Monday, October 5, 2020

What They Don't Know

This Boy

Ten years ago he crashed into our world.

A Lost Boy.

He spent his days sitting inside a shed.

Surrounded by 20 other miserable, biting, howling boys.

He was so precious. Locked inside his silent world where he had hidden.

So cautious.

His moods ranging from a smiling adorable dimpled six year old to haunted eyes to screaming fits.

He surprised us.

We were told he was severely mentally disabled but in those first days - he surprised us.

Though he did not understand a word spoken, he sat quiet and listened as we read book after book to him. He drank in the pictures. Memorizing them.

Later - when he escaped his hell - and we walked the streets - he would point - showing us things that were in his books.

His fingers were stiff and unyielding. But he could draw with his toes.

All he needed was a stick and some dirt.

He spoke only a few words. The trauma of the shed shut him down.

But that didn't stop him from laughing. He surprised us with his laughter.

We found little pleasure in where he lived but joy burst out of him.

He smiled. He laughed.

When we weren't there they made him sit. Confined inside a shed.

Or locked inside the building.

Our boy. He was never made for sheds.

He was never made to be confined.

Ten years ago he broke free.

Ten years ago he left hell. He said goodbye to the sad world of the Lost Boys.

I marvel at his resilience.

He astounds me at all he has done these last 10 years.

That severely mentally disabled boy loves books. He loves to read. He flew through series after series this past summer.

He loves to sketch.

He loves to build.

He loves machines and ships and planes.

He never shuts up. He still struggles to fully express himself, but he uses 'Aaron-speak' and always gets his point across. And he is always talking. 

He is in high school now.

It's a challenge but he is making it.

He has to work twice as hard as the other students but in Aaron-fashion - he just plows ahead.

It's hard being Aaron.

What he lost in his first six years is not easily made up. 

His arms and hands are unforgiving.

He walks on legs that don't move with ease.

When we first came home he endured months and months of castings and surgeries on his feet and knees so he could walk without falling. 

Then surgery on his arm so he could feed himself.

At first it worked.

But his arm grew. And it turned. And so he had another surgery to reposition it. 

But then his elbow froze.

It is now unbending. Unyielding.

He's had more surgeries on his other arm and thumbs to make them more functional.

Function for him is nothing like function for us.

Yet he never complains. Ever. 

Life has thrown him a lot of curve balls.

The mountains he has to climb on a daily basis would put most of us to shame.

He has expressive and receptive speech disorders - again from six years of neglect.

He struggles to do simple tasks that the rest of the world takes for granted.

Yet he wants to do everything himself.

Don't tell him he can't.

Because he will figure out how he can.

He is a fighter.

My boy. He's a fighter.

In November we try again.

Another surgery.

It's number ten since he's been home.

This one has never been done on someone with arthrogryposis.

They are going to reconstruct his elbow. Round it out in hopes it will bend.

He will have two doctors operating and a lot of watchers.

He's already been told that it may not work.

He's already been told that the pain of therapy afterwards is going to be hell.

What they don't know is that Aaron lived in hell.

He knows all about it. 

He's tough.

The toughest boy I know.

We let him choose.

He didn't take that decision lightly. He spent time thinking about it. Weighing his choices. There is an easier surgery, one with less pain. But the results would mean a permanently stuck elbow.

He could have said no altogether. Just live with what he has now.

The pain is a huge factor. His doctor described it to him in vivid detail. Therapy will require an hourly 'ripping' of the elbow. 

But our boy is tough.

He weighed his choices and said yes.

Not that he's not scared. We are too.

We don't know if it will work. But he has nothing to lose and everything to gain.

And if it does work then it gives hope to other children with arthrogryposis.

He said yes.

He's going to tackle this surgery the same way he tackles everything else - with determination, resilience and a toughness that puts the rest of us to shame.

And we are going to be behind him cheering, praying and encouraging him all the way.

Friday, September 25, 2020

Racing After Mary

 It's a helpless feeling.

Laying in bed with little girl next to me.

2:00 am and her body jerks.

Just one time but I knew then.

I knew that status was coming.

I rolled over and snuggled next to her. Wishing I was wrong.


I was not wrong.

Two hours later it hit.

There was nothing I could do. We gave rescue as fast as we could but it was a bad one. 

That was last Saturday.

