Ben on a horse

My madness

Yesterday morning I was frantically running around the house, trying to get the kids ready for their day.  Mornings - especially Monday mornings - can be hectic:  We have to leave the house in time to pick up Elliot, one of Chloe's schoolmates, to carpool to school, to get there right when the doors open, so that I can get them all settled and dart off to Ben's group - 40 minutes away - that actually starts 20 minutes later.  Anyone who knows me knows that I'm pathologically on time.  Being late causes me irrational amounts of anxiety.  I wish I could learn to be ok with being late.  Anyway, on this morning (as happens most mornings), Chloe was giving me a hard time about brushing her hair.  I got upset and stormed off to finish the other preparations I was making.  Now, I know that it's not always easy to tell when I'm upset - my facial expression certainly doesn't show it easily (...not!) but somehow Chloe could tell that I was upset.  She went to her dad, who brushed her hair and put it in a very cute daddy-like ponytail.  Proudly, she presented herself to me, hair brushed.  Well, I was still upset, and kept going about my business.  Aaron said, are you upset?  And I said, yes.  He said, well, let's talk about it.  I went about my business preparing lunches and bags.  (As I write this I do have to wonder, with some embarrassment, why Chloe not letting me brush her hair was so upsetting...  But in the interest of honesty, I will portray myself accurately)  This went on for a few more minutes.  Then Chloe, exasperated, said, Mom, now when will you get over this madness?  Oh boy, she is an old soul.  That, of course, made me laugh.  I said, now, and gave her a kiss.  She smiled and said, Oh mama.

Gratitude

Back in March, when I was very low, my dad suggested keeping a gratitude journal.  I loved the idea because I really wanted to focus on something positive at the time.  With dad's help, I wrote something every day.  Dad helped me by sharing his own daily gratitudes.  But, try as I might, I couldn't muster authentic gratitude.  I felt like I was cheating.  I had heard that if you fake it, eventually you might start feeling it.  So I persisted.  But I never felt it.  Not only that, but I started feeling angry that I was supposed to come up with something to be grateful for.  So I stopped.

Lately, gratitude has filled my heart - so much so that I can really feel it.  My heart feels so full.  It's an unfamiliar feeling.

I am so incredibly grateful that my mom and dad moved down the street from me.  Last night, I walked to their house to put out the trash cans for them while they are traveling.  After putting out the trash cans, I walked into their house to bring in some laundry that was delivered. I was overcome with gratitude that they lived so close, that I could walk to their house, and, even in their absence, feel their love and support; that they gave up their dream of living in Colorado to be near me and my family. 

This afternoon, I was so incredibly grateful that I could make Ben laugh, really belly laugh, at my facial expressions and my tickling.  He is so much fun to be around.  He's interacting with us, he's laughing with us, he's really here with us.  Seeing the recognition in his eyes is priceless.  Priceless.

Chloe hugged me last night and said, "Mom, you are the most special person in my life and I love you more than anyone else who loves you".  What?!  Is she 4 or 94?  She is a bottomless source of love and I'm ashamed to say that I haven't always been able to receive her love.  Right now I can and I'm so incredibly grateful for that.  It's true that children don't judge you, they only love you.  Chloe has given me that gift since she was born.  She is an amazing being.

And, of course, there's my husband, Aaron.  He is steadfast and loving.  He tries so hard to do what his family needs him to do.  There are times when Chloe yells at him, and I yell at him.  He takes Ben to the floor to do his exercises and educates him about us females :).  (we don't listen)  He takes us all for who we are, and we love him for it. 

It's a whole different world to me again.  I don't have to fake my gratitude, I really, really feel it and it feels wonderful. 

Laughter vs. Suffering

This thought came to me yesterday:  Laughter and suffering are incompatible.  We can laugh and be sad, we can laugh and be frustrated.  We can even laugh and be angry.  But we can't laugh and suffer.  The anti-dote to suffering is laughter.

