofed our house has become, and now Rachael having said same stomach flu. So we might have missed it. They're pretty subtle. 


Wait and see. 


Wait and see. 


Damn. 

Anger

Or was it frustration? 



Either way, I'm upset. My Abby, my beautiful, wonderful, happy child has turned into a demon-monster. She was doing well in school. She was doing well at home. We were so happy as a family, had a good rhythm going, and was actually at the point were we could live a semi-normal existence. You know, one where you get to leave the house and do stuff with your kids. And they sort of cooperate.



And suddenly... poof!... she was no more. 


Now she's aggressive, unhappy, uncooperative. She hits the other kids. She repeats words for 45 minutes or more at a time. She's unable to cope with loud noises, engages in self-stimulating behaviours, and whole nine yards. 

*sigh*


Talked to doctor. He says it might be neurological. We've been cutting back one of her meds, with the hopes of weaning her off one (she's been almost 2 years since a seizure).


Talk to neuro. No, no, no, they insist. It must be physical. Don't worry about it. Keep tapering her meds. 


So back off to Dr. E we go. I've got five pages (2 from teacher, 3 from me) outlining her changed behaviour. In a small font. Including her attacking another kid with scissors today. 


*sigh*


I hate this merry-go-round. 


Have I mentioned that Autism sucks??

Four Things

Okay, so here's the "other stuff". 

1. We got Abby's allergy testing back. In addition to her pork, blueberry, sesame and sweet potato allergies, and in addition to her casein (for sure) and gluten (suspected, although we're still in the "trial" phase) intolerances, we have discovered that she's also allergic to soy and eggs. That has seriously narrowed our food choices... yet again.  

All the poor kid wants is a glass of chocolate soy milk, real toast with butter and McDonald's french fries. All of which are off limits.  

2. We tried the Neti Pot. She was okay with it for about the first ten seconds until she caught on to what I was doing. Then she wasn't so okay with it. 

It seems to have helped, however. We'll keep at 'er for a few days, twice a day, and see what happens. 

3.  I forgot to give her her afternoon dose of anti-seizure meds yesterday. Ooops. She seemed to be fine, however. Actually, better than fine. She was feeling happy and smiling in the evening. Connection? 

Michael and I have discussed cutting back on her meds. We're undecided what to do. We don't think it was the meds that mysteriously made her stop having seizures back in April and we're wondering how much the meds are affecting her physically and mentally. 

I guess what I would really like is to talk to the neurologist about it, and not her lacky-nurse-clinicians who automatically say "no" to everything I propose. *snorts* Good luck getting Dr. B on the phone, however. And Dr. E, the pediatrician is away on holidays. 

4. Canning season has begun!  I procured a mess of rhubarb from the first outdoor Farmer's Market of the season, and proceeded to can rhubarb marmalade and rhubarb syrup. 

The marmalade was ridiculously easy and insanely delicious. We've already eaten a jar. The syrup is delicious mixed with soda water or carbonated spring water for a refreshing "home made", old-fashioned soda. Kinda sweet and kinda tart. Or add a bit to your iced tea! 

Okay, I lied. There's five things. 

5. Still undecided as to the fate of ABA. Abby is obviously unhappy, and the tutors are frustrated. The consultant, bless her soul, is trying her best to resolve this, but deep down I have suspicions that it may be unresolvable at this point. We've got three weeks until my self-appointed deadline to stay in or get out of the program. 

There's a lot more to this story, and I will post it down the road when I know how the story ends.  

Procrastinating, Impetigo, The Best Part and Pandemonium

Okay, so I've been ignoring the blog. I just checked my Google Reader and cringed that I have 558 posts to read from the various blogs I follow. Ha ha ha ha ha ha ha ha ha.... That's what I get for procrastinating.

Abby is doing better. The identity of her mystery illness was never discovered, but she seems to be mostly over it now. We've gone from sleeping 16 hours days to barely sleeping 8 or 9 a lot of nights.

::sigh::

But she's happy, giggly, skips through the house, puts her feet in my face and demands I place the "stinky feet" game (she gleefully chants "key-key, key-key" over and over again). Apparently, 8 or 9 hours seems to be enough sleep for now. I just can do without the 5 a.m. wake ups.

