Category Archives: Ethan

So, So Sick

Ethan is sick. Poor guy. It sounds so simple, but it’s not. The final diagnosis is pneumonia – just like Gavin and I.

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We have a pull out couch in our kitchen – thank goodness. It has served us well during the last few weeks.

We’ve come to call Ethan ‘the ox’, because he misses so many illnesses that come through our house. It is really shocking given the circumstances that we faced the first seven years of his life.

As an infant and young child, Ethan was often critically ill with breathing troubles brought on by both reflux and a cruddy immune system. Sure, he had the ‘normal’ kid stuff – but he got things twice as bad, they lasted twice as long and he got them five times more often than other kids. He had scarlet fever – several times. I cannot count the amount of times he had Coxsackie, Fifth’s Disease, Roseola or Rotovirus.

Oh God. Rotovirus. May you NEVER.

It is hard to remember. It is hard to go back. They were very lonely days for sure. I marvel that Dennis and I so quickly developed a skill set that allowed us to do it on a near-constant basis. We planned our first ever family vacation when he was almost 7. In NJ. We lasted 4 days…before he got sick.

His current illness reminds me of that time. It also reminds me of how blessed we are that him being this sick has been few and far between in recent years. We are so fortunate that he got stronger and healthier. We know kids who did not.

He has come so far it’s remarkable.

I never forget that Ethan is loud, demanding, funny, obsessive, opinionated, silly, and requires ‘line-of-sight’ supervision.

I do often forget that he is really remarkable. Truly.

“There are only two ways to live your life. One is as though nothing is a miracle. The other is as though everything is a miracle.”
— Albert Einstein

Be A Ghost

When Ethan is in a particular mood, on most afternoons after school, he perseverates on a certain topic.

‘You die mom?’

‘Mom, your dead. Be a ghost.’

‘Mom? Gonna die, mom?’

‘Mom? Mom. I love grandma. I love dad. I love Gabby-boy. Not you – I ‘X’ you.’

Then he makes the sound you would hear if you gave an incorrect answer on a game show.

Peals of laughter commence – only from Ethan, of course.

He goes on and on about me becoming a ghost and haunting our present house. He maintains that it will then become a ‘Spooky House’. He tells me that I am ‘old’ and ‘yucky’. He rarely expresses this about Dennis – and he is old and yucky too!

Sometimes I ignore him – to the extent that it is possible to ignore Ethan. If he chooses, he can keep this up for hours. Sometimes I respond.

‘Yes, E, we are all going to die.’

‘Yes, E, if given the opportunity I will definitely haunt you.’

‘Ethan, if I die, who is going to make the food and do the laundry?’

He says he’s going to take over. Maybe he could start that now?

He has expressed these sentiments from the time he was very young. We can come up with no good reason for this particular behavior – or so many like it. It is inexplicable – like so much about him.

It is a hobby, a habit, a compulsion. My mom is often concerned that it upsets me. It does not. I recently had a compassionate friend concerned that it is hurtful. I am not sure why it does not bother me. I don’t believe that he secretly hates me and also, a lot of what Ethan does is confounding. It is far from the most difficult facet of his quirky self.

It’s fine. I love Ethan enough for the both of us. And if it turns out that it is, in fact, possible to haunt him or become a ghost when I die – I’m in.

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“It’s how you ride the trail that counts.”

~ Dale Evans (Rogers)

Did you know that Roy Rogers and Dale Evans had a baby girl with Down Syndrome? This book is a little beauty.

Sunday Scenes – Think On These Things

In the bible, in the book of Philippians it states,

“Finally, brethren, whatever things are true, whatever things are noble, whatever things are just, whatever things are pure, whatever things are lovely, whatever things are of good report, if there is any virtue and if there is anything praiseworthy – meditate on these things.”

We are not a perfect family. We got ‘stuff’ going on. But when I post ‘Sunday Scenes’, I feel like I am embracing the above valuable truth.

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Someone special is getting this crocheted market bag – who could it be?

No joke. I like ALL of these. Imagine living with me and my Pandora stations.

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Pancake maker

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Coffee maker

Seriously, right?!

He colors. A lot. I think I’m going to to open an Etsy shop so that you too can own an Ethan original. If you want to be reminded to meditate on ‘what is pure’, artwork by Ethan would be perfect.

Go find some things in your home that are of ‘good report’.

Sunday Scenes – Still Snowy Version

When it's not about cars, it's about planes. Or trains.

When it’s not about cars, it’s about planes. Or trains.

A view from my shoes

A view from my shoes

Snuggle bug

Snuggle bug

Cara Cara Oranges by Sunkist. We've eaten 3 bags of them this week

Cara Cara Oranges by Sunkist. We’ve eaten 3 bags of them this week

 

Doodle Bug

Doodle Bug

Sundays are nice. So nice. Mondays are something to be tolerated. Ethan is off at school and The Boys are off skiing. I am here taking care of all types of business – from the ridiculous to the sublime. There are baskets of laundry and lists of phone calls, miles to be walked and two big jobs that I REALLY want to get done. I think I can….

Ethan, The (Non)Foodie

069He watches every episode of Diners, Drive-Ins and Dives. He comments and is intrigued by every ingredient.

“Bacon and eggs?!”
“Yeah, soup!”
“Big, big, big sandwich!”

He watches intently as someone renders duck fat, creates a roux, smokes the perfect brisket and mashes potatoes. He likes to eat and watch. He loves Guy Fieri. He wants him to come over for dinner.

But, Ethan would NEVER eat anything they cook on that show.

He has an EXTREMELY limited diet. 4 foods are in constant rotation. Like 1-2-3-4.

Quessadillas
Pizza
Popcorn Chicken
Bacon

For honesty’s sake, there is a very rare occasion when he eats something ‘new’. It is very rare and has never added that food to his rotation. Sometimes he eats 3/4 of something and then insists that it was ‘yucky’. Sometimes he requests something and once it is cooked or ordered – decides it is ‘yucky’. Frustrating does not do justice to this behavior. There are chips and salsa, and he will eat other things battered and fried – as long as it looks like popcorn chicken. 2 times a year, he eats a bowl of Cheerios.

Between the ages of 18 months and 3 years, the term ‘pediatric anorexia’ was used to describe him. Getting him to ingest anything was a daily struggle and a full-time job. It continued for many years. We have sought the help of many speech and feeding specialists – at one time he was in ‘feeding therapy’ 3 times a week for several years. We have worked with behaviorists and nutritionists. We have tried all manner of approaches. He is one tough nut to crack. Many kids on the autistic spectrum have ‘food issues’.

There is a lot involved in his eating disorder. Sometimes it makes life hard – and sometimes it makes it easy. Either way, we are stuck with it. And while Guy is profiling someone who makes the best blackened catfish with mango salsa, Ethan will be eating two slices of pizza – one plain, one pepperoni. Always.