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Ethan’s brain looks like swiss cheese.  In all the spots that are supposed to be nice and thick brain manner, Eth has empty spaces where lack of oxygen killed brain cells.  His MRI’s are insane, and don’t look anything like a typical brain.  And all because he was born with the flu. Goodness, is stuff like that really supposed to happen?  I think not.

Anyway, back to his brain.  Apparently it has decided to have an issue or two, and have caused the neurons to go bizerk. Isn’t that nice? Seizures, that dreaded little word that makes the breath in my throat stop, and my heart pound a million miles a minute.

I am pretty sure that Ethan isn’t supposed to ever, and I mean EVER have seizures.  We’ve talked about this a lot, God and I, and apparently he has other thoughts for my boy.  So, he might have some explaining to do, let me tell ya.

So far, two today. Out of left field. The last one he had was in August.  These are small. 35-60 seconds. Nothing like the long febrile seizure he had in December 2 years ago.

I just want you to know, I hate this. I really hate this. It terrifies me in a way I can’t begin to describe.

I’ve talked to the Bozark on the phone through out the day, and he has been pretty calm. Have I mentioned that he is the calm one? Truly. It’s kind of annoying. I don’t know if every couple is this way or not, but for us, he is the one who acts well under pressure, thinks clearly, quickly and responds appropriately.  That would not be me. Um, nope. Not me at all. ( I might be sarcastic when I say, annoying.  Either that, or jealousy. You decide)

We have decided that come early tomorrow morning, we’ll make the necessary calls and see what we can do.

I’m going to sleep by Ethan tonight, so that I can make sure he is safe.

I am trying to think good thoughts. I am trying to maintain my composure. I am trying to not kick and scream and yell and cry.  I refrained from taking him to the ER.

I can do this. I can be cool and collected. I can maintain my decorum.  I know I can. I know I can.

(Is anyone else thinking of a train?)

It is not often that I am rendered speechless.

I’ve been walking around for a week, trying to figure out the articulation to go with this photograph.

Last Wednesday, The Bozark and I, attended Ethan’s IEP Meeting at his local special needs preschool.

I really look forward to these meetings with the same enthusiasm as a root canal.

I have droned on and on about IEP’s (Individualized Educational Program) in the past. They are simply hard. A deficit based meeting where a group of people try to come together to create goals for the forthcoming year. Educational based goals, that then become a contract that the school district is supposed to honor.

For me with Ethan, in the beginning I was quite adamant about how many minutes he would spend with a speech therapist, to how often his wheelchair would be adjusted. I wanted hours of physical therapy and appointments with all kinds of specialists. I wanted him to have all of the interventions. I mean, the first three years of his life were about interventions and ideas to help fix, well, some would argue about the word “fix” but, help Ethan be as successful as possible.

When the world fell in, and Ethan was absolutely unable to attend school, my whole idea of what school meant for him, changed. Significantly.

The last two years have been far more of a lesson for me than Ethan. I’ve learned that my success scale was really off course for him. That my definition of improvements and milestones, were unrealistic. Those of you who have been with me from the beginning  have seen the dawning of this reality and  know—these have not been easy lessons for me.

Goals changing and taking form. From my original ones of, I want Ethan to walk, talk, communicate, eat, and not have issues with heat and cold. Which of course are all quite laughable now.

Now we talk about cause and effect and does Ethan know his name, and react to it, when it is spoken. Now the driving force behind our efforts is to develop some sort of primitive communication technique that helps us define even the simplest of choices.

Now, I just want him to be able to survive school and adapt to a slight change in his environment. My expectations have changed. My definition of success has changed. My ability to celebrate the tiniest of milestones has improved ten-fold.

We are all different.

So back to the picture and the IEP. I was so taken aback, to see Ethan smiling at school. Trust me, with out proof, I never would have believed it. Beyond just smiling. Ethan was interacting. The other children in the class, were building block towers on the tray, laying across Ethan’s legs. And then when it was time, Ethan’s assignment was to knock them down. He would laugh and giggle and knock the towers down, and the kids. Look at their faces. They are smiling and laughing. Not an ounce of nervousness, not a whisper of fear.