A few weeks ago, before Ben's surgery, I was at a yoga class when the teacher led us into happy baby pose and asked us all to laugh.  I had heard of laughing yoga before - you go through the motions of laughing, maybe even faking it, until you really feel like laughing.  The idea is that laughing is contagious, once your face is laughing and you hear everyone else laughing, you will laugh from the bottom of your belly and hear.  In that class, I couldn't do it.  I couldn't even fake it.  Or, I tried to fake it and it didn't work.

But now I am able to laugh again.  Ben has been seizure-free since his operation on August 19th.  It's amazing, incredible, an absolute miracle.  The generator was turned on about a week ago.  I am holding my breath, hoping and praying that this will continue.  Ben is engaged and interested in the world around him.  He laughs at funny toys.  He smiles at people he knows and is almost starting to wave.  He is reaching his little arms out for me to pick him up, when he wants to be picked up.  His therapists keep saying that he's a different kid.  But, really, he's always been this kid, it was just hidden behind a fog of static neural activity.  His brain couldn't process the information it was getting.  And he couldn't show us what he was thinking and feeling.

I'm trying hard to enjoy this time because I have no idea how long it will last.  It's a lot of pressure, right?  But I want to savor this seizure-free time and savor the ability to laugh with my children.

Update on Ben

We are happy to report that Ben's seizures have already been dramatically reduced - both in frequency and severity!  Amazing!!  I was told by his neurosurgeon, Dr. Kurtis Auguste, yesterday that this is probably an effect of the vagus nerve having been poked and prodded.  This kind of mechanical manipulation can cause the nerve to fire more.  So, even though the device hasn't even been turned on yet, we are seeing some positive results.  This seems like a great sign to me.

Dr. Auguste, the pediatric neurosurgeon who implanted the device in Ben, has been amazing.  Contrary to my expectations (we all know surgeons are not known for their bedside manner ;), he has been exceedingly warm and available.  I would highly, highly recommend him to anyone needing a neurosurgeon.  We are just so grateful to have access to this level of care and experience.  He made the surgery a non-issue, which is what great surgeons do!

Success!

Ben's surgery yesterday went really well.  His neurosurgeon, Dr. Auguste, said that his vagus nerve was very big for a child Ben's age so he had no trouble finding it!  He recovered well, albeit grumpily, from anaesthesia and was home napping in his own bed by 3pm, 7 hours after the surgery had started.

He is still a little fussy but healing well.  Thanks to all of you for sending your warm wishes yesterday.  I got so many text messages and emails I could  barely keep up!  It made us feel very loved :)

In about two weeks, Ben's neurologist, Dr. Sullivan, will turn on the generator to start stimulating the vagus nerve.  The stimulation frequency and amplitude will start out very low to minimize any discomfort to Ben.  So it will probably take about 4 months for us to know whether or not it's helping him.  But we are so hopeful that this will at least reduce the number of seizures he has every day, and thus give him a chance at a better quality of life.

Upcoming Surgery

We got the confirmation letter today that Ben is scheduled for surgery next Friday, August 19th.  We have to be there at 6am for his 7:30am surgery.  The letter explained how we may or may not be with him while he goes under - depending on the anaesthesiologist's determination.  The letter explained that, in some cases, the child becomes agitated while being put under and really benefits from a parent being there to comfort him.  I've been with Ben before while he's put under anaesthesia.  This letter explained it all in such a matter-of-fact way.  But I remember holding him while the mask is put over his face, him looking me in the eye, not knowing that we were drugging him to sleep.  I remember watching him drift off to sleep and not being able to hold back my tears, crying uncontrollably.  It reminded me of putting my dog to sleep.  There's always a risk with surgery, albeit a very small one, that the child will never wake up.  Right?  Doctors out there, tell me I'm wrong.  It is panic-inducing. 