The mystery rash? Impetigo. Her sister caught it too.

Oh! And I didn't even tell you the best part!!!!!

As mysteriously as her seizures started in December, they quit on April 23. None since then. Nothing. Nada.

So now I'm very convinced that this whole winter and spring of seizures-sinusinfections-liverishsymptoms-malaise-sleepingsickness is all related. To what, I haven't a clue, but I guess I won't dwell on it too much as long as she gets better.

That's all I gots energy for. Gotta get to bed before the 5 a.m. wake up call. We tuckered the kids out at the Y tonight, so maybe they'll let us sleep in tomorrow.  (It was awesome. Fourty-five minutes in the pool followed by another 45 minutes of utter pandemonium in the gym with screaming children, tricycles, a giant pirate-ship bouncer and kid-sized shopping carts filled with basketballs. Oh, did I mention the pirate-ship bouncer?)

Oh, and On a Happier Note...

We have officially gone 10 days with no seizure!!!! With a reduction in anti-seizure meds yet!

Abby is slowly getting better. I'm convinced the nutritional supplements are helping. However, she now has a weird rash on her leg that Dr. E says is allergy, but my own research suggests may be her body trying to detox.

After much hemming and hawing, it's been (un)officially decided that Abby has does have something weird going on with her liver, unrelated to her VPA, not showing up on her ALTs, not causing jaundice, but obviously effecting her systemically. We were sent home from the doctor's office with instructions to "keep doing whatever it is you're doing, as it seems to be working".

::sigh::

Question and Answer

When your child has a "condition", especially idiopathic ones, you inevitably look inward for causes. You can't help it.

Did I eat the wrong things when I was pregnant? 

Too much fish? Not enough fish?

Did I breathe in too much second-hand smoke? 

Too much time in the sun? 

Did I sleep on my left side like I was supposed to? Or was it my right? 

Was something wrong at birth and I just didn't see it?

Should I have let you get that vaccine? 

Is our water no good? Is it poisoning you? 

Should I have fed you the barley cereal before the wheat one? 

Am I letting you sit too close to the T. V.?

In short, I keep asking myself: Did I do this to you? 

I have often wondered that. Did I break her? I've come to believe, after these few long years, that Abby's epilepsy is a symptom of something larger that's been damaged inside her. I also firmly believe that there are environmental and genetic components to her difficulties.

Recently, I've also began understanding the Autism as part of the same damage, something malfunctioning that is causing these symptoms to bubble to the surface. In my mind, they must be linked, as part of the same parcel.

I have often wondered, in these years, if my taking Celexa during my first trimester of pregnancy had any role. At the time, I was tapering off my dose slowly when I discovered I was pregnant, as I had been taking it earlier that same year to treat a depressive episode. My physician at the time agreed that I should continue tapering the drug, as there was no significant risks known for continuing the take the medication in my first trimester. At the time, it was also thought that Celexa raised the risk of birth defects and it was recommended that it should be stopped before the start of the third trimester. I was done with Celexa by my 12th week of pregnancy.

That thought, that me taking the Celexa during early pregnancy could have played a role in her "condition", has secretly haunted me. It's why I refused medication when I was pregnant with Rachael even though I was suffering panic attacks. It's also why I've refused to take medications for a chronic, low-level depression that has continued to plague me since her birth. Not only do these medications cross the blood-placental barrier, it infiltrates the plasma in the breastmilk.

No one could tell me whether or not I broke one child. No one could force me to break another.

I was reading something totally unrelated today, and I found myself today wondering if anyone else asked that same question about antidepressants. Did anyone else feel the same way? So I asked Dr. Google. 

Click here for an answer.

Frustration

We thought she was getting better for a few days, but then she's gotten worse again. She slept 13 hours last night, work up at 10 this morning, but has been asleep again since 11:15 (it's now almost 1:15). She picked at her breakfast. I'm going to weigh her again when she wakes up, as I suspect she's lost more weight.

Keep us in your prayers.

Two Things

Thing One: 

Abby is (I hope) finally on the mend. After much reading, compiling information and yet another doctor's appointment, it was finally (unofficially, of course) concluded that Abby may have a systemic candida overgrowth, possibly from the five courses of antibiotics she had in the space of six months (three of which were heavy-duty trying to clear a sinus infection that wouldn't die).