I am overjoyed. Amazed. Dazed. (don’t let me break into Neil Diamond song now).

I just look at this picture, and with it, springs forth hope.

Oh hope. I think I remember you. Hope. Like dragging yourself through the longest darkest winter, walking down the path one day and seeing that bright yellow crocus that has beaten the odds, and come through the cold season, to bring us color and mark our days with floral scents and a beauty that is so starkly different from the frozen, dull winter.

Hope, the precious commodity that yanks me out of bed in the morning, feeds my soul with the confirming affirmation of my Heavenly Father’s existence, and his beautiful awareness of me.

And I can’t help but smile.

Sheer joy. Just look at his face.

“You did the right thing this time, Mom & Dad. Keep pushing”

I’ve noticed the cycle of effort that seems to come with having a child or family member with a disability.  Much like the stages of grief. I’ve talked about that before.  I’ll be doing just fine, and then something happens, and I find myself back in the angry stage or even disbelief.   Though these feelings come and go, and I have learned to manage them better, they still crop up.

I was reading in a book about Babe Ruth.  One of Baseball’s greats.  He is a household name, and even The Bozark, who is not a sports fan in any way, shape or form knows who Babe Ruth is.  One thing that I was surprised to read, is that Babe Ruth holds the records for the most strike outs.

So in the batting rotation, one trip to the plate, every ten players, he would get up to bat, and give it his most.  His attempts are met with enthusiasm and expectations. His mighty swing would flair away from his body and often engage perfectly with the ball. Yet, there were also those darn strikes out!

I find it a parallel with parenting a special needs kiddo.  We get these ideas in our head. We work hard. We buy the equipment and register for the game.  Finally it is our turn at bat, and swoosh, that ball skunks right past us.  There seems to be a lot of that. Those balls flying past us.  We are not able to get all our ducks in a row. Something is out alignment. We have funding issues, or we can’t find the coach that we need.  We have stumbling blocks, that prevent us from actually getting to the plate.  We swing with all our might, and we still miss the mark.  Our child doesn’t respond to our tactics.  Strike one, we adapt for the next go round. We change the parameters, the second ball swishes past and we don’t even swing.  Third time.  We almost have it. We nick the end of the bat with the ball, and though it doesn’t give us the desired effect, it gives us hope. We buck up, suck our stomach in, and prepare. Here comes the ball again, and it flies right past us again.

Defeat is everywhere around us.  The smell of it is in the air, we have that humiliating long walk back to the dug out.  We even feel like we have people cheering for our misfortune.  Like any other slugger, it is tough to put so much effort into getting up to bat, only to have our efforts not come to fruition.  Going back to the dug out, and waiting for yet another opportunity to try yet again.

It can be so disheartening.  Yet, out there lurks the greats. The people that are successful. The stories that make us smile and the lives that we cheer on from the sidelines.  Thank you so much for the example Babe Ruth, and  Mrs. Organic, or Wes’ Stories.  Folks like, Mel and Amy.  They give me, courage and the hope for more successes than failures.   Every time I get up to bat, I have my whole team with me. Chronicler and Melissa C, Yolanda, and S’mee.  I know, with every swing no matter which way it goes. My team is there behind me. Cheering.

Thank you so much for that.  It makes that lonely walk out to the plate, oh so easier.

All of us battle. Each and everyday we get up to the plate for our children, our families, our goals, and dreams.  We hang on tight to that bat with all of our might.

May we ALL have more successes than failures, and may we recognize that we are never alone.  Silently or with a screaming chorus, we have those, “Greats”… reminding us, to never stop getting up to bat.

On December 18, I took Ethan to the ER, because he was not breathing. He just wasn’t getting air. Some cold or flu like symptoms proceeded it, but really just in a few hours it became so sever I decided to take him to the Emergency room.

He was diagnosed with tracheitis. What ever the smack of budda that is. They gave him breathing treatments and steroids.  After monitoring him for a while, they sent us home. The difference in him was quite remarkable. Since then though, he has not quite been the same.