I know that we are doing the right thing.  I know that this is the best option for Ben.  I know that, if it works, it will be so much better than flooding his brain with drugs.  Drugs that are severely affecting Ben's ability to function.  We take for granted that the world is represented to us in a certain way.  Have you been on drugs that significantly altered your perception?  Can you imagine having to live that way all the time?  He doesn't even know what it's like to not be on drugs.  Ben has continuously been on drugs since he was 14 weeks old.

I'm scared to death and this letter didn't help.  Part of me doesn't want to OK the surgery because I'm scared.  Scared to tears.  Although I know this is Ben's best chance of getting some relief from the seizures, I don't know that I'll ever forgive myself in the off chance that something goes wrong.  After all, they call this 'elective' surgery.

A Gift

Yesterday morning I was feeling sorry for myself.  I heard that my nephew, who is 6 weeks old, is sleeping through the night.  I'm happy for my sister-in-law.  I really am.  I don't know why that made me cry.  Both my children were quite difficult as infants.  I am still, more than 2 years after Ben's birth, extremely sleep-deprived.  In tears, I said to Aaron, why didn't I get that?  Why didn't I get the experience of having an easy baby?  Why is it so hard for me?

He said, simply, Why didn't you get a child that died one month after birth?  Why weren't you born in Darfur?  Why haven't you lost a sibling or parent in a horrible accident?  It goes both ways, you know.

He's right.  If I'm going to complain about my fate in life, I have to consider that it could have been worse.  It can always be better or worse.  It is what it is.  My challenge is to accept my fate and be grateful for what I have.  People have told me to focus on gratitude, that it would help me.  But it never quite sunk in as it did yesterday morning.

That is the best gift he could have given me.

Our Cowgirl

Anger anyone?

I didn't grow up with a strong belief in God.  I've been looking for a way to foster that belief ever since I was in my 20s.  Unsuccessfully, it turns out.  I can't seem to wrap my head around anything the bible says.  I've talked to priests of various traditions.  I've questioned the Mormons that come to my door - maybe they know something I don't, you never know.  (They don't).  I've talked to a counselor who's an ordained minister.  He actually made the most sense and took me the closest to the idea of a God. 

Recently, of course, my search has intensified.  I think it would give me some peace.  So on Sunday I went to a Buddhist Insight Meditation Center in Redwood City.  The Sunday talk was about how people tend to avoid unpleasant situations, or pain, and seek out pleasant situations, or pleasure.  The buddhist teacher urged us to consider our reactions to pain and pleasure.  How do we handle an unpleasant or a pleasant experience?  How we react to the pain or the pleasure is important to note, he said, because it can give you insight into yourself and your state of well-being (or not-so-well-being). 

At the end of the talk, he opened it up to questions.  People started talking about various unpleasant situations in their lives.  For example, being around family at Thanksgiving.  They talked about how difficult this could be for them.  They were chuckling at each other - everyone knows what that's like, right?  I just wanted to scream, YOU F&%$*ING ASSHOLES.  What about the pain of watching your own child suffer?  Having to watch him have multiple seizures a day, sometimes clawing at you with terror in his eyes because he knows it's coming and there's absolutely nothing you can do about?  Are you all still chuckling? 

I am still so angry.  Sometimes it comes out at other people because I think they have such an easy life, compared to mine.  I know that's not fair.  Or at least part of me knows it's not fair. 

A surge in seizures

We have decided to go ahead with the surgery to implant the VNS in Ben.  It is scheduled for August 19th.  It was a tough decision to come to, but given how the seizures are impacting Ben's life, and the possible benefits, we think it is a good decision.

However, August 19th seems too long to wait for another potential intervention.  Ben's seizures have returned full-force.  He's having 7-10 seizures a day again.  So, in the meantime, we are trying the last drug available to him.  I'd been holding out on this drug - partly because of its potential fatal side effects (always very scary, however low the odds), and partly because it was a hope I was reserving for bad times.  Those bad times are here, and I'm willing to use that last hope now.  I really, really hope it helps him.  We started yesterday, and only time will tell...

