Dizzy With Worry

I paged the on-call neurologist yesterday. I didn't want to wait until Monday to hear B's EEG results, and I had a great friend (see her blog here) give me the push I needed to make the call (sometimes I'm way too nice, and I really have to change that, in all aspects of my life).

The results of the EEG? Abnormal, with seizure activity. Not surprising, I suppose, but I was holding on to that last shred of hope that this was all some giant fluke. The neurologist apologized profusely for no one getting back to me Friday, and told me he would make sure our actual doctor called me first thing Monday (if she doesn't, she's getting a page).

So, what does this all mean? Well, first and foremost it means I can't leave Ben alone. He had two big seizures in a week, and now I feel like we're just waiting for number three. The medication he is on won't work right away, and the dosage he is on is so low, I doubt it's useful at this point. It takes two months to reach the full dosage, so from now until then, I'll be sitting on pins and needles just waiting. He pretty much has to be with someone at all times, which he hates, but is necessary.

This week B is supposed to go back to camp. He was only there two days last week, because of doctors appointments and seizure #2. He really, really wants to go back, they are fine with having him there, but I am 100% not fine with sending him. Camp is a long day, from 9am-4:45pm. We are in the car at 8:10, and don't get home til around 5:30. My brain is screaming at me that the chances of him having a seizure at camp is too great. While I know they are perfectly capable of handing it, should it happen, I don't want it to happen when I'm 45 minutes away, and he's with people who are not me. I haven't made any final decisions, but it's going to take superhuman strength to let him go...

A big part of me says until we have seizure control, and really know what's going on, it's irresponsible to send B anywhere. I mean, even today, a gorgeous Sunday where we have no plans and could do whatever want, I find myself just staying home because, what if. 

Two seizures in eight days. Abnormal EEG, showing seizure activity, even when he looks fine. What if seizure #3 is just around the corner?

Yes, we are not the first family to deal with this, but it is my first time dealing with it. Things have changed so much since last week, when we thought (hoped) the whole thing was just a one time deal. I feel like I'm armed with very little information, and that doesn't feel great. The sooner we can get another neurology appointment, the better.

This is a big change for our family. It's going to take a while to work through it all, and get to a place where I'm comfortable even going to the bathroom without eyes on B. Where I don't wake up and go to bed scared.

Where I find peace with our new, new normal.

Two in Eight Days

I was just about to let B sleep in his own bed. He was over sleeping with mommy, and my husband was over sleeping with the dog. I was finally starting to relax a teeny tiny bit.

Then Thursday morning happened.

We were on our way out the door to camp. K had a "camp out" that night (kids 7 and above get to sleep over), so the kids ran ahead to get in the car, while I gathered all her stuff, and made my way downstairs.

Suddenly I heard a someone banging on the sliding door at our deck. I assumed one of the kids forgot something, or fell and needed a band-aid (because usually when I tell them to go get in the car, they take it to mean run around the yard). I then heard my husband start running, right as I exited the basement and walked into the garage, where I saw Ben, laying on the driveway, next to my husband's truck.

At first I thought he had just fallen down, but then I saw him convulsing. Exactly the same as the Wednesday before. Another grand mal seizure.

I was better this time, knowing what was happening. I kept my wits about me. I made sure he was safe, and spoke soothingly to him. I told my husband it was pointless for us all to go to the ER, and for him to drive K to camp, and I'd take B. I told him to reassure K, who had been witness to the seizure this time (and who apparently listened when I drilled into her head 1000 times to tell us if Ben started acting weird).

We went to a different ER this time. One affiliated with our pediatrician's practice. I talked to Ben the whole way there, asked him to squeeze my hand, and called my husband, reminding him to please, please reassure K. I was worried about her, too, but knew camp was the right place for her (it's a camp for kids with special needs, 1:1 ratio, they would also help her process what happened. She wouldn't have to sit in the ER for hours. It was the right decision, and she had a great couple days there).

