The Things I Know

I am a fountain of knowledge.  I know all sorts of useless facts: like an elephant is the only animal with 4 knees.  Like the Etruscans, not the Romans, despite what Trivial Pursuit may think, invented the arch.  Like Dylan Thomas was Welsh.  Like West Syndrome is a devastating form of epilepsy in infants, also called Infantile Spasms, associated with a distinct EEG pattern (or rather lack thereof, since it is an overall disorganization of the EEG) called hypsarrythmia, myoclonic seizures, and delay or stalling of development.  I also know this means that in order to get the diagnosis of Infantile Spasms, hypsarrythmia has to be on the EEG.  If it's not, then it's not IS; it's infantile myoclonic epilepsy.   I also know that it's not just semantics.  Yes the seizures are the same, but the treatment is not.  You don't treat myoclonic epilepsy the same way you treat IS.  And if your child's doctor is worth his/her salt, they should also know the difference and shouldn't tell you it's the same thing.  I know that IS usually resolves itself by age 5, but that it often evolves into another form of epilepsy, often another condition called Lennox Gestaut Syndrome, which is equally devastating.  I know that epilepsy has no cure.  That if the seizures are resolved, the child is in remission, not cured.  The child still has epilepsy; it's just in remission.  Remission is good.  The longer it lasts the better the chances the remission is permanent.  But it is never a given.  Epilepsy never goes away.  Hard facts to know.  Especially when the child is your own.  I know that EEG technicians should never tell you what they see on the EEG.  They may have experience, but they do not have the medical training and resources to interpret what they see and draw conclusions.  That is not their job.  Their job is to run the test, not tell you what the test shows.  I know that hospital food really sucks.  I know that just because an EEG is clean, it does not mean that there are no seizures.  I know that just because an EEG is abnormal, it does not mean there are seizures.  I know a lot.

I also know that not everyone wants to hear what I know.  I know that I can come off like a know-it-all.  I know that the parents of an infant want to believe that no seizures means no more epilepsy.  I know that they want to believe the tech who tells them what they want to hear, whether positive or negative, when it contradicts the doctor, who is, like me, saying what they do not want to hear.

I don't want to alienate these people who do not want to hear what I know, but I feel compelled to share my knowledge anyway.  I always have.  But unlike in school, when I wanted to prove I knew more, I really just want to help these parents.

I want them know what I know because I have been where they are.  I have forced my infant to stay awake so that he will sleep during the EEG.  I have seen him hooked to EEG's.  I have seen the hypsarrythmia bleeping across that stupid screen.  I have shot my child full of ACTH.  I have seen him fight to learn to crawl and walk.  I have seen him seize uncontrollably every single day for years.  I have given him a myriad of medications to try and fight the seizures.  I have been handed sheets of paper from doctors with lovely words like "post infantile spasms intractable seizure disorder evolving to Lennox-Gestaut Syndrome" and "hypo tonic and ataxic cerebral palsy". 

And in a few years, they'll be where I am now, and they will want to share what they know too.  It helps keep us sane.

OH how I pray for more patience and understanding!

It's been two weeks now.  Screaming.  Crying.  Head banging.  Biting.  Smacking himself in the face with his cup, a toy, a book, whatever he has in his hands.  I am afraid he is in pain.  And I don't understand what pain or what to do about it. 

I thought it was his teeth.  I was sure of it.  I pushed and pushed and begged and finally convinced the local pediatric dentist to look at my son now instead of waiting the month for the appointment they had available for a new patient, only to be told that Jimmie's pain is not dental.  His teeth look good.  His gums are healthy.  Nothing to cause the pain.  I was so sure I had the answer.  I am glad I was wrong.  I am glad I know that his teeth are not causing him pain.  But now I am back where I started.  I have no clue what is wrong.

I feel so helpless.  I feel so inadequate.  What am I supposed to do?

I have been giving him Tylenol and Motrin for a week.  I can't keep that up.  It will only cause rebound pain.

I guess now I call the pediatrician and beg for tests for other things.  Strep.  Infection.  It has to be something.  This is not his personality.  He's a happy child.  He's a loving child.  I can't stand for him to be hurting.  I can't stand that I don't know what to do.  I can't stand that I am losing my patience with my family because my nerves are raw.  These are the people I love most in the world.  

What do I do?

How I came to admit Vivian did not break the dresser glass...

It was ions ago.  I was maybe 3 or 4.   Well I was at least 3.  I got the baton for my 3rd birthday. 