The Zen in BenBenZen

I heard a lyric in a song today - "ha ha ha, bless your soul, you really think you're in control".  That made me think.  As many of you who know me would guess...  well, there's an inkling of a tendency there for me...  Oh, let's face it, I like to be in control!  I like to think that I have a way of determining how things will go in my life.  My first realization that I will have very little control of my life came in the form of a tiny little baby girl, who has told me what my life was going to be like from the moment she entered it!  And she still does.  I will record her bossing me and Aaron around and post it on here - just to give you an idea of the force we are dealing with!!  She knows what she wants and has the energy to go after it - even if it takes all day ;)  Hopefully we will learn how to channel that so that she does get everything she wants in life :)

Ben has been the catalyst for a different kind of realization that I am not in control.  I have no control over how fast he will develop.  When will he crawl?  When will he say the words, "mama"?  We have no idea.  The therapists and doctors give me exercises to do with him and pills to give him.  In the hopes that, someday, he WILL crawl and say the words I so desperately want to hear - "mama".

When you go for a hike, there is often a well-trodden trail.  It may go through dense brush or through open fields, but the trail is always obvious.  These are the trails most people follow.  We see each other on these trails and greet each other in passing, always assuming that the other person is doing exactly what we are doing - walking outdoors, getting exercise, soaking in nature.

They say that Ben will progress, only slower than most other kids.  He's on one of those trails, but just farther behind.  He will catch up eventually.  He's just going at his own pace.

I don't buy that analogy anymore.  Ben is not on any of those clearly marked, well-used trails.  He veered off early onto a little-known and unmarked trail.  This trail is covered with brush that he and I have to clear away.  I am behind him, desperately trying to clear the brush so that he can proceed without extra work on his part.  Pushing my way down this trail I get confused.  But Ben doesn't.  He seems to know where he's going and is confused that I don't know.  He turns around to look at me with these eyes that tell me that he knows exactly what's going on.  Why don't I know?   

I think this paradidm shift is extremely important for a number of reasons.  It gives me the awareness to allow for the fact that Ben is trying to communicate in ways that I'd never thought of.  It also gives me space to learn about his way of communication, his way of seeing the world. 

Is this Zen?  Is this acceptance of Ben?  I've been ashamed of my behavior for the past two years.  I've been ashamed that I'm having this much trouble accepting Ben EXACTLY as he is.  But for a mother, it's a tough line to straddle.  I want to push him to be his best, I want to expect the most from him.  But I have to do it on HIS trail.  Not on my familiar trail. 

Chloe's first ballet recital practice

Ben on a horse for the first time

A little nervous on his first day?

Ben started hippotherapy

Vagus Nerve Stimulator

Ben's neurologist thinks that the next step for Ben will be to implant a vagus nerve stimulator (VNS).  It makes me so so sad to think of having to subject Ben to this kind of surgery.  If we choose to go ahead with it, they will implant a generator the size of a watch under his left clavicle (according to other parents, this will be visible below his skin).  They make another incision in his neck by the left vagus nerve and guide leads up through the skin to wrap around that nerve.  They can program the device to send electrical signals at varying frequencies.  I've heard from other parents that these devices often malfunction (and then are even left in), can cause headaches, coughing, and vocal cord damage, among other things.  These decisions are incredibly hard to make for Ben.  Of course I want to do what's best for him - while putting aside my own fears and sadness.  But even in my most steadfast times, I don't know what is best for him.  I think that holds true for decisions that people have to make in a lot of different areas of life.  It's just that, in Ben's case, the stakes are so high.  Do we go ahead with this surgical procedure and its risks, or do we accept that Ben has seizures every day?  It would be a whole new world for us and for Ben if were allowed to live without daily seizures.  Maybe it's worth the risks?  Oh what to do?