I had already suspected a couple of weeks ago that she was probably suffering from malnutrition for a variety of reasons (something the doctor pooh-poohed initially), but giving her a good-quality multivitamin and some almond milk every day has seemed to help. We also started probiotic drops today too. Of course, this is all very par for the course if your child is being treated by a DAN! doctor, but most mainstream medical practitioners won't really give these issues the time of day. Good old doc, bless his soul, was unhappy to admit it certainly was a possibility and was better than any theory he had about her mysterious illness.

Anyway, this only strengthens my resolve to carry on with our plans to pursue treatment using a naturopath to help improve her overall health status. Not that I'm expecting her epilepsy or Autism to be magically "cured", but I'm hoping to identify her unique health needs not normally treated by the mainstream medical community. My goal remains improving her overall health and quality of life.

Oh, and did I mention she quit having as many seizures within a couple of days of her starting the vitamins? Even after neurology had us reduce her nitrazepam down to a lower dose in case that was causing all the sleepiness?

And we're 48 hours without a seizure and counting?

Thing Two:

Ummm... I forgot. I'll let you know if I remember.

Differential Diagnosis

I haven't talked about this much, mostly because I dismissed it as nothing at the beginning, and have been continually reassured by medical personnel that it probably is nothing. I've been at the doctors at least 4 times about this, most recently two days ago.

But the more I read, and the more I think, the more I'm certain that something else is afoot. I feel like I need to call in Dr. House and his team.

However, he's a fictional character, and besides, I don't think I could afford him anyway and Medicare probably won't cover it.  I've asked Dr. Google several times, but so far he's been indecisive. So I want your opinion and ideas!


Differential diagnosis, people!

The parts you probably know: Abby started having seizures again in the middle of December, and has had multiple dosage increases on her anti-epileptic medications since then. They have only been partially effective, reducing her seizure numbers from 3-6 daily to about 2-3 daily (and having odd days where there appear to be zero). Her current medications include 700 mg of valproic acid per day (split into three doses), and 4 mg of nitrazepam twice a day (daily total of 8 mg). I've been pushing for a change in drugs, but so far no one is listening because they refuse to do anything as long as she's not feeling well.

So now the "not feeling well" part. For nearly two months, she's been lethargic, sleepy, pale, irritable, not eating well, pooping weird, and generally amiss.

Lethargic: a puddle on the couch. She wants to cuddle and watch Raffi instead of going outside to play. Refuses to stand up at times. A normally active child, she's been reduced to the speed of a basset hound.

Sleepy: sleeps 12 hours at night, then proceeds to sleep another 2-3 hours during the day. She gave up napping a year ago at Christmas. Her norm, without the clonidine, is about 9-10 hours, but we're still having to give the clonidine otherwise she wakes up multiple times with night terrors. Often, she'll just be sitting there, falling asleep with her eyes rolling back in her head. Refuses to do ABA work, and wants to lay down in my bed. Is frequently crawling into our bed at night these days anyway too.

Pale: She looks like death warmed-over. Actually, that would be an improvement. She's death sitting at room temperature getting cold.

Irritable: see sleepy. Refuses to do ABA, which she normally loves. Refuses to get off the couch to come eat. Complains often, cries for no apparent reasons. Easily distressed.


Not eating well: rearranges food on her plate most meals. Anything she does eat tends to be carb-heavy, although she's having a good run on green grapes the past few days. Also is drinking very little the past few days.

The pooping thing: Stool has been a pale yellow colour. It reminds me a little of oddly-coloured clay. It's disgusting.

Have I mentioned this has been going on for two months??? I mean, she has good days and bad days, and will occasionally have a string of two or three good days, but really, it's been two frigging months!!!!

So, ideas?

Many of these symptoms indicate liver failure, which is a definite possibility with the valproic acid, especially the fatigue and yellow stools. Her last few ALTs, however, have come back normal (last one was drawn March 25), and when palpitated her liver feels normal. She did, however, scream like a banshee when her bladder got palpitated, so Dr. E felt that she probably had a bladder infection (which the urine sample seems to be a little vague about, but he's still pretty sure), and we did a course of antibiotics. Which we're now done, and she doesn't scream when you touch her lower tummy anymore, but she sure isn't any better with anything else.