I loved the baton.  But I was terrible at it.  I couldn't catch the stupid thing if I tried.  Well, I guess I did try.  If you consider throwing both hands over your head and ducking trying.  And I marched like an elephant with a thorn in each foot.

But I loved it.  I had visions of ballerinas and cheerleaders.  I had my mother's looks, but unfortunately, I inherited my father's coordination.  It was just never something I would be good at, as a few years in the Legionnaires marching troop a few years hence my story would prove.

My cousin Vivian and I had a strange relationship as children.  I remember being jealous of the attention she got from my mother when she visited.  She called my Mama Dee Dee.  I thought if I called Mama Dee Dee too I would get some of that attention.  Suffice it to say my mother did not take well to my calling her by her nickname.  And Vivian had been for three years before my birth the child my parents were unable to have.  So she was jealous of the attention I received that had been taken from her, whether she would admit it now or not.  I thought she was bossy.  Which she was, but she was 6.  That's kind of a bossy age anyway.

Now, I had the furniture that my mother had as a child in my room.  My mother was a clean freak.  The dresser was topped with a green sheet of glass, so that it could be cleaned with glass cleaner and get clean, but not affect the wood.  And there was that baton.

Vivian and I both wanted to play with the baton.  In the midst of our argument, the baton was thrown, and the glass was broken.  My mother came running.  Vivian swore I did it.  I looked my mother right in the eyes and pointed to Vivian.

My mother believed me.

Fast forward 25 years. 

My mother and Vivian were sitting together at Rudy's (Vivian's eldest brother) wedding.  It was a beautiful wedding at a lovely hotel with an open bar.  They had been fighting for a few years over stupid family stuff, but deep down, Vivian was still the child my mother had doted on as her own and always would be.  The fight was so ingrained that even now, when Rudy's daughter named for both of these women, Ms. Vivian Demitra, acts up, he and his wife joke that Vivian and Demitra are fighting again.  Anyway, at this moment, they were not fighting.  They were loving each other very much and apologizing for years of stupid stuff.  Then Vivian says, "But I swear Dee Dee, I did not break the glass.  Lacy, you were there, who broke the glass?"  I was half in.  I thought for a second.  Baton thrown, hands in the hair, bouncing off fore arms, glass breaking.  I answered slowly, "That would be...me."  My mother gasped in horror.  "Lacy you told me it was Vivian!"  I shrugged.  "Mama, I was three."  Vivian laughed triumphantly, a weight lifted off her shoulders.  Come on, it was just a piece of glass ladies...and did you ever see me throw my baton?  Vivian was six, she could catch the stupid thing.  Why on earth would you believe me? 

But still, it felt good to lift that weight from Vivian's shoulders.  I may have just been a child, but apparently it really bothered her all these years.  She more than paid for the glass in hurt feelings.  So I say again, Vivian, I am so sorry I lied when I was three and told my mother you broke the glass.  I'm sorry she believed me.  I'm sorry it worried you any over the years.  I love you Cuz.  You didn't deserve that.

Jimmie's Miracle at Christmas - Yet another reason to adore Santa Claus

Jimmie is 4 1/2 now.  The first 3 years of his life were spent seizing and working.  Working to learn to crawl and play and walk.  He has a few words, but he rarely repeats them.  He is still non-verbal.  But this is not about what Jimmie is unable to do.  I want to tell you a little about what he can do!

It was November 2008.  I was very pregnant.  Jimmie was going through a rough spot with his seizures.  Christmas that year, I counted 24 in one day, and that was stopping counting at 24 because I just had had enough.  But back to November.  He was seizing on average 10 to 12 times a day.  But I never let that stop me from taking him places.  He liked to go out.  He enjoyed riding in his stroller and watching people. 

It was after Thanksgiving.  The Festival of Trees at the mall was over.  Santa Claus had set up his photo booth.  And I was bored. 

So I took Jimmie to the mall to walk.  I pushed him around a few times.  I took him to JC Penney and bought him some new shoes.  He seemed to like them.  He had AFO's, but I had not put them on him for this trip, just socks.  So I stopped at a bench and put his new shoes on him, sans AFO's.  He kicked happily, looking at the shoes on his feet.  We were right by Santa at the time.  I thought, hmmm.