His adgitation is quite evident. His sleeping pattern is quite off. He is tearful and often inconsolable.

I’ve been trying to figure out what is going on with him, and low and behold, he is getting some new teeth.

Just what our little chomper needs. More artillery.

Goodness.

He yawn, I glanced at his mouth, and way in the back he has purple gums, swollen with little white sharp edges starting to emerge.

I am sure if he chewed on anything other than human flesh, it would help facilitate teething process. I’ll bet for most five year olds, it isn’t a huge deal. Well you know our little man, he of course requires uniqueness and attention.

So here we are at 5:00 AM, bright eyed and bushy tailed, and listening to Emerson Drive, (his new favorite group) over and over and over.

This is fun, right?  I think it is.  Oh I am sure it is. Positive.

Hum, maybe I’ll go get Dad, he surely does NOT want to miss out.

HA!

• Work, Work, Work.  I worked many hours in December, and did a lot of volunteering. I had some really neat and memorable experiences. I am enjoying every day, learning something new from the folks that I work with, and also about myself.
• My Sister’s Birthday.
• Mom and Dad’s Wedding Anniversary. Which was never celebrated by us kids, but always marked an important date for us.  Christmas Tree went up, and poinsettias delivered.  My Dad always made sure I had one. Such a silly little thing, but, a tradition that always meant a lot to me.
• Saw Glenn Beck’s, “Christmas Sweater”, and was amazed. Was able to attend with family that made the whole experience so much better.
• Festival of the Trees.  A truly humbling experience. If you can, and haven’t, I would suggest adding it to your Christmas experience next year.
• Lights at Temple Square. Simply WOW.
• Snow, snow and more snow. My heavens. For the snow.
• Lots of long, good soaks in the bathtub. I am so grateful to have a place to soak.
• Poinsettias. I didn’t think I would get one this year, but I did. Made me smile and cry.
• A trip to the cemetery, in a snowstorm and a million mile an hour winds, just to place poinsettias and garland on the gravestone. (A mere 4 hour drive, one way. Oh please explain to me, why this is so important to me)
• Visit with my cousin and her fun girls.
• My Mom’s birthday, came and went and with it many memories that flew across my mind. Man I sure do miss her.
• Beautiful Christmas, full of really neat surprises. I am one lucky girl.
• Snow, snow and more snow. Did I say snow?
• Ethan’s 5th Birthday. It came and went with little fan fare. Lots of tears. Every year I promise myself, it is going to be a big day for Ethan. Every year, I can’t muster much enthusiasm for this date. Man, I can’t believe that he is five. Five.
• Time off, between Christmas and New Years- It’s been nice, hard.

It’s spectacular, this Autumn that we are having. Typically fall lasts in Utah about three days.  Summer heat, then one day of rain ,and then snow.  That is how it goes.

This year, maybe due to global warming (if so, please bring it on), the days have been cool but bearable and the nights with just a hint of frost.

We usually have colored leaves still on the tree when we get our first real, stay around for a day or two, snow.  Again, not this year. The trees are bare, and the ground is covered with crunchy fall leaves.

I love autumn sunsets. They are usually so orange with streaks of pinks and purples. Come winter, they will change and be much, much more pink.

I have really enjoyed these glorious days. Sweater weather. Perfect.

Ethan has such a bright light. Sometimes I forget that.

He has been so wonderful lately.  His laughter and giggles spill over into the house all the time.  His whole body moves. It is hilarious.

Ethan has his own sort of crawl. It is so funny to watch. He uses his feet, arches his back and scoots on his sholder blades, across the floor.  When for what ever reason, this method isn’t used, then he rolls. Back and forth, to and fro. He has that mastered.

He loves to pound his left hand on things. The stereo speakers, kitchen floor, ocassionaly on a toy. He loves to scoot close to the wall and will bang on that.  I’m not sure if it is the loud noise it makes or if it is the vibration.  He will pound for a while and then just roll over and giggle.