Beauty

Today, I told Chloe she was beautiful.  And she said, "Mom, you're beautiful too."  And she was looking at my face. Then she said, "But you have some scratches here" and pointed to my forehead, and to my most prominent wrinkle between my eyes.

A poem

This poem was posted on another blog by a mom in a similar situation as me.  It definitely resonates.  I think it could apply to many different situations so I thought I would share it.

By George Gray


I have studied many times
The marble which was chiseled for me –
A boat with a furled sail at rest in a harbor.
In truth it pictures not my destination
But my life.
For love was offered me and I shrank from its disillusionment;
Sorrow knocked at my door, but I was afraid;
Ambition called to me, but I dreaded the chances.
Yet all the while I hungered for meaning in my life.
And now I know that we must lift the sail
And catch the winds of destiny
Wherever they drive the boat.
To put meaning in one’s life may end in madness,
But life without meaning is the torture
Of restlessness and vague desire –
It is a boat longing for the sea and yet afraid

Chloe & Ben at the Easter Egg Hunt

Chloe is the Easter bunny :)

Chloe's chicken dance

Scary but good

Ben has been doing amazingly well!  I refuse to be superstitious so I will write about it.  But there's a small piece of me that is of course afraid that as soon as I write about this good turn of events, it will be over.  But, since I refuse to be superstitious, here goes.  Ben hasn't had the kind of seizure where he goes unconscious in over two weeks!  Even the small seizures have gone down in frequency.  He's had two completely seizure-free days lately.  I wish I had something to attribute this to.  As I don't, it feels very temporary.  Seizure frequency and severity have been unrelated to the drugs.  We've even been reducing his Lamictal dose very, very slowly.

Developmentally, he is advancing as well.  He's stronger than ever.  He's more alert and interactive.  He has started protesting therapy and gives us a lot of attitude!  He fake cries and looks at me to rescue him.  It makes me laugh.  It's great to share some good news.

We are in Vail (well, some of us are)

Sadly, Aaron had to stay behind to keep bringing home the bacon.  Sometimes a change of scenery really helps. I booked this trip about a month ago when I was going through what now seems  likely to have been panic attack!  It is really strange to think about all the carefree times Aaron and I spent here before all hell broke loose in our lives. I talked to the magic carpet guy today and he seemed soooo young!  (some of you may know that Aaron and I met while working at ski school, probably no older than that young guy; I suppose some 13 years ago....).

Ben has been having good days and bad days.  Days of incessant crying and days of relative ease.  We love the days when he doesn't cry and the world always seems a better place on those days.  Chloe has been learning how to ski and is amazing at it.  She's a natural :)  Of course WE think so!

We are sitting tight with Ben right now.  He is on one drug, Lamictal, and seems to be OK.  Some days he has 1 seizure, some days he has 7.  We are considering  a vagus nerve stimulator - an implanted device that, when it works, can reduce seizure frequency by about 50%.  We are also considering another drug, Felbatol.  But that drug can come with insomnia and loss of appetite.  I feel like I don't have the strength right now to endure those side effects.  Ben has become very thin and is just now starting to eat willingly again.

Just another quick update on our progress and life.  Hope all you readers are doing well :)

Chloe learned the snowplow on her first day

Chloe's 1st time on the magic carpet

Through a rough patch

Ben is just coming off a series of two drugs that did not sit well with him.  For the past six weeks, while we successively tried Banzel and Depakote, Ben has spent most of his time either crying, sleeping or seizing.  The drugs obviously made him feel just awful.  Our happy baby disappeared for most of those six weeks.  I will not bore you with the details of those dark days.  This period was probably an important lesson for me.  My expectations and hopes have changed.  My most ardent desire now is for a happy baby - seizures or not.  I used to think that if only we could stop the seizures, everything would be OK.  That is definitely not the case.  The drugs Ben has to endure can be worse than the seizures.  And as you know from reading past entries of this blog, the seizures are not easy to deal with.  But, compared with Ben's quality of life on these particular drugs, the seizures are preferable.  I never in a million years would have thought that I would feel this way. 
Things are thankfully getting back to normal.  Ben spent most of today smiling and even laughing, happily playing with his favorite toy, and just generally having a good day.  This is what I wish for him now.

