Birthdays

I've had one of the best birthdays ever this year.  I asked my friends to wear purple and tag me with their pictures of themselves in purple on my facebook page.  I got tons of pictures.  And even more people messaged me that they too were wearing purple.  I asked it for a reason, for epilepsy awareness.  But it was really so much fun.  My husband was helping his best friend move that day, which I totally supported because Mike had helped us move when we bought our house.  I was fine with it.  David didn't get home until after 7, but he picked up dinner at the Candlelight Inn and a bottle of Spumante on his way home.  We sat and watched Mildred Peirce, which he never would watch without it being my birthday and ate our dinner (mine was the biggest t-bone steak I've ever seen, and I could only eat half of it) and drank our wine.  Then the next morning we took the boys to his sister, and we went to see The King's Speech, which was my choice.  And then we had dinner with David's sister and family.  And they gave me a beautiful bracelet.  All in all, it was just wonderful!

It has started me thinking of previous birthdays.  I remember waking up one birthday morning to find the family room covered in balloons.  I don't remember how old I was.

My tenth birthday was in Florida at Disney World.  I bought myself the stuffed rabbit my sister wanted to buy me.  I got my ears peirced.  I got lost at Cyprus Gardens.  It was a fun vacation.

And there was my 11th birthday.  I was awakened by a noise at 11 pm the night before.  Both my parents were in my room.  My mother pounced on me and said everything was okay.  My father dropped something on his hand and cursed.  I sat up and turned on the light.  There it was...my very first stereo turntable.  Yeah, I'm that old.  Shut up.  I also got a copy of the Greece album.  YES, I ALREADY ADMITTED I AM THAT OLD; SHUT UP!  It was brand new at the time. 

My twelfth birthday party was held at the bowling alley.  Me and my friends and my little sister.  My mother said we all talked about where babies came from and how we WERE NEVER going to do that.  And Tammy, my little sister, said she couldn't wait.  My mother knew she was in trouble then.

My thirteenth birthday was a surprise party.  My father's birthday was 3 days after mine.  Connie Worrell, a lifelong friend, had been my science partner in the science fair, and we won at the school level and were competing that night at the regional level at the community college.  We came in third.  It didn't really occur to me that it was odd that my mother was not there to cheer me on.  Connie's mother took us.  When we got back to my house I asked why were there all those cars?  Connie whispered that it was a surprise party for me and my daddy.

By my fourteenth birthday, it had all gone to hell.  I didn't even want Mama and Daddy in the same room as each other anymore.

The night before my 21st birthday, I went out with Aleca.  She was having problems with her now ex-husband, and had moved home with her parents, but it was before they had the twins, so the divorce was years off.  But she and I went to Fredericksburg to the mall.  She told me she wanted my opinion on something, she had a friend she wanted to buy a gift for but couldn't make up her mind.  She took me to a jewelry kiosk.  I don't remember the choices, but I told her I thought the turquoise and silver earrings were beautiful.  She agreed and bought them and then turned and handed them to me.  Happy Birthday.  I was completely taken by surprise.  Seriously.  I know I should have seen it coming, huh?  Anyway, we went back home and ended up in a restaurant/bar, where my mother and stepfather were spending the evening at just minutes before midnight.  The doorman took my ID and laughed and said to wait for 10 minutes to order a drink and let me in.  I did.

Four years ago, when Jimmie was a baby and still on ATCH, my friend Liz came out to visit us around my birthday.  It wasn't the day exactly, but I wanted a digital camera for my birthday.  And David had said I could have one, so we went shopping at Walmart so I could pick one out.  I picked out a less expensive camera but deeply admired the Sony CyberShot.  Liz stood there with her head cocked to one side and said, "If money wasn't the issue, which one would you want?"  Yeah, I'm stupid.  Once again I didn't get it.  I said the CyberShot.  She told the guy at the counter, "She'll take that one."  My jaw dropped as she handed him her card.  She looked like she had swallowed a canary.  Cat imagery in case you missed it.