I keep getting told that she has a virus and just needs time to get over it. Exactly how much time am I supposed to give this?

Oh, and have I mentioned that "they" won't do anything about her seizures until she's "feeling better"? Because that might be why she's having seizures, because viral infections lowers seizure resistance in many people.

But what if her return of the seizures is a symptom of whatever the larger problem is???

I don't think it's the medication, because we've had a couple of changes in this time frame, and it doesn't seem to make it better OR worse. Besides, Dr. E was impressed that she wasn't stoned, especially with the dosage of nitrazepam. 

A friend has suggested to me maybe a blood sugar issue is happening, something like hypoglycemia, which does fit her family history.  I'm wondering about thyroid, and I'm wondering when the last TSH level was done. Thyroid issues would also be more-or-less consistent with her family history. Her metabolic workups have always been clear, and I'm doubtful that an inborn metabolism thing would magically show up at this point in the game.

I'm doubtful it's the change in her diet to the GFCF, as this problem predates it, and I was actually hoping that it would maybe resolve whatever the problem is. I've started giving her multivitamins wondering if it's maybe a malnutrition issue due to her self-restricting on foods. I'm not sure if the really bad self-restricting predates this thing, or if they happened together.

Help!!!

An Awesome Article

Another IS parent, Ken,  has posted this link to a great, great article about Epilepsy. I encourage you to read it. The article starts about a 1/3 of the way down the first page. 

A Little Seizure Video THE SEQUEL

Clever title, eh? 

Another short video with Abby having a seizure, filmed yesterday at supper. And while we're on the topic of videos, you might want to go check out this one about radical brain surgery. It's yummy (and don't get queasy like I did when they show the big brain probe thingy). 

A Little Seizure Video

Many people have asked what Abby's seizures now look like. We've been trying to video-capture one, unsuccessfully I might add, for months now to show the neurologist. We finally captured one today!

The lighting is not great, so you can't see her eyes darting around. For those of you who know the "real-life Abby", you know it's not like her to sit still for so long!

We haven't seen a difference yet with the increase of nitrazepam (I've refused to consent to more VPA increases as we've seen pretty much bupkis for results thus far). I'm hoping for a med change sometime in the very near future.

Anyway, grab some popcorn and enjoy (and please just ignore the fact that I almost drop the camera about half way through the video)!

Randomings and the Epilepsy Rant

I've been meaning to post for awhile. Never seem to get around to it. So I'm taking five and catching up.

I unplugged from Facebook. It's scary. I feel adrift, but noticed that I have considerably more time on my hands.

I've gone back to piano. What does that mean, you ask? Many moons ago, I stopped my studies to get my ARCT in piano pedagogy. After many months (years) of musings, and the need to so something totally unrelated to the world of Autism and Infantile Spasms, I've decided (with my husband's blessings and support, of course) to complete my education. Cool eh? I feel very suave and sophisticated telling people that I'm now studying with a Russian-trained piano instructor at the University. :)

Speaking of Autism, very good news! They finally hired a second tutor to replace our girl that left in November! The new girl starts in two Mondays from now. We're all very excited.

Abby is doing well/not well. She's finally over her sinus/ear infection that took two rounds of antibiotics to clear up (that's the "doing well" part). She's still having seizures (the "not well" part). Several times a day. I'm feeling a certain level of frustration because they don't seem to be doing anything...

They've increased her VPA from 200 mg BID (daily total 400 mg) to 200 mg BID then 300 mg OD (daily total 700 mg). She's at almost 100% increase, but we see no improvements. I still haven't actually talked to the neurologist, just the nurse-clinicians. They've mentioned maybe having us make the trip in to see them, but won't give me a date. I asked when do we stop just increasing a single medication that doesn't seem to be doing very much, and when do we try something else. Their answer is that she still has "room to increase" based on her weight and trough levels (last at 73, should be between 50 and 100), so they'll just carry on for awhile yet.