His laugh is infectious. Becareful, because if you come ’round, you are sure to get the virus. “Laugh-citis”

It is hard to maintain a stern voice around him. Yelling at the other kids, only brings on a bought of giggling from him, that ruins any sort of bad mood.  It is highly irritating. (smirk)

A sneeze, a cough, clapping, banging, dropping a cup in the kitchen, stumbling over my feet and falling on the floor, they all bring forth a series of laughter that is bound to provoke smiles, even from the most determined not to smile teens.

Ethan doesn’t like to be left behind either. He makes his desires well known, that if we are in the kitchen, he wants to be there with us.  He can’t abide silence. He loves music and is obviously effected by his enviornment.

One of the most interesting things about Ethan, is that he bites his index finger on his left hand, before he rolls over. He gigles and laughs, makes a gutteral gaaaaaaaaa sound, moves his hand to his mouth, bites his finger and rolls over. It is quite entertaining.  He gets pretty annoyed with me when I wrap my hand around his and prevent him from biting on his finger. He jutts his hips up and protests with absolute vigor, and wrestles until he gets his finger back.  It has an amazing callos on it.

Lately, Ethan has been using his left hand, to wack his neck. He bonks it, over and over in the same place. Not hard enough to hurt, but for some reason doing this makes him laugh.  Someday he will explain to me, what this bizarre behavior means.  However, it is very funny to watch.

I’ve noticed that Ethan has his routines. He is not a morning person. (Thank heavens) He is quite in the morning. Watches the rays of sunlight as they streak across the room. He is doesn’t make much noise and it usually takes him a few minutes before he will drink his bottle.  He loves to listen to “Signing Time”, and doesn’t move much.

By noon, he is his happy-go-lucky self and is in full swing.  Peels of laughter and grunts are heard through out the house. Ethan does not like it when we cook or eat. He gets all sorts of upset. I am not sure it is the smell or what, but he clearly is aware when we are eating and makes it very wll known, that he does not approve.

He is as nocturnal as a bat. He is wide eyed and loud as can be, come nine or so.  He laughs and arches his back and moves all around the house.  He loves to suck on the wall, where the corner juts out. He mouths everything. The carpet, the sides of the couch, and bites the legs on the chairs.  He pounds his hands on the entertainment center. He loves to pull books off the book shelf, and he loves to bite on the hard back books and licks them as well. It is so discusting. Funny, but really gross.

And if that isn’t too much info, I’ll let you in on another familiy secret.  He loves to bite people. I mean, really really loves to bite people.  If you are sitting in a chair in the living room, you better beware, but Ethan has some sort of secert heat seeking skill. He’ll roll right up to you, and when you are not looking, he’ll try to take a big healthy chunk right out what ever he can get to. Oh, it’s funny. Everyone has been a snack for Ethan at one time or another.  He will take his left hand, but it on your leg, and then pull himself ever, lift his shoulders up off the floor and as if he were trying to sit up, pull his mouth to your leg, foot, hand, head, back of your shoulder.. and CHOMP.

In fact, I think that would be a good nick name for him. Chomper.  Because, he is one.

His love and light is so beautiful. I wish the whole world could see him the way I do.  If that were possible, it would be a much better world.

“Let us be grateful to people who make us happy; they are the charming gardeners who make our souls blossom.”  Marcel Proust

In an email from Ethan’s teacher I received quite a surprise.

Dear Lisa,

We feel that Ethan is progressing and doing well enough in school to add another day to his schedule. When we discussed this originally I know you were hesitant. However we are so delighted with how well he has done, I would just like to extend this invitation to him.  After you have time to consider this or if you have any questions or concerns please contact me.  We would love to see Ethan more often.

Miss K

Who would have thunk it?

And ya know what? It is all very true! He has been doing very well.  His trips to school have been pretty successful. He’s come home in a good mood. He has been receptive and cheerful. He has learned to self calm, some.  It’s been wonderful.

On the heels of this complete and utter surprise, is also Ethan’s ability to eat has been improving.  He has been doing so much better.  Vanilla yogurt and pears are right up his ally.  They have been working with him at school and we have been trying to use the same techniques at home.

It is more than time to do the happy dance.