And then there is this year.  My family and friends all wore purple and sent me pictures.  It was awesome!

Celebrating Purple Day! Happy Birthday to ME!

March 26th is my birthday.  I'll be 43 years old.  It's also Purple Day.  And that is a fabulous birthday present!

What is Purple Day?  So glad you asked.  Purple Day is an awareness day.  You've heard of them.  Cerebral Palsy Awareness, Breast Cancer Awareness.  Well that's what Purple Day is.  It's an awareness day for Epilepsy.  The idea is simple:  You wear purple.  People see a lot of people wearing purple and start to ask why all the purple.  And then you answer, "To raise awareness about Epilepsy."

Epilepsy is one of those things everyone thinks they know about.  But in truth they really don't. 

First, epilepsy is not a one pony show.  Most people think of epilepsy and seizures as the tonic clonic, what used to be called gran mal.  My son has never had a tonic clonic.  He has, none-the-less, had multiple seizures every day for most days of his young life.  He has atonic (or drop) seizures, including both a simple head drop and a full body drop, tonic seizures (stiffening), where his muscles all tighten and his airway constricts, atypical absence, where he closes his eyes and appears to be daydreaming (atypical because he does close his eyes), and myoclonic, where his muscles will suddenly jerk.  I further believe I have seen him have one Jacksonian, which consisted of a bizarre kind of shaking on one side of his body, though it was not caught on EEG and therefore unconfirmed.  My son's seizures don't look like what people think of as a seizure, and they will tell you, "No he didn't have a seizure."  But I know better.  I know he did. 

Second, epilepsy, especially uncontrolled epilepsy, is life threatening.  The seizures themselves can be life threatening, from injury or loss of oxygen or cardiac arrest.  But there is also a very dangerous risk of SUDEP, Sudden Unexplained Death in Epilepsy.  This usually occurs during the night.  So many people think that epilepsy is almost a non-issue...oh you get used to having seizures and you're okay when it's over.

Third, for some reason, (and this is our personal experience) people seem to think all children outgrow it.  Many children do have febrile seizures or other unexplained seizures that do stop as they develop.  But that is not true of all epilepsy.  And certainly not of our son's epilepsy.  Our son has an intractable epilepsy (just means it is difficult to control).  He will not outgrow it.  And your saying he will, while intended to comfort us, actually just sounds like you think we are overreacting to the situation.  We are not.  In fact, epilepsy does not have a cure.  Wrap yourself around that.  There is no cure.  There is remission.  But no cure.  Jimmie will always have epilepsy.

Treatment is a guessing game.  We (I mean the human race) have so little understanding of the workings of the brain that we have no knowledge of how epilepsy works.  There are theories.  But they are unproven.  And we really don't know how anti-epileptic drugs work to stop seizures.  Again, there are theories.  But they are unproven.  So doctors, neurologists, guess at drugs to administer.  If it doesn't work, try a different dose.  If that doesn't work, try a different drug.  If that doesn't work, try multiple drugs.  If that doesn't work, try a diet.  If that doesn't work look at surgery, if surgery is an option.  That isn't to say it isn't an educated guessing game.  The doctors know what drugs work for a fair number of kids who have similar seizures to your kid.  It doesn't mean it will work for your kid, but it's worth trying...There are no absolutes with epilepsy.

So with these generalizations in mind, I am asking you for a birthday present.  Please wear purple on March 26th.

Spring

My Sand Cherry!  I can't wait for it to bloom again!

In truth, Fall has always been my favorite season.  I like the briskness of the nights, with the warmth of the days, the smell of the autumn breeze, sweaters, school...  But there is something about Spring.

Spring is such a happy time of year.  I mean I feel happy in the spring.  The air turns warmer.  The colors are so vibrant and new and fresh and happy.  There is rain too, but even the rain is happy.  I love the sound of it on my roof...maybe because it is my roof.  The air smells good too.  Cleaner.  There is music in the air.  Literally.  Birds are singing everywhere.  And they sing such a happy song! 