The ER doctor ended up calling our neurologist to let them know B had a recurrence. They took blood to make sure his glucose levels were OK (a seizure can make your blood sugar drop, but the two pieces of Nutella toast B had for breakfast weren't  letting that happen). They watched him to make sure he didn't have another seizure right away. Made sure he came out of it. Same as before.

After several hours we were allowed to leave. B was back to himself, remembering nothing. He asked to immediately go to the store to get the new toy I promised (he has been incredibly spoiled this past week, and I'm completely unapologetic). I slowly started to realize the gravity of two seizures in eight days. What it meant. That we were really in it, now. We weren't lucky enough to be in the "one and never again" club.

The neurologist's office was able to get him in for a sleep-deprived EEG Friday morning, and the doctor called me Thursday night to tell me they'd be starting B on medication. We'd discuss further testing after the EEG was complete. Our pediatrician called me yesterday to go over everything that happened. She was in shock B had another seizure.

Aren't we all.

So, that's where we are. Right now I am just waiting for the EEG results. I had hoped the neurologist would call yesterday, but she didn't. I sent her an email this morning (she'll regret ever giving me that!). I know we aren't her only patient, and I know test results don't come immediately, so I won't page her and demand an answer. There's nothing we can do over the weekend, anyway, and we already have medications and instructions, in case anything else happens. I'll page her Monday morning, if it comes to that.

The medication B was prescribed takes six weeks to reach full dosage, so I'll be on pins and needles waiting for another seizure. Plus, I know these meds don't work immediately, anyway. School starts August 28th, and I'll probably take over transportation to and from school. I don't want B on the bus, and I am not even sure I want him on a special education van, just because we only live about three minutes from the school, and he could end up on the van for 30 mins or more, having to pick up/drop off other students. I want him home with me as much as possible.

We meet with the school nurse before school begins, too. I told the neurologist to provide a detailed seizure protocol, and I'm sure we'll have to add accommodations to make sure B is never left alone. He will have a 1:2 aide, anyway, but he can't be walking around the school alone, or be allowed to play on the playground equipment without being watched. I am hopeful the school goes along everything, and I can send B to school feeling as comfortable as possible (which, admittedly, won't be very comfortable at all).

Not exactly how I wanted to spend our summer vacation, but that's life. Always unpredictable. I'm just hoping this upcoming week is very, very, very boring.

My Truth

I've been working really hard lately to focus on the silver linings. Always looking ahead. Letting go of grudges.

But, sometimes, it's hard.

Here on the blog (well, blogs, since this isn't my first rodeo. See thee "about" page), I've always been really open with our lives. I've always been honest that I have two, "high-functioning" kids, and honest about how that means nothing in the midst of a rage-fueled meltdown, the lack of friends, or the myriad of other things that come along with autism.

But, our autism, heck, the two different "autisms" we deal with in this house, are just that. Our "autisms". I don't know what profoundly affected folk go through. I don't know what it's like to see autism as only a gift. I've made that clear many, many times. I speak for us, hope some people get something from my writing, but know we all walk different paths.

I also try really hared to remember other people have their own stories. Everything is relative. What's awesome or horrible to you, could be the total opposite to someone else.

But, sometimes, I feel bitter. Probably a bit jealous. I read blogs/status updates/Twitter feeds where someones worst day would be a welcome change here. I think to myself, if that is the hardest thing this person/family goes through, they should consider themselves lucky.

The thing is, I don't know the inner workings of people's lives. A lot of the time, what is shared is only part of the picture. Some people don't want to reveal the really bad days, because that might make people uncomfortable, or they deem it too private. On the flip side, there are those who don't want to share the really good days, because that might make them look like they don't belong in the "club".

Some people just want to appeal to the masses, so they mold their stories so that as many people as possible can relate. When it comes down to it, how often do we meet the person on the other side of the computer in real life? We are in complete control of how people view us, and our children, when they log on. Some might manipulate what they write to draw you in, because page likes, or followers, are the end game.

For me, well, I want to be me so much, I've gotten into heaps of trouble staying true to myself, and our story (remember that "about" page?).

