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The boys made a memory jar for Tim for Father’s Day.

I just knew there was no way they could create a piece of artwork or something homemade – the pressure would be too great and we’d end up where we were last year.

So I stole this gift idea from my friend Jess.

I asked the boys some questions and recorded each answer on a slip of paper.

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And because the answers were so perfect, I had to share them here.

What’s your favorite thing you did with Dad this year?

G: Learning how to play guitar and going to all the concerts

H: Going on the water slides at Great Wolf Lodge

L: Playing Hot Wheels

What is something that dad did that made you laugh?

G: All his funny jokes

H: When he said the slide at Great Wolf was like a toilet

L: When he calls things bathroom words

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What is your favorite thing that Dad cooks?

G: Homemade pizza

H: Pork chops, chicken skewers and hamburgers

L: Macaroni and cheese, grilled cheese and quesadillas

What do you like to do with Dad?

G: Go to Guitar Center

H: Go on water slides

L: Watch the Palladia channel on TV

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What would you like Dad to teach you this year?

G: How to mow the lawn

H: How to armpit fart since I’m not very good at it.

L: How to ride a bike with two wheels.

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Now my answers.

My favorite thing we did this year? We were a team – through school meetings and sports activities and everything in between.  You didn’t miss one baseball game or concert or IEP meeting.  You arranged your schedule to be there for the boys and for me.  We took “divide and conquer” to a new level to make sure each kid had alone time and quiet time.

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At the meet and greet with Joe Bonamassa

At the meet and greet with Joe Bonamassa

Something that made me laugh? I have many specific private moments when I laughed until I cried.  And then there were the times when I wanted to cry, you made me laugh instead.  Holding my hand through it all.

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My favorite thing you cook? Everything.  Duh.

That's right.  That's bacon wrapped meatloaf.

That’s right. That’s bacon wrapped meatloaf.

What do I like to do with you? Again, everything.

What would I like you to teach me this year?  I want to find my “fun” again.  I see how the boys turn to you for the games, the laughs, the “let’s do this” together.  You understand the boys in ways I can’t.

I want to learn all that from you.

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227620_10200398807759391_1141309109_nHappy Father’s Day

If I could save time in a bottle
The first thing that I’d like to do
Is to save every day till eternity passes away
Just to spend them with you

If I could make days last forever
If words could make wishes come true
I’d save every day like a treasure and then
Again, I would spend them with you

But there never seems to be enough time
To do the things you want to do, once you find them
I’ve looked around enough to know
That you’re the one I want to go through time with.” – Time In A Bottle by Jim Croce (which also happens to be the song from our wedding)

Dear Mom,

I was trying to think of something special to do or say  for your birthday today.

Sometimes – ok a lot of times – spoken words just escape me.

I know our phone conversations are short.

Sometimes it’s because of the kids – too much fighting/wrestling/smashing and crashing – and my attention goes to them and not you.

But most of the time it’s me.

I have words, just on the surface, but I won’t let them come out.

Too much emotion I guess.

Too many things unspoken after all these years.

Too much going on in my head about my life, the boys, everything.

I’m afraid that once I start, the flood gates will open and I won’t be able to stop.

But if there’s anything I’ve realized, though, after all we’ve been through…

If you don’t say it now, you may never get a chance to say it at all.

So I’m doing it in the way I know best.  In a letter here to you:

Thank You.

Thank You for being the glue that held our family together.  Even before Dad was sick.

Thank You for everything you gave up those 13 months.

Thank You for being the strong one.  When the rest of us were falling apart, you were there for us.

Thank You for speaking up at the Town Democratic Caucus during the conversation about who would step into Dad’s seat at the State House.  You spoke for me when I couldn’t speak for myself.

Thank You for standing by my every decision I made those two years following when I was at the State House.  You never once told me what to do. But always stood by what I chose.  Even when I knew it was time to leave.

Thank You for standing by every decision I’ve made period.

Thank You for hosting our wedding at your house. I knew it then but even more now how hard it was – emotionally, physically and financially.  You never said no.  You made our day magical and special.  Rainbows and all.

Thank You for being at our house when Gerry was born.  And for sitting with me in the hospital when Tim needed a break.

Thank You for being here with Gerry when Howie was born.  Knowing you were with him made those difficult days a little easier.