This morning again. Status. It took two rounds of rescue meds to pull her out.

If that was the whole story it would be bleak and sad.

But it's not the entire story.

Over the last 4 months little girl has turned a corner on day seizures.

To the point where there are some days when  you could count on one hand how many drops she had.

She wears her helmet to school but at home sometimes we can get away with just a headband.

She has occasional bad days. But most days she's beating the beast!

The middle of the night ones are outside of our control. She goes fast and we just race after her. 

The early mornings - each and every morning - that's where the real battle happens.

As soon as she moves we move. Getting in her CBD oil (prescription and extra) is our first line of defense. Between 5-6 am. It has a calming effect and will often relax her and let her sleep for a few more minutes. When she starts moving again we run - get her in the bathroom. Her system needs to clean out. It's a huge trigger.

Then downstairs. Normally she's out of it. Barely functioning. Seizure clusters washing over her. Her seizure pill is next. Getting her to swallow. Holding our breath. Swallow Mary. Swallow. Sips of Zevia. Yes we give her soda in the morning. It helps. It's all natural and tastes nasty. She loves it.

Then breakfast. With chocolate. It too is nasty. 90% but she devours it and we are realizing it too helps.

Each swallow a victory. Her one eye 'blown.' We watch it carefully. It's our tell. When it starts to focus with the other eye we start to breath.

She smiles. Her sassy mouth starts going. She's back on-line and dancing and singing.

Another morning won.

More and more we are winning.

Not always. Once a week or so we lose. Status like this morning hits. Or we lose her at breakfast time.

But not as much. And she's conquering the day seizures.

How? Why? 

We have no blazing idea but we have theories.

  • We removed all artificial everything. Only natural.
  • We stopped giving her cream - this wasn't intentional but she was fighting it so we switched to giving her straight oil for her fat 
  • She gets chocolate. Just about in every meal. Go figure.
  • We push fluids. Starting with Zevia in the morning, water all day and herbal tea
  • Her VNS is working at full tilt - it's been a year and a half since she had that surgery and it's doing what it is supposed to do...
  • Her CBD oil and the extra we give her is making a huge difference...
  • She is on one seizure med -  Banzel - which works on the drops. It has no behavior side effects (Praise the Lord) so we don't mind giving it to her
  • The Keto diet is our best and best defense. When she was tanking last winter the conventional wisdom was - her diet isn't working so let's get her off. My gut said no. It is the BEST defense for children with Doose Syndrome and I was not going to quit after two years knowing that if we quit, then our only option was surgery (separating the two sides of her brain) or more epilepsy drugs which do not work for her. So we did what seemed nuts. We increased her ratio instead of decreasing it. They went along because ... well... we have nothing to lose with Mary. And she breaks every other rule - why not this one! At first it was a disaster. At first she tanked and we worried we had made a mistake. But then slowly - oh so slowly - she started improving. Her day seizures slowly slowly decreasing. We have been holding our breath for months and months thinking it was just a phase and she would eventually break through but she is holding steady. Just nighttime and mornings do we battle. 
We don't know what is working and we don't care. We just know that she's better. 

We figure it is the full combination of everything.

It's helping us beat the beast.

Not counting this morning. Not counting Saturday.

We wish we could free her of the night and morning trauma. 

But we love watching her dancing and singing through her days without constantly falling and seizing.

We love that her language has exploded.

We love that her brain has days where it is wide open - not having to deal with the on again off again which happens with constant seizures.

We love this season with Mary and we are praying our hearts out that it only just keeps getting better!

Monday, July 6, 2020

Rest for Mom... Hmmmm...

We almost didn't come this year.

The yearly Reece's Rainbow reunion was canceled and we had resigned ourselves to staring at the four walls in our little house on the hill.

BUT... some of the families decided to join the 'A Mother's Rest' week at Yogi and we decided that a certain mom among us needed a rest from the four walls at home so we decided to join too.

So... yesterday.... we pulled into our favorite place.  

We made a mad dash to Walmart for our week's supplies. Set up our cabin... and here we are!

All of Mary's food was put together before we left thanks to some wonderful aides who spent an entire day measuring and cooking!

So no Mary food prep. That is a HUGE respite for me this week!

We already met the famous Reece and his mom (founder of Reece's Rainbow AND A Mother's Rest) in the pool this morning.