So here I am...a middle-class, stay-at-home mom. We aren't rich, we aren't poor, but we are lucky to have the means (most of the time) to fight for our kids. We live in a big house, bought before any diagnosis, and before most of our disposable income went towards all things "autism". Our house is large, yet in dire need of updating, new carpets, and a good power wash. All our belongings are still a mish-mash of what my husband and I brought to our relationship, which sometimes makes me feel less like adult, and more like I'm living in a dorm. My marriage isn't perfect, I can't cook to save my life, and I am proud the one day of the week my house is actually clean. Sometimes I yell at my kids, and sometimes I can be a crappy friend/wife/insert anything else here. I'm a nervous nellie, and loathe confrontation to a fault.

But, I love my family, would do anything you ask of me, and try really hard to be worthy of the oxygen I breathe.

I am constantly pursuing happiness, and trying desperately to shed my "Yankee" negativity (a term from my college days). In my younger years, I went through some hard times, homelessness, helplessness, and the fear of that happening again drives me now. I'm probably not exactly like you, and might be the polar opposite of you, but I appreciate everyone in my life, real, and virtual. Those relationships get me through.

I guess I just wanted, no needed, you to know that I'm just a regular person, trying to connect through my little blog. I'm not trying to make money, write a book, or get free swag. My goal has always been just sharing our lives, our journey, hoping that even just one person feels better knowing someone out there "gets it". I've always wanted connect with my readers on a more personal level (which, yes, has become more difficult this past year, with all the school-blog issues, but let's me honest, most of you probably know who I am). Because of this, I've made great in-real-life friends. Heck, I've made great cyber friends! (READ THIS. That awesome gymnastics Dora...found for me by someone I know only online, and shipped across the country for me. See...that's what I'm talking about). 

So, thanks for reading. It means more to me than you'll ever know.

(P.S. Let me know if I can ever find you a cool gymnastics Dora, too)

The Worrier (not Warrior) Mom.

I don't want to be that person. That person who acts like she's the first mother whose child has ever had a seizure. Like the (super annoying) women who act like no one has ever been pregnant before them? Yeah, that's not me. B having a grand mal seizure was, is, a big deal to me, but I know there are people who deal with this kind of thing every day. Who deal with worse. I am big on putting stuff in perspective, so I just wanted to get that out there.

Of course, this is my blog, and in my tiny corner of the universe, I'm scared. Scared that B's seizure wasn't just a fluke. Scared that his sleep deprived EEG will show something. Scared that his life will be limited in some way because of epilepsy. I'm his mom, it's almost like the worry is out of my control.

We met with a neurologist yesterday, who asked the same questions as the ER doctors and pediatrician. Who really wanted there to be a trigger. Sleep deprivation? Dehydration? Illness.

And so badly I wanted to tell them there was. A simple explanation for why my son's brain suddenly went haywire. The, some kids just have one seizure, never to have one again, loses a bit of weight when the look on the doctor's face doesn't match her words.

It was two hours of a lot of talking, and a little neurological testing (jumping on one foot, checking reflexes, etc).

The doctor told me that eventually I will relax, allowing B to sleep alone in his own bed. I'm sure she's right, although last night was not that night. Maybe when the image of him on the floor begins to fade, or not to hurt so badly, although more likely I will just force myself to let go. He likes his own space, his own room. My husband would like to come back to bed.

I am sure there are many parents who would deal with this better. I'm sure there are those who sit in judgement of me for being such a worrier. People sit in judgement of everything, these days. I am sure there are those who think my new found hermit-ness is ridiculous, too. But, it is what it is. We all deal with things differently. That's just reality.

Today, though, I shall focus on the fact that B gets to finally start camp. A camp I am 100% confident in, when it comes to caring for my child. He'll get to have fun, without helicopter mom watching his every move. Will I be tied up in knots the every day when he's gone? Maybe. But I'm his mom...that's just what moms do.

I Shall Not Admit Defeat!

It's been a week. Or, really, a week and a half. Forget waiting for the other shoe to drop. I think sometime this week I looked up and 757 shoes came raining down.