Thank You for staying at our house longer than planned after Howie was born.  And for convincing me through my tears that I could parent two kids.

Thank You for your immediate and complete understanding and acceptance of the boys and their diagnoses and special needs.

Thank You for the trips to Story Land, the Aquarium, and everywhere else.

Thank You for the hours on the floor playing with Hot Wheels and Little People and Legos.

Thank You for getting Gerry out of here for ice cream when he couldn’t be in the house one more second.

Thank You for showing me that hope and love springs eternal, and that new chapters can be written with new loves.

Thank You for understanding these days when I can’t talk.

Thank You for always having room for us.

Happy Birthday Mom.

Thank You for being my mother.

I love you.

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Well, I know it’s kinda late.
I hope I didn’t wake you.
But what I gotta say can’t wait,
I know you’d understand.

Every time I tried to tell you,
The words just came out wrong,
So I’ll have to say I love you in a song.” – I’ll Have To Say I Love You In A Song by Jim Croce

 

 

 

“It’s grief… it hits you. It’s like a wave. You just get this profound feeling of instability. You feel like a three legged table. Just suddenly… the Earth isn’t stable anymore. And then it passes and becomes more infrequent, but I still get it sometimes.” — Liam Neeson on his wife Natasha Richardson’s sudden death from traumatic brain injury five years ago from (his 60 Minutes interview)

It’s a funny thing.  Grief.

Funny is the wrong word.  Sneaky.

When I was thinking of a song title for my last post, I googled “father and son songs”.  And of course, Father and Son by Cat Stevens came up right away.

Cat Stevens was one of my father’s favorite artists.  I have memories of driving to school in his Volvo, listening to Cat Stevens’ Greatest Hits on the tape deck.

I clicked on the YouTube Video that accompanied the google link:

And I started to sob.

It wasn’t just the song that reduced me to tears in front of the keyboard.

Cat Stevens looks like my dad did when I was a kid.  He wrote words that would have come out of my dad’s head.

It was an immediate transport back in time.  Back to memories that are still fresh and raw.

I don’t really know how to explain these waves of grief, even 15 years later.  I think about him all the time in different ways.  Sometimes it’s just a news story on TV and I want to talk with him about it.  Sometimes it’s a memory that I can’t quite see in my head and I want to ask him what happened.

Sometimes it’s hearing about a friend battling cancer and me wishing I could do a million things differently all over again.

Those times come in and out.  It’s a brief twinge and then it’s gone.

And then there are moments when the grief feels all consuming. I get stuck.  Mired in a hole of what ifs and what should and shouldn’t have been.

Today could have been one of those days.

But I stopped and looked again at the photo that started it all.

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And I remembered that these are the times that need my focus now.

I can choose to let the grief send me down the rabbit hole.

Or I can choose to let the grief push me to see how important and precious these moments are.

Because a boy and his dad, reading a book about boats and engines?

That’s a really big deal.

It’s not time to make a change,
Just sit down, take it slowly.
You’re still young, that’s your fault,
There’s so much you have to go through.
Find a girl, settle down,
if you want you can marry.
Look at me, I am old, but I’m happy.

All the times that I cried, keeping all the things I knew inside,
It’s hard, but it’s harder to ignore it.
If they were right, I’d agree, but it’s them you know not me.
Now there’s a way and I know that I have to go away.
I know I have to go.” – Father And Son by Cat Stevens

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Just a boy and his dad, reading a book about boats and engines.

No big deal.

I took this picture last night right after dinner.  I hid around the corner so I didn’t disturb them (hence the really grainy photo and the everything out on the table and the lampshade in the way).

Monday was library day and Howie renewed his book about boats.

Tim picked it up last night and called Howie over to the table. “Show me the part in the book you like.”

Howie turned to the page with a cut away of a rowboat.  “I didn’t know you could sleep in a rowboat!” he exclaimed.

And what followed was THIRTY minutes of discussion at the table.  Of boats and cutaway drawings.  Of engines and pistons.  Of cars and trucks and things that go.

Questions were asked.  On both sides.

I took this picture and heading upstairs hearing “Could a really BIG crew fit on that boat?”

Now you know the autism parent in me wants to tell you all things autism that I see.

The joint attention.

The pragmatic language.

The shared interests.