So I pushed the stroller over to Santa.  There was no one in line, but no sooner had I gotten there, than a little girl came in behind us.  I heard her parents say, "Watch the little boy walk.  He's bigger than you."  I turned to say, "He doesn't know how to walk."  Instead I said, "We'll see if he does it."  They laughed, thinking he was just stubborn, not understanding.  And I didn't correct them.  I just unhooked his belt on the stroller.  He scooted forward and grabbed my hand.  My brain froze.  And then he stood up, still holding my hand.  He was grinning from ear to ear.  And he knew exactly where he was going.  Holding my hand with his little one.  He took a step.  Then another.  Then another.  Until he stood in front of Santa Claus.  He looked up at Santa with the biggest grin in the world.  And I had to wipe the tears out of my eyes.  He let go of my hand and did not fall.  He reached both arms up for Santa to pick him up.  Santa, being Santa, seemed to understand the moment, and reached down and lifted my amazing son to his lap with a hearty Santa laugh.  It was a great moment in my life.

By Christmas, Mommy had what she wanted for Christmas.  Jimmie could not only walk independently, he was running.  He was 2 1/2 years old.  He was seizing like crazy, but he could walk.  In time for his baby brother.  And then on January 6, the 12th day of Christmas, Mommy got her other wish.  The seizures stopped.  He went 4 months seizure free from that moment.   

Santa Claus.  You are my hero.

The beauty of words

Words have power.  There is no doubt of that.  They can hurt.  They can inspire.  They can change the world.  No?  How about, "I have a dream..."  Words have power!

I personally like simple sentences.   Short statements.  One complete thought.  Then a period.  Now I know what I just wrote is not grammatically correct.  Grammar and beauty have little in common.  The period means something more than there is a subject and a verb and maybe and object.  The period means, "Stop.  Think about the words you just read."   Now, I don't pretend there is great beauty in these little sentences.  But there is a poetry there.  And that is beautiful.  If only to me.

Alliteration and lists can be amazing.  Dylan Thomas was a master at it.  I mean, can't you just see a "bat black belfry"?  And can't you feel the "see saw sea with with you riding on it"?  And there is no mistaking his meaning in saying, "Lie down, lie easy.  Let me shipwreck in your thighs."  Not once does he say what he is really saying, but there is certainly no mistaking his meaning. 

So much so that my English professor teaching Under Milk Wood (English as in she was from England, living in England, teaching in England, and yes teaching English literature - nice little double meaning) couldn't even listen to me speak the words without turning a bright red.  It was a situation I found rather interesting.  She was very proper.  I was very American.  And in this particular, I was way less puritanical, though we in America are often far more puritanical than our English counterparts.  Though we are probably most often less proper, too. 

The ability to draw a picture in the mind of your reader and manipulate that picture is an ability I aspire to achieve.  I will never be a Dylan Thomas.  I don't drink enough.  I'm not sad enough.  I have no screaming demons acting as my muse.  But I do have Dylan Thomas.  And D H Lawrence.  And William Shakespeare.  And even Charles Dickens.  And especially Ernest Hemingway. 

You know it when you hear it.  You know it when the words soothe your brain and touch your soul.  There is beauty in words too. 

Dr. Doolittle, AKA, my father

Ordinarily, I wouldn't post a second blog on the same day.  I'm just not that interesting.  But after my ranting on the cold this afternoon, I spoke to my father on the phone.  His dog Lucy, who was very old, died on Monday, in her sleep, at his feet.  She was doted upon most of her life. 

I say most, because she came to my father when she was 1 or 2 years of age.  Someone dropped her.  She was a chihuahua/terrier mix.  A tiny little thing.  And someone dropped her and left her to die on our rural country street.  She raided the neighbors crab pots.  He would have shot her, but my father showed up and rescued the little black and white dog.  At first he offered her to my sister and her family, but she decided she did not want her.  Samantha, my niece, who was 3 at the time, and is now 20, named the dog Lucy first though.  But my father took the dog back. 

He already had a dog, Nickie.  Nickie was a toy poodle.  He and Lucy got along great though.  And soon Lucy and Nickie were both traveling everywhere with my father.  If he went into a store or a restaurant, he actually left his keys in the ignition, with the air blowing, taking the clicker with him, so that the dogs remained comfortable.  Nickie passed away a few years ago.  Leaving Lucy as the sole benefactor of my father's affection.  Well, not counting his human family of course.