Ben laughing with Auntie Elizabeth

Good Days

Ben has been doing so well lately.  He's been more alert than ever.  He is reaching for toys and hair and everything around him.  Yesterday he pulled off Nana's glasses - repeatedly.  It made us both smile :)  He also gives kisses, initiated all on his own.  It is the sweetest kiss in the world. 

We went to story time at the library yesterday.  Ben was interested in everything going on around him, listened to the music and the stories, and watched the other kids.  It was such a relief.  I almost felt like a "normal" person.  That constant anxiety I'd been feeling for over a year now was gone for that hour.  I just sat and enjoyed Ben being able to participate in story time.  It was wonderful.  More than wonderful. 

Ben has only had one small seizure in the last 5 days.  It should be a good time for us, and it is, but I know not to be fooled.  I know this intellectually not emotionally.  The odds are against us.  But there is always that chance that this time it will be different.  Nonetheless, I'm trying to prepare for what seems like the inevitable storm to come.

Chloe is as busy as ever

Tonight, while I was laying in bed with Chloe, helping her get to sleep, she says, "Mom, don't you want me to have fun?"  I say, of course, I do.  And she says, "well, then get me a horse. Without a horse, I can't have any fun."  I say, what about the carousel (her favorite activity!). "No, boring".  What about the roller coaster (her first ride last week with Captain was so exciting, she talked about it for days).  "No, boring".  What about ice cream?  "No, boring".  What about skiing (she is excited to go skiing this winter).  "No, boring". And on and on, she held steady to her declaration that she would only ever have any fun again if she got a horse. 

I tried to distract her by telling her I had a special song for her.  Which, of course, I was making up on the fly.  As I'm not very musically inclined, I ended up singing my own made up words to some familiar song.  Chloe (a 3 yr old, mind you!) says, "Mom, what's that tune?  That's not a special song, what's that tune?" Tune?  How does she even know the word tune?  I don't use the word, I didn't even consciously realize that I had picked a specific tune to sing my words to.  Then she figured it out. "Moooom, that tune is 'You are my Sunshine'! That's not a special song for me!"  I think I'll enroll her in a singing class.

A hard heart

I've been struggling with a hard heart.  Have you ever felt that your heart is hard?  Lacking compassion, softness?  I'm sure I've felt this before in my life, but it has never been so apparent to me as now.  Because when you have a hard heart in relation to your kids, it hurts.  I can't figure out exactly what leads to this feeling, and it doens't much matter to me.  What matters is that I soften my heart, so I can be fully present for and loving toward my children.  I'm trying yoga.  I love it.  When my heart is hard, the poses that open the heart are quite painful.  My chest and ribs are sore for days.  Maybe a physical reminder to keep my heart open and soft? 

The only thing constant in life is change

We got some bad news about the electrical activity in Ben's brain.  Back in December, I asked for an MEG - basically a more powerful EEG.  This is a diagnostic procedure usually limited to epileptic patients who are candidates for surgical intervention.  There are indications in these patients that the abnormal activity is localized to a small area in the brain - which, if excised, could at least reduce seizure frequency.  This test helps to localize the abnormal activity so the surgeon knows which tissue to remove.

I asked for this test on Ben in the hopes that his abnormal activity would be isolated to at least one cortex of the brain.  With the help of other neuroscientists, we had come up with a way to try to help Ben. Targeting that area functionally - say with visual stimuli if it were the occipital cortex - might organize the brain matter.  The more organized it is, the less likely seizures are.  Good solution, right?  And, WAY outside-the-box thinking, by the way.  Ben's neurologist thought the idea was crazy (and desperate).

