Wednesday, May 23, 2018

Last day of 8th grade...

Today was Max's last day of 8th grade. 

He was quite unwell most of the school year, but he kept on smiling throughout.

His first day of school this year.

And here he is today, the end of his 8th grade year.

I've been asked multiple times this week if I was sad that Max was going to be in high school.  I haven't felt sad about it even once, every single year he moves on is a gift. This year has been a really trying year for him.  He's been so strong and still smiling through all of the pain he's had physically and emotionally this year. He's been so upset with not feeling his best, and just wants to continue to feel better.  He has a sparkle in his eyes and tells everyone who comes in, "I feel good." And that makes me so happy.

For his last day, he wanted to take his teacher on a walk to his pond.  We got there and it started raining so we booked it back home for him to chat just a bit before she left.

Mary asked for him to tell her good-bye for the summer and this was what he had to say.

He doesn't beat around the bush, this one.  He knew as soon as his teacher left, summer would begin.  He said it all with a smile and waved her good-bye.

I'm excited for him to have the summer break he's been wanting, and for him to start high school in August. His new classmates are so ready to welcome him into their class, and he's looking forward to having friends to interact with again at school.

Here's hoping for a happy, HEALTHY summer! So long middle school!

Monday, May 21, 2018

"Welcome to Holland"...

A few missing points from the story “Welcome to Holland”…written by Max's Dad. 

For those whose lives have been touched by having a disabled child, we know good and well that vacations rarely happen.

For those who have been blessed or challenged with bringing that child through the long fight into adolescence or adulthood, we know that it is a long journey.

The tenacity to fight to keep a child alive, to fight with insurance, to fight with doctors, to fight to keep your job is not reminiscent of the vacations we dreamed about or knew before our lives changed.

But for those who keep up the good fight and push toward health and stability for their child, perhaps even strive beyond keeping a job but excelling in your vocation, we know the journey is long and hard but something we must do.

Having been on this journey for nearly 15 years, I have recently found myself in Holland. A series of events and relationships evolved into a business opportunity in The Netherlands and from the moment I landed my mind has thought about the story “Welcome to Holland”.

While the story seeks to help you find the good and ‘lovely things’ in your new destination, it fails to capture the reality of this long hard journey.

For those who have journeyed long and found a new normal in this special flavor of life, you arrive in Holland reminded of the how terribly different your life experiences are from the people you pass on the street. Happy, sun-tanned faces, couples, families, holiday goers enjoy themselves while you traipse alone, through the streets.

What “Welcome to Holland” failed to point out was that if you eventually made it to Holland, you’d be alone. Your child with a disability probably wouldn’t be able to travel with you. Your significant other whom you had journeyed through this life wouldn’t be with you.

You’d eat meals in restaurants surrounded by happy couples and families and groups. Then perhaps you would wander to the ocean to watch a beautiful sunset as the sun descended to somewhere else on the planet.

You would sit alone until darkness came, realizing the journey that lands you eventually in Holland is one of loneliness.

So you buy souvenirs for your significant other who will never see this country with you, and you journey on.

Because the way you keep your disabled child alive and thriving is to walk the long, hard, uphill road that eventually ends you to the end of a lonely pier in a country you never intended to go to…alone.

Thursday, April 12, 2018

Max's lion story...

After music therapy today, Max wanted to tell a joke to Ms. Laura. 

Here it is...

joke about a little boy who is about to take a great lion on vacation

Oh no!

never even see it coming

his head was goodbye

boy was king now

lion was also going out for him head

feeling for it and it was over there

head goodbye

boy give him yellow different lion head

You think it's funny? I think it's funny.

I love it when Max let's his imagination run wild.  He's been so expressive lately and has really liked putting his "bang words" into his communication.  Like when he says, "Oh no!!", and "never even see it coming".

When he gets writing, I just let him go and ask questions later.  Once he finished it, I read it to him and laughed.  I told him it was really funny.  I asked if he was the boy and he told me yes.  I told him I was glad the boy gave the lion a different yellow head, and glad the little boy was the king now too.

He was really proud of his story, and thought it was funny.  I asked him if he wanted me to share it online and he said "Yes!"