My father has always been something of a Dr. Doolittle when it comes to animals.  At one point I began to believe that people were dropping their animals in our yard on purpose, knowing that my father would care for them and the animal would prefer him to their sorry existence at whatever home they were expelling said animal from.  And even dogs that had perfectly good homes seemed to prefer my father.  At least two of the series of animals that became ours were neighbors' dogs first, Reuben, a Australian Cattle Dog, and the love of my teen years, Sam, a big brutish St. Bernard.

And then there was Daisy.  Daisy never became our dog.  She belonged to my father's cousin.  He was a hunter.  He subscribed to the theory that if you starve the dogs, they will be hungry and hunt better.  But Daisy had pups.  She broke free of her pen, and came limping into our yard, so starved she could barely stand, and teats so swollen they dragged the ground.  My father fed her.  She continued to come to us every day.  She gained weight.  One day, my father was in the yard playing with Daisy.  His cousin drove past and put two and two together.  He stopped in the middle of the road and yelled out the truck window at my daddy to stop feeding his dog.  My father never cared much for this particular cousin.  And this was just a little too much.  It was the first time I ever heard him use the "f" word.  He squared his shoulders, threw back his head and told his cousin, "Any f'n dog that you have that comes into my yard will f'n get fed, since you don't feed them yourself.  f off."  Wow.  The cousin drove away.  No more about feeding Daisy.  But she stopped coming around once her pups were weaned.

And it wasn't just dogs.  Cats.  Horses.  Our pony Ginger followed my daddy around like she was a puppy herself.  Followed him right into the house one day.  My mother had a fit.  My sister and I thought it was hysterical.

And now, my father's only surviving dog has passed away.  He has no more animals at home.  And he is a little sad tonight.

Rest in peace Lucy.  Your daddy misses you.

Brrrrrr It's Cold Outside

Weather.com said it was -22 this morning.  It was a misprint.  But don't get too excited.  It was really -8 with a windchill of -22.  Oh how I miss Virginia.

Last January when we left for Jimmie's Make-A-Wish trip to Florida, at the moment that the limo pulled out of our driveway, it was -9.   I wish we could do it again.  Florida was so much more comfortable.

When I first moved here, the winters were not that bad.  A few inches of snow.  Over at the regular time.  Not too cold.  David said it was unusually warm. 

So now we have the normal Northern Illinois winter, at least for the last 3.  And I am not liking it so much.  I don't mind a little snow.  I don't mind a little cold.  I liked being one of those people who thought, "Well once it is freezing it can't really feel all that much colder.  Freezing is freezing, right?"  UH.  NO,  Believe me you absolutely can feel the difference between -8 and 32 degrees.  At -8, you walk outside and your fingers instantly start to hurt, even if you are wearing gloves. 

So here I am, sitting in my living room, shivering, wrapped in a blanket, wishing for Florida, or even Virginia.  Did somebody say something about global warming?  Can't prove it by the blanket of solid ice coating my driveway.  Or that pile of snow covering my mailbox.  Or my poor stinging fingers.

Brrrrrrr.  It's cold outside.

How do you do it? What a question!

Jimmie is moderately to severely "developmentally delayed."  That is a really stupid term.  He is not delayed.  He will not catch up.  He has challenges.  He won't overcome them.  He is a 1 year old in a 4 1/2 year old body.  There is some good news.  His teacher sent home a note the other day saying at times he acted like a 2 year old during the day.  He is developing, but he will never be on curve with his peers.  That's okay.  Jimmie is Jimmie.  He's wonderful.  He's the most loving child in the world.  He knows how to hug you and melt your soul.  His smile lights up the entire world.

The thing is, people will ask about Jimmie, about how he's doing, and when we tell them, we get two main reactions.  One is the conversation ends.  I can handle that one.  What is there to say, really?  It is a reaction that makes sense.  There is nothing you can say to alleviate our burden in knowing our child will forever remain a child.  You can't take away the sting of other words, the one I refuse to use above, even though it is by far the best word to describe the situation, because of the stigma it has and the hurt it causes when it is misused!  You can't do anything or say anything to make any of this better.  Ending the conversation is good.  You asked.  We know you care.

The other reaction is to admire us.  The person shakes their head, and says solemnly, "How do you do it?  I couldn't do it."  Well first, that's bull.  We are not special.  We are not stronger or more loving than you are.  Second, you just do it.  You live the life God gives you.  Period.  And to tell me that I am special somehow, well that just makes me feel worse.  That just makes his differences sound like they are way worse than they are.  Seriously...Think about what you are saying.  "How do you 'do it'?".  "Do it" means love this amazing, wonderful child enough to care for him despite his "challenges."    By juxtaposition, you are implying he is unworthy of our love and care.  And boy is that ever wrong.