In Northwestern Illinois, it is still quite cool.  But this week, there has been a hint of spring in the air!

My kids feel it too.

Charlie just couldn't wait to get outside today.  I made him put on his jacket.  He grabbed his cement mixer truck and little people school bus and was out the door!  He ran gleefully to the backyard, dumped both vehicles into his wagon, which he began to push around the yard.  I tried to show him how to pull the wagon with the handle, but no...he preferred to push it.   His jacket lasted about 5 minutes.  Who exactly taught that boy how to use a zipper?  Oh..right...me.  What on earth was I thinking?  Certainly not that he would rip his jacket off first time I turned around.  I tried to get him to put it back on, because, as I said, it's still cool.  He wouldn't have it.  He shook his head no vigorously and ran away.  Oh well.  If he gets cold I guess he'll put it back on.

Jimmie too was off like a shot.  He ran around the backyard at full speed several time.  Then he would play with a stick.  Then he would run again.  Smiling and squealing as he went.

The grass is still brown.  The tulips have not yet bloomed.  The trees are still bare.  But Toby killed a Robin last night and left it on the doorstep this morning, so there are signs of spring starting to stir.  Poor Robin.  Toby is a prolific hunter.  We had a full grown rabbit left for us a year ago.  And while our front porch is a killing field, we don't have mice despite the open field in back of our house!  Go get em Toby.  Toby loves spring too.  Getting him inside this week has been more difficult than getting him to go outside during the winter...and he's part Maine Coon.  He's designed for winter.  But he stands at the door, looks at the snow drift, blinks, and you can practically hear him say, "Yeah, right.  You first" as he turns and walks back into the warmth of the living room and to his cat tree.  But this week.  Nope.  There is spring out there.  Baby birds and rabbits.  Clean smelling breezes...and color.  Can cats see in color? 

Another few weeks or so, and it will be perfect!

Come on Spring.

A Mission to Change the World

I have a mission to change the world for the better.  My husband says I am doomed to fail.  Perhaps, I am.  Perhaps I will not make the slightest difference at all.  But maybe, just maybe, I can cause one person to think twice the next time they are talking with their friends about the use of THAT word.  Maybe I can change the mind and heart of one person.  So I have a mission.  I never let that word pass without saying something.  Ever.  I don't care who says it.

"Mr. President!  Excuse me?  What did you say about your bowling abilities?  Perhaps you should reword that!  NOW!  I realize you didn't actually say the word.  And I know you are joking.  But you implied the stigma, and you made fun of it!"

Let me start by explaining a few things.  First I grew up loving and playing with my cousin Joe Joe.  And I have defended him against mean bullying brats on the school bus from the first day I got on it.  Joe Joe was a kind soul.  He loved everyone.  And even he would furrow his brow and frown at their merciless taunts of "RETARD!"  Joe Joe was non-verbal.  But he would flip them the finger.  This boy who loved everyone would flip them the finger for calling him that word.  He was born with Down Syndrome.  He did not walk until he was 6.  He only said a very few words, and they were difficult to understand.  He said my name.  He loved me.  Of course, it sounded like "Guna."  My name is actually Lacynda.  But I knew he was saying my name.  He passed away a few years ago.  Thankfully, passing before his mother, my aunt.  I know her grief is beyond expression and that she does not feel this way, but she was his sole caretaker.  If she had gone first, Joe Joe would have been lost without her.  One of his brothers doubtlessly would have taken over, but I don't see them doing it with as much love and tenderness as his mother.  He would have lost more than he could have handled I fear.  But back to my point.  Joe Joe was a wonderful human being.  He always greeted everyone with a hug and a smile.  But he understood the hurtfulness of that word being flung at him, and he responded in kind.  How evil is a word that it can make a sweet, kind, loving non-verbal person respond to it with an obscene gesture?