The campground is fairly empty compared to previous years so social distancing isn't a big issue.

We plan on doing a lot of swimming, reading, eating easy, fun food, roasting marshmallows and just being totally lazy!

Hopefully Little girl's seizures will be manageable because respite from that would be the best respite of all!! Thankfully, except for a few rough days last week, she has had a really good month...for Mary... 

Course I am really missing my babies back home (Rob said a certain little puppy was beside himself yesterday after we left), and leaving Rob at home was not my first choice but someone has to hold down the fort!

And of course I still have my computer and will still do BiblioPlan stuff because... it just never ends...

But despite a few inconveniences, I'm off to get some rest....

(Because this is the A MOTHER'S REST week)...

Of course someone needs to tell that to the three littles that I brought along because THEY think this is THEIR vacation!!

Friday, July 3, 2020

Our Little Secret

Abandoned. Lost. Ragged and scared. 

Starved. Covered in ticks and fleas. Infested with worms.

Just a little dog.

Hiding, trembling in the woods.

Weariness, hunger, sickness made him easy to catch.

Kind hands carried him to their house. Food. A safe place to stay.

Lost dog they cried. His picture shared hundreds of times.

No response. Silence.

They called him Walker. 

They asked us.

Would you care for this lost puppy?

Foster him?

Love him?

Stinking. Mangy. Sick.

We brought him home. Whispering words of comfort. His little body shivering. Scared. Who were these new people?

As soon as he could he ran. His little legs heading for the woods. Until he could run no more. Weariness allowed him to be caught and carried back home. 

But again, as soon as he was able he escaped - through the rail of the porch and dropping 10 feet to the ground. He ran. Again we gave chase. Following. Until weariness again overcame him. 

He cried all night. His pitiful howls broke our hearts. 

We washed him. Cared for him.

The kittens hissed and spit at first and then determined that he posed little threat. 

The vet gave us meds for tick fever and worms. They found a chip implanted and called his family. We reported him to the SPCA.

He made his home on our couch and chair. Rotating between the two places all day. 

We paid the bills and waited. Who would abandon this dog? 

His sweetness shining through his misery.

He stole our hearts but we steeled ourselves. We can't keep what belongs to someone else. We couldn't share. He was our little secret.

We fostered. And we loved. We let him sleep. And sleep he did. For days and weeks. Only slowly emerging back to life. Watching us. 

Wagging his tail with joy each time we loved him. Stroked him. Going outside only when coaxed. Terrified of being left alone. As soon as a door would open he was back on the safety of his couch. Back to the chair. Back to sleeping and watching. 

And our terror-filled pup found peace. He began to follow us outside. Trailing along behind.  When Rob installed a cat/dog door he was beside himself with joy. He could come and go at will. No longer terrified of being trapped outside. 

And today.

He's ours. 

No one responded to the calls. His family silent.

We can legally keep him.

Our little abandoned pup has found a forever home.

We call him Miles. Miles Walker. 

Our pup traveled many Miles before he Walked into our home and hearts.

He is perfect for us. Sweet. Gentle. Easy-going. He doesn't mind little girls who put pony holders on his ears or plays with her toys in his sleeping spot. He is fine with babysitting the kittens. He loves the craziness and loudness of our family. He is content to stay in our yard - roaming only as far as dad's house to peek in his windows and wish him a sweet hello. 

He came from trauma. He has many fears. But we understand trauma here. We are fine with giving space. We don't mind pups who need to feel safe on a couch and sofa. We are happy with him just the way he is. 

Our Miles Walker has come home. 

He's been our little secret.

And we are so thrilled!

Tuesday, June 23, 2020

PJ's and Hot Dog Roasts

We are still quarantined and trying hard to make the best of it...

PJ's all day some days.... and lots of nap times (but only for kittens)

Lots of reading times!

"The Spooky Old Tree" as read by Mary Nalle to Molly and Max...

Daily visits from my dad... and more naps in the most unusual places!

Cooking dinner outside..

And yes... PJ's and Sunglasses on Little Girl!!

Hot dogs and chips for dinner is the life!!

Roasting takes great concentration!

Proof positive that we are working hard at making the most of quarantine in our little house on the hill!!

PJ's and Hot Dog Roasts... and funny little kittens who have a way of keeping us chuckling!

Can't work any harder than that!!!