The sitting and listening for 30 minutes (just hours after I filled out the Vineland saying he couldn’t do this).

The actual reading of a library book.

But not today.

Today I see a dad who found a common bond with his son.

I see a son who is soaking up every word from his dad.

And I see smiles from them both.

Just a boy and his dad, reading a book about boats and engines.

No big deal.

It’s not time to make a change,
Just relax, take it easy.
You’re still young, that’s your fault,
There’s so much you have to know.
Find a girl, settle down,
If you want you can marry.
Look at me, I am old, but I’m happy.

I was once like you are now, and I know that it’s not easy,
To be calm when you’ve found something going on.
But take your time, think a lot,
Why, think of everything you’ve got.
For you will still be here tomorrow, but your dreams may not. ” – Father and Son by Cat Stevens

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Connection

“Friendship is born at that moment when one man says to another: “What! You too? I thought that no one but myself . . .”” – C.S. Lewis

**********

Note in Howie’s log book last week from one of his 1:1 aides: “After social group Howie insisted on flapping his arms.  The group was not at all overly stimulating or excitable.  When I talked to (him) about this he said ‘sometimes autistic people have to do that thing.’ I said ‘stimming’? And he said ‘yes I need to stim and flap my arms’…he said sometimes he needs to flap if he’s excited.”

**********

Howie had his eighth birthday party two weeks ago.  We invited his whole class because, well, because.  I could give you some reason like making sure to include everyone but truthfully there wasn’t anyone he thought he couldn’t invite. He’s been with most of the kids for two years and he really wanted them all at his party. We did one of those indoor trampoline places parties because where else can you go with 28 2nd graders and contain them all?

I was nervous of course.  I don’t get to see how kids interact with Howie except for a few moments here and there.  I get the log book notes and information from teacher meetings, but I never see it with my own eyes.  I watched these kids interact with him – seek him out – not just because it was his birthday but because they care about him.  They told inside jokes on the bench as they waited for their jump turn.  They checked in on him when they were jumping. They jostled for position around him for cake.

When we got home and settled in, Howie opened his presents.  Some cards were on green construction paper (his favorite color).  Some cards had his special “Hero Howie” symbol on them.  All of the cards had special note, poem, story, or picture drawn just for him about him.  Every present was something he wanted that he didn’t already have.  I asked Howie how the kids knew.  “They asked me in school and I told them.” he said matter-of-factly.  Well of course.

That night I sent his teacher some pictures from the party with the note: “All those kids are quite incredible and so so good to Howie. They knew what he liked and how to interact with him.  That is all because of you. Thank you for creating a classroom and a space that allowed my kid to have his real big first friend party. You sure I can’t convince you to teach third grade? :)”

His fabulous teacher wrote back: “They absolutely adore him and are really cheering for him each and every day.  I’m so glad to hear that the party went well!”

**********

Note in Howie’s log book three weeks ago from his other 1:1 aide (paraphrasing): “Howie seemed to be having a hard time with his shirt.  It was making him uncomfortable all day and he couldn’t focus.  We sat and talked about the things that I am bothered by and he was able to work through it.  It really seems to help him when others connect with him about sensory issues.”

**********

From my blog post “Born This Way part two“:

I have spent the days since that moment we got Howie’s autism diagnosis in December 2009 wondering how I would talk to Howie about his autism.  I rehearsed it in my head many times.  Bought books.  Read blog posts.  Wanted to make sure I did it “right”.

We stopped at a light.

“So…” I said.  “That ability is a gift.”

“It is?”

“Yes.  You know what I mean by ‘gift’, right?  Not like a birthday party gift but more like a talent.  Something special you have.”

“I know! What is it? What’s it called?”

“It’s called autism.”

“So I have autism?”

“Yes.”

“Hmmmm.”

I decided to push it a little bit more.

“Hey, you know who else has a gift for seeing stuff like that?”

“Who?” he asked.

“Your friend Brooke.”

“Brooke has autism?”

AND THE BIGGEST SMILE FILLED UP MY REAR VIEW MIRROR.

**********

For some April is about Autism Awareness.  And that’s fine and good and it’s what works for them.

In our house, though, this month (and every month) is about autism connection.

According to the experts, that’s supposed to be something that my boys can’t do, right? Connect with others.

How wrong could they be?

