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