Now don't get me wrong.  I know that you don't mean that when you ask me how I do it.  I know you mean to pay me a compliment.  And I do accept it as such.  I am grateful for your attempt to comfort me.  Really I am.  But honestly, I know the truth.  I am not special.  I am not stronger.  I do it because I have to.  And so would you if you were in my position.  And loving a child is never really all that hard.  It doesn't take that much effort.  He's lovable. 

Now that is not to say that there aren't bad people out there who couldn't or wouldn't do it.  I know that.  But they aren't the majority.  They certainly aren't the good, kind people I know and associate with.  The people who I call friends...my friends, you could do what I do. 

A moment's peace...and random thoughts

My kids are sleeping. 

Charlie ate two whole dinosaur shaped chicken nuggets for lunch and then asked for his baaaa.  He went right to bed as usual without a fuss or a fight but with his baaa, his blankie, his BoBo (bear) and a truck. 
Jimmie has been asleep for a while.  He had to wear a sweatshirt and a coat because we went out to get the oil changed, and he hates clothes.  The wonderful world of autism...undiagnosed, but who do they think they are kidding?  Anyway he was really good at the dealership, but a holy terror at the grocery store, thanks to the clothes and the flourescent lights.  When we got home, he wouldn't walk to the door and made me fall into a snow bank.  He screamed for another hour or so, even though I took off the coat and hoodie as soon as possible.  Finally I just sat with him, much to Charlie's chagrin because he has major issues sharing Mommy ever since he has turned two.  He cuddled down into my arm on the couch and fell asleep. 

That leaves me with a moment's peace.  Two sleeping children!  It so rarely happens! 

I should make better use of my time.  I should fold the mountain of laundry.  But I know very well, I'll never finish it before one or both of them wake up and they'll just unfold everything and make the mountain worse.  So instead, I watched The Young and The Restless and The Talk.  Eh, The Bold and The Beautiful was on there in the middle, but I don't really care for it but am too lazy to change the channel.

I worked on our taxes some.  But there isn't much more I can do.  My aunt has to give me the K-1 information.  I love her dearly, but the K-1 is a yearly bone of contention.  By law, we're supposed to get all tax information before the end of January, but she never gets the information until much, much later.  I'm sure the lawyer has the information by the end of January, and that's how they get away with it.  She has to make an appointment with him to get the K-1's, and I feel in my heart that it really isn't her fault.  I understand that, but wow, we need the money.  Our check engine light just came on.  The diagnostic says it's something with the cooling fan.  We have an extended warranty on the vehicle, but there is a deductible...$500 I think.  And we need new tires and new brakes, another $1000 easily.  It's not something that can really wait.  I NEED THAT INFORMATION NOW.  Oh well, it's beyond my control at the moment.

Trying out blogging...

Well here I go.  Trying out blogging.  Why not?  I need to write a little more.

Allow me to introduce myself.  My name is Lacynda Mathes.  Lacy.  I am closing in on 43.  I waited until I found the right man to get married, and I wasted my youth on being single.   I met David online way back in 1999, on Excite.com in the film trivia chat room.  It was love at first...uh...sight...sorta.  Anyway, we talked online and on the phone for months...9 to be exact.  Then we met in person.  I traveled from DC to Chicago to meet him.  In 2001 I made the move from VA to IL.  Quit my job.  Left my family.  Made my own life.  In 2003 David and I were married.

On June 23, 2006 we gave birth to our first son.  At 4 1/2 months of age, he started having seizures.  He was diagnosed with Infantile Spasms, a devastating form of epilepsy in infants, also known as West Syndrome.  It was a terrible time in our life.  Terrible and wonderful.  We love our son so much.  His problems were just part of him.  And loving him meant neurologists and hospital stays and EEGs and therapy and learning a whole new language.  But love is love.  He is the light of our life.  His name is James William, Jimmie, after my father and David's father.  He is beautiful. 

At 20 months his diagnosis changed to Lennox-Gestaut Syndrome, another devastating form of epilepsy in children, associated with multiple intractible seizure types and mental retardation.  I hate that word.  I use developmental delay, but that isn't quite right either.  Delay makes it sound like he'll catch up.  He won't.

In 2009, we welcomed our second son, Charlie.  He's two now.  He's wonderful too.  And loved so much.

Well, that's who I am.  We'll see if I can do this or not.