I see connection every day with my kids – between teacher and student, between classmates and friends, brother to brother, and parent to child.

I see it in the children who come to our sensory gym. When families are given the safe space (physically and emotionally) for their kids to play, relationships and playdates and connections blossom.

For us- for my boys, for me as their parent, this month is about connecting  to find that piece – that tie that binds – to make one feel less alone.  To make one feel part of a community.

And for helping the world understand that community, one conversation at a time.

**********

From my personal Facebook status on March 31st:

When Howie is feeling “out of sorts”, he often asks for a “mom squish”. Probably because I am the squishiest of the bunch.

Tonight, I was complaining that my back hurt as I sat down crooked on the couch. He came over to me, looked me right in the eye, and said “do you need a Howie squish?”

It’s the eve of Autism Awareness Month and every day my kids smash and crash their way through every stereotype and every myth. But in our house it’s not about awareness. I want them to know that they are accepted, understood, and loved for who they are.

And those Howie squishes? They make all the aches and pains go away.”

IMG_3709Happy Autism Connection Month.

 

Why are there so many songs about rainbows
and what’s on the other side?
Rainbows are visions, but only illusions,
and rainbows have nothing to hide.
So we’ve been told and some choose to believe it.
I know they’re wrong, wait and see.
Someday we’ll find it, the rainbow connection.
The lovers, the dreamers and me.

Who said that every wish would be heard
and answered when wished on the morning star?
Somebody thought of that and someone believed it.
Look what it’s done so far.
What’s so amazing that keeps us star gazing
and what do we think we might see?
Someday we’ll find it, the rainbow connection.
The lovers, the dreamers and me.

All of us under its spell. We know that it’s probably magic.

Have you been half asleep and have you heard voices?
I’ve heard them calling my name.
Is this the sweet sound that called the young sailors.
The voice might be one and the same.
I’ve heard it too many times to ignore it.
It’s something that I’m supposed to be.
Someday we’ll find it, the rainbow connection.
The lovers, the dreamers and me. ” – The Rainbow Connection by Kermit the Frog

A great way to be part of the conversation is to purchase one of these #wearthechange shirts created by my friend Jess.  Through the month of April, the net proceeds from these shirts will be split three ways with the Doug Flutie Jr. Foundation for Autism, The Autistic Self Advocacy Network, and my nonprofit SenseAbility Gym.

Here is Gerry modeling his new shirt (he wanted to remain headless).  Click on the caption to go to the Zazzle Store.

Note: As I wrote in part one and in part two, I asked Howie if I could share this story here.  I told him that I had a blog and that I liked to write about things that happen in our lives on it.  His response?  “Sure.  You can share this with the blogosphere.”  Well, okay then.  And this time, I asked all three boys if it was okay to share the story.

Chronologically, part three came after part two but before part one.  But this is how it all came out here.

Over the past few weeks since the “big” conversation that wasn’t so big, Howie and I have been talking a lot about autism.  It’s not hard to bring it up – at the sensory gym we have a community bulletin board with information from our local autism resource center, the Doug Flutie Jr. Foundation for Autism, and Birdhouse for Autism (an app and web based application for tracking therapies, medications, sleep and anything and everything related to a child’s well being). So the word comes up whenever we’re there.

But it had always remained between us.

We’ve also had some discussions about other kids we knew who were autistic.  Friends who had given us permission to share that information.  Each time, it was met with a smile.

Yet for some reason, I never mentioned the fact that his younger brother was autistic too.  Again, this is on me.  In my head I still thought there had to be the right time and place to talk about it.  That Lewis should know first.  Or there had to be some specific chain of events to make it “the right way”.

Apparently, I don’t learn my own lessons.

Two weekends ago, all three kids were sitting at the kitchen table.  We were listening to music and the boys were talking about whether or not they had good hearing.  Gerry said that our whole family had bad hearing.  Before I could step in and protest with my expert hearing skills, Howie said “No, I have super hearing.  I can hear and see things that others can’t. I have what’s that word again?”

He paused.

“Oh yeah.  I have au-TIS-m.”

(so yes, the accent is on the wrong syl-LA-ble.  But still.)

Gerry looked over at me and didn’t say a word.  Neither did I.

“I have autism,” said Lewis matter-of-factly.  “I just have clogged ears.”