But, as K's therapist's would say, that's glass half empty thinking, and that won't do.

It all began when I got into a fender bender the week before last. Apparently a red light doesn't mean the same thing to all people, and the woman behind me figured she'd use my car to stop, as opposed to her brakes. She looked at my broken bumper and told me to just get some glue. She didn't want to hear the person in the car with me had whiplash, and decided the best thing to do was jump into her vehicle and drive away. From an accident. Because, you know, why not?

One 911 call later, I filed a police report, called the husband, and had my poor car towed. Thankfully, I now have it back, so I can ring in 200,000 miles as planned. I mean, I am a little over 198,000. I was not happy thinking I might not get to reach the next milestone. It's the little things.

We are not a one car family, but someone, who shall remain nameless, thought he'd save a few bucks and not add rental car insurance to our policy. Let's just say, it's being added now. I always had this idea in my head that we could ditch a car, and just share one to save money. A lot of people do that. We...are not these people.

So, we're cruising along last week, and then Wednesday happened. Let me start by saying I am very thankful my husband decided to work from home that day. I am not thankful I put off taking a shower...

After getting K off to school, my husband, B, and I slept in. It was the one day that week I had nothing to do. We got up around 9:30 (yes, 9:30...I know some of you are murdering me in your heads), I made B breakfast, and while he ate I checked my email (and, OK, probably Facebook and Twitter) in the other room.

One second I hear B talking to our dog, and the next I hear gurgling. Gurgling that I thought was caused by him making a mess with his chocolate milk.

Don't I wish.

I walked into the kitchen and found him on the floor. Drooling. Convulsing. Not responsive in the least. I called (screamed) for my husband, and dialed 911 (two 911 calls in a week is not my idea of a good time).

My kid was having a seizure.

Seizures are not something we've ever dealt with. Quite frankly, I thought we had dodged that little autism bullet (if it is at all related to autism). It was the scariest morning of my life. I literally thought my kid was dying. It took him a long time to snap out of it. He even lost speech for a while. Thankfully he remembers nothing, thinks it's cool he got to ride in an ambulance, and thought the ER was fun...they had saltines and ginger ale. Party down.

I really don't think paranoia begins to describe how I've felt since. I don't want to leave him along for 2 seconds, and have forced him to sleep with me all this week, thereby forcing my poor husband to the couch (but he has a dog to snuggle, so don't feel too bad for him).

I've tried not to Google grand mal seizure. I've tried convincing myself that B might be one of those kids who randomly has one seizure, then never again. We thankfully got in with a neurologist tomorrow afternoon, and I am anxious to just get on with it...whatever "it" might be. I am sure there will be EEG's and tests...protocols for school and camp...I just want all our ducks in a row. I want to know what to expect. I want to know more than I know now.

And I never want to see my child like that again.

Some other, personal stuff went on this weekend that I'm not at liberty to share, but all in all, I've had a lot on my mind, and am ready to hibernate for the winter. I am thankful for some friends and family who understand that I am currently half-human, and who are giving me the time to live in my own little world. Pretty much all I can muster is being a "mom" right now (so, I guess I'm thankful for an understanding hubby, too).

The one light in all of this is that last week we secured a permanent school placement for Katie, which is huge, and wonderful, and takes a giant weight off my shoulders. Not that the universe needed to replace that weight, but that's life. I'm glad K will remain somewhere she is happy, and thriving. One hurdle down, a zillion to go.

But, these past couple weeks have put a lot into perspective. Life is short. Anything can happen. I'm in control of pretty much nothing. So, the things I can control, I will. I need to make sure my family is happy. I need to make sure I am happy. I need to be selective with those I let into our lives, and not live in that glass half empty way. In the end, we are all responsible for ourselves, our actions, our decisions. How we choose to live. What is important, what isn't. What stress is necessary, and what can be left behind.

(Blah, blah, blah, etc, etc, etc, please stop waxing philosophical, says the audience, eyes rolling).

Love,

Your favorite pseudo-blogger (I am, right?)

J