After the analysis on Ben's brain was done, I spoke to the neuroscientist who runs the MEG lab.  He said he had never seen a brain with so many abnormal spikes.  Granted, the patients he usually sees have been preselected.  But still, it was hard to hear.  After getting this news and trying to explain what it meant to my sister, I burst into tears.  I felt hopeless, sad, frustrated.  This has been kind of my last resort.  My fantasy that would change everything for Ben.  I have not been able to accept that all we can do is keep trying new medications.  That wasn't good enough.  There must be something more we can do!!!  Nope.

And, after all that, I had this thought:  The only constant thing in life is change.  How does that fit into this situation?  Why is Ben's brain not changing?  Why aren't the seizures changing?  How can this stupid saying apply to EVERYTHING in life I never want to change and then not apply to what I DO want to change?!  How unfair.

Then I had a thought.  Our experience of Ben's seizures will change.  That gives me hope.  I felt this moment of peace and acceptance (and let me tell you it truly was just a moment) during one of Ben's recent seizures.  I felt completely out of control.  I really understood for that moment that there is nothing I can do to change that seizure for Ben.  But I can affect my own experience of it.  I can probably also affect Ben's experience of it by just being peaceful around him instead of panicky.  So I will hold onto that thought for now.  This will change.

The details you don't want to know

Ben just had two really bad seizures, two days in a row.  So it's getting worse, not better.  I really thought the Lamictal had a chance of working... 

I met a woman last night who has epilepsy - controlled by medication.  I asked her to describe what it feels like to have a seizure.  She said that the worst part happens right before the seizures starts.  She knows when it's coming and can't stop it.  And that it's just really scary - the feeling of losing consciousness.  This must be what Ben is feeling because he cries out.  His face is distorted in fear and then in a grimace induced by the seizure.  During the worst part, he looks at me, crying out, and I just wish I could stop it somehow.  But I don't know how to stop it.  I've tried music, rocking, blowing in his face, flashing lights, firm massage, pressure points recommended by his acupuncturist, anything I can think of to stop his brain from seizing.  Nothing works. 

The seizures go on for 20 minutes.  That's 20 excruciating minutes where Ben is in distress, crying and seizing, and flailing as if to get away from his seizing brain.  It's just awful.  Unbearable.  I don't expect Ben to deal in any other way than he does.  I do expect myself to deal with it in a better way than I do.  I need to find a way to stay composed and to recover so that I can be a good parent to both of my kids for the rest of the day.  I want with all my might to check out - to go away, or to take Attivan, to drink, if I had pot to smoke it - anything not to experience what I experience.  But that is all unacceptable.  So, for now, I sit here, unable to stop thinking about how awful this is, and wanting to jump out of my skin.

I suppose that is acceptable for now.  But not for long.  Not for another year.  Initially I gave myself a year to recover, to find ways of dealing that are helpful, to find acceptance.  A year has not been long enough.  But another year?  I will not bear it.

6 days without a seizure

Well, Ben got another 6 days without a bad seizure. He had many small ones throughout that week (the ones where he's conscious but his body collapses every 10 sec.). It seems like Lamictal may work if we could only get the levels up high enough. He is a high metabolizer which means that, even though we are giving him a pretty high does of the medicine, it's not getting into his blood at therpeutic levels. We are increasing the dose and the times we give the medication (3x/day instead of 2x/day). Fingers crossed everyone.

Some encouraging news

We saw the vision doctor today, and she said that Ben's eyes are functioning as well as could be! She couldn't rule out any cortical visual processing problems but did not seem worried about that.

We also saw Ben's neurologist today. I always leave his office feeling better. He was very encouraged by Ben's development in the past six months since we've seen him last. He told me that the blood levels of his current drug are still very low, and that is both good and bad news. Good news because it means we can go up on the dose of this drug that has given us some hope. Bad news because it may mean that it will be hard to get Ben's blood levels up high enough for it to be effective. But, in the end, it gives us a lot of hope.