Howie looked at him and said, “You have autism too?  Well, you do have a super memory.  You know the whole grid of the Marvel Super Heroes characters on the Playstation game.”

“Yup,” I said.  “Lewis has autism just like you, Howie.”

“Does our whole family have autism?” Howie asked.

“No. ” I said.

Gerry looked at me and quietly asked, “Do I have autism?”

I shook my head no.

And that is how Lewis found out that he was autistic too. No big reveal. No grand plan. Just “yup, you’re autistic.”

Gerry got up from the table to get some more milk.  I pulled him aside for a moment.

I thought back to a conversation that Gerry and I had almost two years ago to the day:

“Don’t you think he should know about his autism?  So he understands?  I know most of his friends are from his school and are like him, so that’s really good.  But at some point, shouldn’t he know?  Because really?  Sometimes it’s very stressful for me that I know but he doesn’t.”  His eyes teared up a little.

I knew I had to choose my words very carefully here.  This…was important.

“Yes, of course he needs to know.  Dad and I just have to figure out the right time.  He’s only five.”

“Do you have friends who have kids with special needs?  Kids who are older?  Can’t you ask them when they told their kids?”

And then my kid wows me.  Again.

“You know, it’s not fair.  All his timeouts.  At first I thought they were good.  Teaching him.  But if he can’t help it, then the timeouts aren’t fair, are they? It’s like if you’re driving and your car’s wheels lock up.  And you hit something and cause a lot of damage.  It’s not your fault that the car didn’t work the way it should.  Right?”

I’m in awe of this kid.  Of how much he loves his brother.  Of how much he gets it.

“Mom.  Shouldn’t he know so he understands?”

I touched Gerry’s arm and brought him into the other room.

“You remember you wanted me to tell Howie that he was autistic?  Well, I did.”

He looked right at me.

“Thank you,” he said.

**********

Since then, the topic has come up quite a bit.  My boys – all three of them – are attempting to understand what autism means to them and for them.  There have been attempts at one upping each other with “well, my autism means I can hear the grass grow!” and it makes for a good discussion about how brains work and no, you can’t really hear the grass grow. In quizzing Howie if he washed his hands, he told me that only someone with autism could have good enough smelling to smell how clean his hands are.

Then there was Howie’s question to me one morning at 5am: if everyone in the world had autism, does that mean no one in the world has autism?

For which I had absolutely no answer.

Just this afternoon came “Is autism sensory?”

And of course there was the moment when he told me his gift was part of his soul. When he realized he was born this way.

But my favorite comment came from Gerry last week.  We were talking about how all of us in the family have brains that work differently. It’s important to know that and understand why so instead of getting frustrated and struggling with the things that are hard for us, we can acknowledge the challenges and use our strengths to cope with them. We talked about what I wrote in part two:

“At some point I know we’ll have to talk about the challenges that autism brings.  Because that is as important as knowing the strengths. Part of understanding his differences is knowing that the sensory issues, the difficult time sitting still, the frustration over school projects and social interactions, and the perseverations – these are not because he’s not smart or incapable. “

I told him that this was why right now we’re focusing on positives that come with autism for Howie.

“I like that,” Gerry said. “I like that he looks it like it’s his superpower.”

Me too.  Me too.

my three superheroes

my three superheroes

My mama told me when I was young
We are all born superstars
She rolled my hair and put my lipstick on
In the glass of her boudoir

“There’s nothing wrong with loving who you are
She said, “‘Cause He made you perfect, babe”
“So hold your head up girl and you’ll go far,
Listen to me when I say”

I’m beautiful in my way
‘Cause God makes no mistakes
I’m on the right track, baby
I was born this way
Don’t hide yourself in regret
Just love yourself and you’re set
I’m on the right track, baby
I was born this way” – Born This Way by Lady Gaga

For a great way to talk about autism with your child (or to learn more yourself), check out this great booklet from The Autism NOW Center and The Autistic Self Advocacy Network at http://autismnow.org/wp-content/uploads/2013/11/Welcome-to-the-Autistic-Community-Adolescent.pdf

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“Mom?  Will you play football with us?”

It’s a crisp fall day.  I was outside raking leaves while the boys ran around the front yard.  Leaf raking is sort of a zen activity for me.  It gives me a sense of accomplishment, seeing the piles grow as the lawn gets cleaner.  Until the wind blows and I start all over again.