Second, I have a 4 year old son, who is the center of my universe and who has severe epilepsy, mild cerebral palsy, and a moderate to severe developmental delay, being assessed at 12 -18 months developmentally.  He is also non-verbal.  He does not understand THAT word yet.  No one has flung it in a hateful way in his direction.  His younger brother, who is neuro-typical, also has no idea of the insidiousness of that word.  I know though that soon both of my boys will know the sting and hurt that word will cause.  I can't protect them from it forever.  But I guarantee the first time I hear it, the little brat who uses it will certainly get an earful from this Mama.

There is a ridiculous defense that "I am not using that word against anyone in particular and I have freedom of speech, so I am not apologizing for using it."  Give me a break.  You don't have to use it against anyone.  Just using it at all is an affront to humanity.  It makes it socially acceptable to bully an entire group of people, including MY CHILD.  And not just children.  I am talking about adults bullying an entire group of people, taking advantage of them.  A year or two ago, there was a Turkey company in Iowa, who were shut down by social services because they brought in a group of developmentally challenged men from Texas to work in their processing plant, paying them below minimum wage, and housing them in a condemned building without heat and running water, in the dead of winter, by the way, without benefits, without health care.  Basically, they were using these men as slave labor...IN AMERICA.  And then there are the people who steal from and abuse people in group homes because they have no one to stand up for them.  And it is all socially acceptable because we degrade and belittle people by using that word.  Further, your rights only extend as far as they don't impede upon mine.  So if you think you have the right to call somebody a "retard," then I have the right to tell you why it's wrong.   And if you can listen to why I am offended and not apologize for having offended me, then you are deficient in morality.

All I am asking is that you think about the words you use.  All of them.  Think before you pour them out of your mouth to the world at large.  They do have an effect.  They do have power.  They do make a difference.  They do cause strong emotions.  You don't have to subscribe to "political correctness."  Just try to not use any words that by design and context are intended to belittle or degrade another human being.

Loving in a Modern Family

I never expected to be quite so traditional.  I never expected that when and if I ever fell in love that I would submit to a man.  I was my own person.  I was smarter than that.  And here I am, a stay-at-home-mom, raising two kids, asking my husband before making big decisions.  It's not that I don't trust my own judgement.  I know what I want to do before I ask, but I do submit to his judgement, because now I realize, even though I am my own person, my decisions affect him too.

We attended a marriage conference this weekend at the baptist church.  And the speaker offered a perspective on Paul's assertions that explained why I am so happy to submit that really helped me understand myself and my husband a little more clearly.  Paul tells us that husbands should love their wives and wives should respect and submit to their husbands.   Now to the casual observer that certainly seems sexist.  Why should the wife submit while the husband is only to love?   Shouldn't it be equal?  Well in truth, it is equal.  Men (and therefore husbands) find it very difficult to express love.  It's hard for them.  But it is what woman (and therefore wives) want the most from their men.  Women (and therefore wives) find it very difficult to submit to and respect their men.  But that is exactly what men want to have to feel loved.  So what may seem like a sexist statement to begin with is in fact nothing more than a loving give and take that provides each partner with exactly what they desire to feel loved and cherished.

Why did I fall so easily into this very traditional role of wife?  It's really very simple.  I fell in love.  And I want to honor that man, and I want him to feel loved and cherished.  And it became very obvious to me that he was a very traditional man and that simply asking for his input before I made a decision made him happy.  When you love, you want to make the person you love happy.  So I ask his input.  I may know exactly what I want to do.  But I love him, so I ask him.  And guess what?  Usually he wants to do the same thing I do.  And when he doesn't, I am flexible enough to give him his way, if only to prove I was right to begin with.  And as much as I hate to admit it, his way usually works out just fine.  Darn it.