Oh, so good to have hope again. And, for some reason, our neurologist just makes it all seem ok. He makes it seems ok that Ben might continue to have seizures. He makes it seem ok that Ben is somewhat delayed - because he sees the progress, not the deficit. I love that.

Thank you to all of you who have emailed me with supportive emails and good thoughts. I know it's hard to read the posts I put up sometimes, and I really appreciate the support. I'm trying to put up the good as well as the bad!

Worse than ever

The seizures are worse than ever. During a seizure last night, I almost called 9-1-1. Thank God that we have a rescue medication - Midazolam - which we can administer nasally. This means that it is fast-acting. Ben was having trouble breathing, and it was so hard to watch. The Midazolam worked within minutes, though, and returned his breathing to normal, and sedated him so that he didn't have to experience the unpleasantness of the seizure. When he is coming back to consciousness from such a seizure, Ben often frowns and whimpers. Inhumanely, the seizure continues even when Ben reaches consciousness, and that last part is particularly excruciating for me to witness because Ben is in distress. I can't tell if it's because he's scared, or whether it's because he has a headache, or what. He frowns and whimpers and looks me straight in the eye.

Last night, I said to my sister, I don't know how this can go on. But even as the words left my mouth, I knew that it could. Epilepsy is a monster with no enemy. It can go on and often does. I realized, as I uttered those words, that it would go on. That our lives might be run by this monster for a long time. Maybe for Ben's lifetime. Hopefully that means at least my lifetime. We will find a way to manage living life with joy despite this monster. We will conquer it.

Then today, Ben was uncharacteristically fussy. Crying and wanting to be held all day. This is not like him at all. He is usually very comfortable wherever he is. He was listless and not alert. It was alarming. I took him to his pediatrician. She was alarmed but could not help us. He has no fever. He's acting like a baby who has a high fever - listless, fussy, sleepy but unable to sleep peacefully. Yet no fever. His neurologist had no answers either. What do I do? How do I help him? My gut tells me it's some kind of irregular brain activity causing him this uncomfortableness. I have no idea how to stop that for him. The only viable option is to sedate him but I'm not willing to do that. He's been sedated for too long during crucial developmental periods already. So, we will see how it unfolds tonight. Aaron and I have not slept in 3 days. Since the seizures started again. Please let us all sleep tonight.

They're back :(

So sadly to me and Ben and everyone else, the seizures are back. We had nine blissful days of no seizures. Ben had a very bad one last night, and then more today. It is heartbreaking to me. It is such a hard line to toe. I have to be hopeful, I need hope - but it is so heartwrenching when my hopes get broken. I don't know how to feel like everything is going to be ok.

Ben plays peek-a-boo

Chloe's thoughts

Getting there

I have good news to report to all of Ben's fans! It looks like Lamictal is finally working a little for him. Both the frequency and the severity of his seizures has been reduced. It is amazing. He can go 5-6 days without a really bad seizure. I hardly dare to hope that this will continue for him.

The other day I figured out that my anger level - which is 95 out of 100, by the way - is too high for me to enjoy my life. I need my anger. It gives me the energy to fight neurologists who tell me that all I can hope for is some seizure reduction, not total seizure freedom. It keeps me going when doctors immeditately mention the potential need for a feeding tube because Ben has been having difficulty eating solids. I do not accept either of those options.

But it is too high. A 75 out of 100 would be enough to fight for him. And would give me a chance to enjoy my life again. It occurred to me that in holding on to all that anger, I miss out on the good parts of our days.

Ben aaaaalmost getting himself up on all fours alone!!! Chloe giving me kisses all over my face, saying "Mommy, I love you, even when you give me a timeout, or when you say I can't have chocolate". Ben learning to play peek-a-boo and giggling and laughing when he's able to pull the towel off his face. Chloe putting her arm around Ben and cuddling him when he's upset, whispering in his ear "ssshhh, it's ok, Ben", and Ben responding to her.

Ben is progressing and that's joyful!!