Gerry runs over to me with a small Arizona State University nerf football in his hand.  “Mom?  Will you play football with us?”

I lean the rake up against the big tree in our yard as he calls his brothers over. I was hesitant to play, partly because I was finally getting a big pile of leaves but also because getting the three of them on the same page for any activity is difficult.  Their age differences and developmental differences make physical games tricky.  Herding cats is an understatement.

The boys decide that it will be Howie and Lewis against Gerry.  The two younger kids will be on defense.  Gerry comes over to me with the ball.

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“I’ll be the quarterback,” I say.

I have an instant flashback to when I was a kid.  My Dad has the football in his hands.  We’re in our backyard on a cold Vermont fall weekend afternoon. He’s in his tuque and his sweatpants taped up with duct tape with work boots on. He was always the quarterback. To make it fair.

“Can I be the quarterback?” Gerry asks.

“No,” I said. “I will be quarterback for both sides to be fair.”

I draw out a “play” on my right hand.  “We’ll call this ‘the button hook’ play. You go out eight steps, turn around and I will throw it to you.”

I see my dad drawing the same play in his hands.  “Go out 10 steps, then turn to your right.  I’ll throw it right to you. Watch out for that pile of dog poop over there.  And that one over there.”

I yell a bunch of random numbers and then “HIKE!” Gerry hikes the ball to me and tries to run the play.  The boys run all over the yard in no pattern laughing, trying to play their position.

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My cousins and siblings run around the yard, yelling at each other and laughing, trying to make the play.

“NO TACKLING!” I yell.

Two hand touch!” my dad yells.

Touchdown! Between the rake and the pile of leaves!

Touchdown! Between the broken flower pot and pile of hay!

We switch teams after the touchdown.  I stay at quarterback.

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We play until the sun goes down and my hands get too cold to throw the ball.

**********

In the Glee episode “The Quarterback“, the football coach and Puckerman (one of the characters) are sitting next to the memorial stone for Finn Hudson.  Puck looks at the line between the born and died years and says “You know what’s tripping me up? This line between the two years. That’s his whole life. Everything that happened is in that line.” The coach looks at him and asks “What are you going to do with your line?”

I see now my line is filled with being my kids’ quarterback.

I’m the one drawing up the plays on my hand on the fly.

Tossing them the ball as they get the glory of scoring the winning touchdown.

Guiding them through homework and relationships and teacher meetings and IEPs and therapy sessions.

All leading to their personal successes.  In their own way.

Honoring my dad’s memory with my old Target sneakers, faded yoga pants and torn fleece jacket.

Until they are old enough to be their own quarterback and figure out what they will do with their line.

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Today marks 15 years since my dad died.

I miss him every day in different ways. 

But I especially I miss him as my quarterback.

19544_1326211601980_499808_nTook this love and I took it down
Climbed a mountain and I turned around
And I saw my reflection in the snow covered hills
Till the landslide brought me down

Oh, mirror in the sky, what is love?
Can the child within my heart rise above?
And can I sail through the changing ocean tides
Can I handle the seasons of my life?
Oh oh I don’t know, oh I don’t know

Well, I’ve been afraid of changing
‘Cause I’ve built my life around you
But time makes you bolder
Children get older I’m getting older too
Yes I’m getting older too.” – Landslide by Fleetwood Mac

The American Cancer Society’s estimates for pancreatic cancer in the United States for 2013 are:

  • About 45,220 people (22,740 men and 22,480 women) will be diagnosed with pancreatic cancer.
  • About 38,460 people (19,480 men and 18,980 women) will die of pancreatic cancer

Rates of pancreatic cancer have been slowly increasing over the past 10 years.

Learn more about early diagnosis and treatment at http://www.cancer.org/cancer/pancreaticcancer/detailedguide/pancreatic-cancer-detection or visit The Lustgarten Foundation’s website

(Two of two parts of a Father’s Day. Part one is here.)

Whomever said “time heals all wounds” was full of crap.

Same person who said “God only gives you what you can handle.”

Words with no meaning. Not to me.

It’s the 14th Father’s Day without my dad.

It doesn’t get easier.  I don’t miss him less.

The memories I want to recall are fading.

I close my eyes and I try to think back on Father’s Days of the past.  I can’t remember any.  I’m sure they were filled with homemade gifts.  And food.