No EEG has been done to see what's up, and no other tests have been done except the trough levels, ALT for liver functions and CBCs. I'm getting antsy. I want to know if the seizures are coming from the same place as before. Do they have the same profile? We should be outgrown the Infantile Spasms, so now what the hell is this? She's definately having complex partials, but I couldn't tell you how many. At least three a day, although I suspecct more because I can't keep my eyes on her every waking second as much as a try.

I lay in bed at night, trying to visualize a path for us. It's very blank. I feel like we're at a dead end, and uncharted waters. I realize now that we will probably always have seasons in her life where we will be struggling with this disorder, but it's been a long time since I've really understood what that means.

I read a great post last night. It's a blog I've followed for a long, long time, another child affected by IS. She talks about IS being a symptom, not the disease. I had thoughts like that before, but was never able to articulate it. I envy her, because for all of their struggles, they finally had an answer. We've never gotten answers, and because Abby did so well for 19 months, we weren't overly concerned about that. We had hoped that part of our life was over with. But now, suddenly, the need for answers is very real and very urgent to me.

Bah, enough already. Onward with my day to be productive! Or at least a reasonable facsimilie thereof.

The One That Carolyn Originally Published Without A Title

Okay, so I'm blogging a lot lately. I need something I can do to maintain my sanity, and where I can watch Abby out of the corner of my eye. We've also had the camera handy trying to document the seizures (never seems to be on hand when she actually has one. Yeesh!). So we seem to have a plethora of pictures.

Miss Abby loves having her picture taken. She's the queen of close-ups. I have... oh, about a million... pictures like the above.









The weather if finally warming up. Our yard has been very lonely, with no one to play in it for over a week. Hopefully we'll get some good outside time this weekend. God knows we can all use it.


We've been working on lots of crafts, both in ABA and during our free time. Abby and I are working on colouring a big nativity scene to hang in the basement. I'll post pictures when we're finished (there's lots of colouring!).

We've made some ornaments. I spent the afternoon Mod Podging some of them yesterday.




Today has not been a great day so far. We've had three seizures and a bleeder by one o'clock. A bleeder? you ask. Abby got a teeny tiny paper cut on her finger, and it bled, a lot, for about an hour. It was everywhere. The ABA tutor originally thought she had a nosebleed, there was so much bood.

It may be coincidence, just the funny way she got cut. What's worrisome to me is that one of the side effects of valproic acid (which they've now increased the dose of twice, and changed the dosing schedule) is a decreased ability to clot. We will be keeping a very, very close eye on her this weekend.


Okay, so what's with the calendar? Just before Abby was first diagnosed, I bought this awesome calendar at Superstore that was HUGE, and had these giant grids, etc. Turns out it was a lifesaver.

(we interrupt this broadcast for the fourth seizure of the day)

(maybe I really should give her an Ativan)

Back to the calendar... our entire lives were recorded in that calendar during the year-from-hell. For example:



Those images are from our old 2006/2007 calendar. It's hard to see in the photo, but there's something written pretty much every day, even the "free day" (which I wrote "free day", LOL).

I didn't buy one of those calendars last year. I didn't think I needed it. This year, my sister-in-law was selling them as a fundraiser for her sons' daycare, so I bought one. Pretty good planning on my part, eh?

The new calendar is promising to be just as full as 2007, at least in the short term:

An Update

The number of seizures is on the rise. Yesterday we had three. It's classic partial complexes, with the flicking eyes, chewing motions and/or flirty mouth, clenched fists. She makes this funny little cough went she starts to come around. An increase in the amount of valproic acid has so far not done anything. She's on antibiotics to treat the sinus infection she's been struggling with, and at least that seems to be improving.


Her seizures are leaving her exhausted. She curled up on my lap and fell asleep like this last night.


She's trying very hard to be her normal, happy self, and is mostly succeeding. I praise God for that.

Rachael has started signing!! We've been trying to capture a seizure on video for neurology, without success. We managed to capture Rachael signing, however!!

And the Greatest of These Is Fear

My Mom used to tell me I was a scaredy cat.

She used to also sing me the song: "Every party needs a pooper, that's why we invited you, party poo-per, party poo-per", but that's for another discussion. We have already mentioned the pleasant, agreeable child I once was. Let's just leave it at that.