And as for him, does he express his love for me?  Well the man sat on the couch for 2 hours rubbing my feet the other night.  I felt loved.  He never made a move other than to caress my feet.  He had no ulterior motives.  My feet hurt.  I had a charlie horse in my arch.  He just wanted to make me feel better.  It was heavenly by the way.  And it served far more than relieving the charlie horse.  It soothed my soul.  He also went to the conference with me.  You can believe it was not his idea.  He had no desire to go.  It was for me.

So is this very traditional marriage somehow outdated?  I don't know.  Maybe.  But we've been married now for 8 years.  And we both still feel loved and cherished and trust our partner more than any other human being.  We are still each other's best friend.  I think we are modern enough.

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.

The sound of a baby's laughter

This morning I watched baby Micah, in a viral video, laughing hysterically as his father ripped up a job rejection letter.   There is so much joy in the sound of a baby's laughter.  Everything is brand new.  And in hearing it we feel brand new too.  But you know, it really is so much cuter, when the laughter is coming from your own baby.  Charlie laughing at David making the lollipop noise may not have gone viral.  But it makes me happy in a far deeper way than Micah, cute as he is, can ever do.

Charlie is part of Jimmie's miracle too.

David and I are...well...old.  I was 38 when Jimmie was born.  David, 35.  We wanted a baby so badly.  And Jimmie was such a blessing to us.  A miracle of modern science.  Artificial insemination success!  But then he wasn't developing as he should...and eventually it became obvious that he would never catch up with his peers.  I just couldn't leave my baby in this world all alone.  I just couldn't.

So David and I decided to try again.  But not as hard.  We agreed we wouldn't go the whole fertility doctor route again.  Clomid, fine.  So I went to my obgyn and asked for clomid.  I took it for the prescribed days 5-9 of my cycle.  On day 11 I started the fertility tests.  On day 13 it was positive.  Day 28, I couldn't wait for the next day, so I took a pregnancy test, which was positive before I stopped peeing.  That's Charlie.  Easy.

He's an amazing kid!  He is beautiful too, like his brother, but in a totally different way.  Jimmie is the spitting image of me.  Charlie looks just like his dad.  And he's so smart.  He gets things so quickly.  He's having some issues with talking.  A delay we think comes from the fact that his brother is non-verbal.  But he understands every word we say to him.  And so we are not overly worried.  It's enough that I called Early Intervention.  His evaluation is on March 16.  If he qualifies, we'll do the therapies recommended.  If he doesn't I'll call the school system to get him in the at-risk program.  He qualifies because his older brother has delays.  I want to give him every opportunity to be the best he can be.  But honestly he's great either way. 

His laugh is music.  His smile is light.  His general enthusiasm in everything is life affirming.

Charlie is a miracle.

Today's random thought (March 4, 2011)

I remember that Mrs. Ingram had us keep a daily journal.  It was the hardest thing in the world to do...and to be perfectly honest, really didn't get done most times until the day before it was due.  I honestly just don't think I had that much to say or was that interesting.  I mean seriously, I don't even care that I ate pizza for lunch again on March 10, 1986.  I am making that up.  Like I said, I never kept the thing up to date.  

I thought about that journal during a recent episode of  The Middle.  Poor Sue Heck keeps a diary and records such shocking secrets as she likes lettuce. 

Honestly writing down the mundane day to day stuff of life just isn't that interesting.  But I would dearly love to have no cares or worries to ponder on a daily basis.  What a blessing to have nothing more interesting to write down than that you like lettuce (or pizza for that matter).

Today I am trying desperately to escape the screaming and crying and children laying on me and head butting each other because they each want my sole attention and having to call doctors to ask for a 10 day script for a second AED in less than a week because the stupid mail order pharmacy is ridiculous and STILL hasn't filled the extremely necessary drugs ordered 2 weeks ago which were supposed to be expressed to us last week and still haven't left their stupid pharmacy and the mess of toys covering my living room floor and the pile of laundry needing to be folded! 

So what's for lunch?