Dealing with it

Imagine.  A baby.  Your baby.  You have waited all your life for this child.  You have prayed.  And cried when the months come and go and still no pregnancy.  You have visited doctors.  You have taken medications.  And now finally, with the help of modern medicine and a sterile version of a turkey baster, you are holding your perfect child.  He's beautiful in every way.  He has the most perfect little mouth you have ever seen.  Ever.  Your heart is overflowing with love and thankfulness.  You hold him in your arms and you can see an entire future.  You can see him running to you with a boo boo.  You can see him playing little league baseball.  You can see him in a cub scout uniform.  You can see him playing basketball with his dad in the back yard.  You can see him learning to drive.  You can see him leaving on his first date...so cute and shy.  You can see him getting ready for prom and leaning against the car in his tux, just like that picture of his father.  You can see him on his wedding day, so handsome and so in love.  All this in that one moment as you hold him in your arms for the first time and admire that perfect little mouth.

But as time passes, you feel like something just isn't right.  Everyone says that he's fine.  But you find yourself wanting to hear that he's developing normally, because something just doesn't seem right to you.  Your husband tells you that you are just a worry wart.  Your friends say he's fine.  But still you worry.  And then you see the slight upturn of the eyes to the left, with a flash that just looks like he's gone...with a slight jerk of the arms...and you tell people something is wrong.  They say he's just looking at something.  He's tracking is all.  Don't worry so much.  And your husband says he's fine...but you just know something is not right.  So you make him come and watch the bath, when you know it happens every night.  You make him watch.  And his heart leaps into his throat.  And he says, "Yeah, that's...something."  So he grabs the video camera.  And the two of you tape it happening at dinner.  And you call your best friend in Rhode Island because she has epilepsy, and she knows more about it than anyone you know.  She says tape it too...and call the doctor...ASAP.  She doesn't say it's nothing.  She is tight lipped almost.  And this scares you big time, but she is trying not to scare you...and what scares you is you can tell she's trying not to scare you.  So the next morning you call the doctor, and you and your husband practically run to the doctor's office, video camera in hand, tape cued up to go.  And he says...you need a pediatric neurologist...now.  So you go to Chicago.  And you watch them hook your sweet baby boy with a perfect little mouth up to an EEG...and you watch the lines skip and jump and meander in a mean looking way across the screen...and you hear the words hypsarrythmia and infantile spasms...and somewhere in there the pictures of that little boy running to you to kiss the boo boo and playing little league and wearing the cub scout uniform and learning to drive and going on that first date and getting ready for prom and getting married just fade to black.  How on earth do you deal with it?

I'll let you know when I figure it out. 

I do know that you pray.  You pray every single day.

I do know that you love.  You love harder and stronger than you did even before.

I do know that slowly other pictures come to your mind.

I do know that you find joy in that first step, even more because it comes so late.

I do know that you live and do what you have to do.

I do know you still think that mouth is the most perfect thing you've ever seen.  And it always will be.

Sometimes you cry still.  Sometimes you laugh with your whole body.  You hug your child every day.  You work with therapists and doctors and teachers.  You learn a new language.  You seek out people who get it, who deal with it too...or at least are trying to...just like you.

Life goes on.  And those pictures you had...they become less important to you.  You strengthen your faith and your love.  You'll be fine.  Remember he has never been through this before either.  He is learning to deal with it too.