But when my eyes are shut I can only remember those last days.  The incredibly difficult last family trip to Florida with a hastily planned one day cruise to the Bahamas.  Sitting in the bleachers for his last over-40 baseball game during that sweet spot between one round of chemotherapy and the next. I see the last moment that we had together.

I sit here at the end of this Father’s Day.  And I’m lonely. And angry.

He’s missed the things a father should have seen.  My wedding.  My brother’s wedding.  My sister driving.

He’s missed the things a grandfather should have seen.  Gerry’s first time pitching in his little league game.  Howie’s elaborate Hot Wheels track creations.  Lewis’ first laugh out loud joke.  My nephew’s first birthday.

A few months ago, my uncle was in town.  He’s my dad’s oldest brother.  He asked to come out and visit SenseAbility Gym, the nonprofit sensory gym we started for kids with special needs.  My uncle – all of my uncles – have been incredibly supportive since we had the idea.  I went to them for advice, support, and help and they all came through, just like they have for the past 14 years.

I watched my uncle at the gym.  He played with my boys, his grand-nephews.  He asked questions and offered suggestions.

He said he was proud of me.

A few weeks ago, my mother came to work with me at the gym.  A special educator herself, she jumped right in.  I watched her play with the kids.  Chat with the parents.  She connected with them and offered support and advice.

She said she was proud of me.

I am so honored and lucky that they are there with me.

But as I watched them both my anger was bubbling up inside. Not at them, of course. But at what should have been.

My dad was supposed to be here to see this. This gym came about because of the values and skills that he taught me.  Making the world a better place from the ground up.  Connecting and communicating with and within the community.  Standing up for what you believe in even when no one else has done it before.  And all the while remaining present for your children, your spouse, and your family.

It was not supposed to be this way.  This is not how the story goes.

In the last few minutes of this father’s day, I cry.  I’m missing the conversations, the laughter.  His voice.

Time is not healing these wounds.  In fact, it’s making them hurt more.

It’s a tale of two Father’s Days for me.

The joy of watching my kids say “Happy Father’s Day!” to their dad.

The pain of not being able to say that to my own.

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Lying in my bed I hear the clock tick,
And think of you
Caught up in circles confusion -
Is nothing new
Flashback – warm nights -
Almost left behind
Suitcases of memories,
Time after -

Sometimes you picture me -
I’m walking too far ahead
You’re calling to me, I can’t hear
What you’ve said -
Then you say – go slow -
I fall behind -
The second hand unwinds

If you’re lost you can look – and you will find me
Time after time
If you fall I will catch you – I’ll be waiting
Time after time” – Time After Time by Cyndi Lauper

(One of two parts of a Father’s Day)

Because you are always there.

Because you see what I miss.

Because you haven’t missed a baseball practice.  Or game.  Or school show. Or IEP meeting.

Because you read the reports and read between the lines.

Because you enjoy being the “mystery reader”.

Because when I find only the negative, you show me the glass half full.

Because you understand what “he’s out of sorts” means and how to help.

Because you understand our kids in ways I can’t.

Because you get it.

And when I am done

and can’t read one more report, one more home log, one more email

or change one more diaper, fight one more clothing battle, listen to one more scream

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You are there.

Not out of obligation.

But out of love.

Showing our kids what a dad should be.

And for that and eight million other reasons.

I love you.

Happy Father’s Day to the man who makes every day better.

You are the bearer of unconditional things
You held your breath and the door for me
Thanks for your patience

You’re the best listener that I’ve ever met
You’re my best friend
Best friend with benefits
What took me so long

You’ve already won me over in spite of me
And don’t be alarmed if I fall head over feet
Don’t be surprised if I love you for all that you are
I couldn’t help it
It’s all your fault” – Head Over Feet by Alanis Morisette

I have had so much to write about and no time to do it.

But I had to share this.

I took all three boys to see a local production of the play “Annie”.

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“when I’m stuck with a day that’s gray and lonely…”

And we were able to go thanks to the incredible accommodations made by the Open Door Theater and the Autism Alliance of Metrowest.  They made it an autism-friendly show.

Which made it a family friendly show for us.

Read my review HERE at the Massmoms.com section of the Worcester Telegram.  And see why this experience meant so much to me.

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