I couldn't even list things that I was afraid of as a child, but as an adult, I'm afraid of (in no particular order):

- furnaces
- most gas appliances
- on occasion, my husband's driving
- putting my hand into strange, dark places
- earthworms
- spiders and spiderwebs
- most insects
- thunderstorms and/or tornadoes
- large dogs
- some teenagers
- slimy things

I admit it. I am a scaredy-cat. There, I said it out loud.

When Abby was diagnosed with Infantile Spasms, my most overwhelming emotion was fear. I was afraid. How do I cope? I asked myself. What does this mean? Who will my child be? Can we really do this?

Why is God mad at me?

But you adjust. You learn to cope, and develop strategies to muddle your way through.

I am afraid of spiders, but I compensate by getting a really, really big pair of shoes to squish them with. I am afraid of thunderstorms, but I keep my weather radio handy and will hide in the basement when it gets too intense. Earthworms are not scary if I wear garden gloves when touching them.

When Abby had that first, very intense round of seizures, I was very afraid. The second go-round, I was still afraid, but I felt better equipped. I knew the worst was behind us.

And now, as we plunge into a third round, there is fear, but also anger. We went almost 20 glorious months without a seizure. Until this week. I didn't know for sure until today, but it was unmistakable. And Abby knew. She's been trying to communicate it to me the past four days. She'd been crying, restless, clingy non-stop for four days. It came to a head this afternoon, when she refused to leave my side.

And then I saw it.

When it was done, there was fear in her eyes, but she saw that I knew. She cried in my arms, and all I could do was hold her tight. But then we were at peace again, and the crying, the restlessness, the absolute clinginess stopped. She was more herself again. The fear, that loneliness from holding her secret was gone.

There's nothing scarier than being alone with your fears.

The Strength of Our Feet

I woke up this morning feeling absolutely horrid.

That, in itself is nothing new. Since Abby started nursery school last month, we've become the House of the Damned, going from one illness to the next. I understand the whole "you need to stay home when you're sick so you don't spread it to everyone else" courtesy, but we're to the point that if we did that, we are never, ever leaving this house until Spring. A quick check confirmed no one has fevers (because that does merit staying out of public), and off to Mass we go.

Naturally, we were late for Mass, so we sat at the very, very, very back of the church. The building is over 100 years old, so while the acoustics are not terrible thanks to modern wonder of amplification, they're not great. I'm struggling to hear the priest over the noise of my less-than-happy-to-be-there-this-morning children. Plus, I'm still figuring out his very-thick African accent.*

The priest raises his hands in prayer, and prays for the strength of our feet. I'm sure I had a weird look on my face until I realized he was praying for the strength of our faith, and not our feet.

I giggled inwardly to myself at my silly mistake, but stopped suddenly at a revelation. Sometimes it is about the strength of our feet. Not necessarily our physical feet, but about our ability to keep going, keep taking the next step, and to keep putting on foot in front of another, so to speak.

My husband and I have had moments in our life together when the only thing we have is the strength of our feet. During the December when Abby was diagnosed with Infantile Spasms. During the long, dark days of January when Abby was in the depths of the ACTH. When she relapsed and ended up in the hospital again. When we got her diagnosis of Autism. Even the days early in my pregnancy with Rachael when I started bleeding, and I thought that I was going to lose her.

Even my friends, there are a few in mind that have had a less-than-stellar year. Yet they keep putting one foot in front of another, and keep going. The strength of their feet is the only thing that keeps them going from one moment to the next.

It's our ability to keep going, to keep putting one foot in front of another, that sees us though. It's something we need to do no matter what path God has set us on.

I think I will pray for both the strength of my faith and the strength of my feet.

* Growing up, I had a teacher who was from Africa. I loved listening to him speak, the gentle lilt of his voice, and the way certain words rolled off his tongue. The catch was, of course, that we were all speaking French. As a result, I have never met a French-speaking African native that I can't understand. However, according to my brain, English is a whole other ballgame. I seem to have to re-learn the intricacies of their unique pronunciations with each new person I meet.

Seizures and H1N1

Click here to read a bit more. I will post more if I find out.