Howie was on the floor of his room. He was wrapped up in a towel, drying off from the shower.

“Mom. Do I look in sorts?”

“I don’t know. Not really I guess. Maybe a little? Are you?”

“No,” he responded. “I’m a little out of sorts.”

“I could tell. You think it’s because you’re not feeling well?” He had been battling a mystery fever for the past two days. No other symptoms, just a low grade fever.

“No. Not that.” He was looking up – not at my face but just passed me.

I stood over him as he stayed cocooned up on the floor.

“Why do you think you’re out of sorts?”

“Sensory overload,” he replied. His eyes shifted and immediately connected with mine.

“Really. What overloaded you?”

He sighed.

“Life.”

Howie paused for a moment.

“Sometimes that just happens,” he said.  “I need a fidget. Like something rubber. Or a ball.”

He said it in a very quiet, almost nasally voice. It’s the voice I recognize when he’s uncomfortable.

I looked around quickly in his room.

“I found a small Minecraft Creeper figure. Will this do?”

“Yeah.”

He took it from me and smiled.

I took a quick picture of him on the floor with the creeper and showed him his happy face. He stayed on the floor for a few minutes, rubbing his hands over the figure and squeezing it.

I left the room to help Lewis into the shower. When I returned, he was dressed in his pajamas and in bed.

“Can I share the picture I took of you with the creeper to show people how you look when you’re back in sorts?”

He snuggled under the covers and grabbed his weighted stuffed animal.

“No,” he said. “Don’t share it. Can I have a Mom squish?”

I leaned over and squished him tight. Part of his self-advocacy has to be the right of refusal of what I share and what I don’t.

“I won’t share it. I promise. I love you.”

I took my position at the end of his bed. He slid his legs under mine and fell asleep.

**********

I could write about the sheer enormity of that conversation and what it means for him, for me, and for the people in his world. About how much hard work he has done with his teachers and therapists to get here – to not only understand his body but express it in a way that we could understand. I could write about all the signs I missed during the day today that could have told me what he so eloquently did tonight and even though I preach “behavior is communication”, I ignored it all.

I could write that.

But right now I am just listening to him sleep. Soft, even breaths.

The ones that I now recognize come when he’s back “in sorts”.

And I’m just going to stay here a while.

A photo from a different wrapped in a towel day. One that I had permission to share in the past.

A photo from a different wrapped in a towel day. One that I’ve had permission to share in the past.

 Walk with me the diamond road
Tell me every story told
Give me something of your soul
That I can hold onto
I want to wake up to the sound of waves
Crashing on a brand new day
Keep the memory of your face
But wipe the pain away” – 
Diamond Road by Sheryl Crow

“Can I help you find something?”

“Yes.  I’m looking for an end of the year present for my son’s teachers.”

“Can you tell me a little about them?”

“Well, sure.  I need something special.  I know we all say that, but I really mean it.”

I pause for a moment.

“My son calls himself Hero Howie at school.  But his special education teachers? Actually all of my kids’ teachers? They are heroes too.  His and mine.”

“I have just the thing.”

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Because you help my kid out of the car in the school drop off circle with a hello every morning.

Because you watch him in the cafeteria before school starts to make sure he starts his day off on the right foot.

Because you welcome him in to the school and know him by name.

Because you believe in him when no one else does.

Because you understand how a slight muscle movement or seat squirm or change in town of voice means he’s overwhelmed and needs a break.

Because you modify the assignments to fit my kid.  Not because he can’t do the work but because you know when he’s reached his limit.

Because you read books and websites and attend seminars outside of school hours to understand my kid better.

Because you love to come to work every day knowing that it’s about my kid and his successes.

Because it’s not just a job to you.

Because you see autism not as a limit but as his strength and step out of the diagnosis box to see him as an individual.

Because you understand that the aggressions are not personal but part of the fight or flight overload of the day.

Because you wake up after those tough days ready to teach again.

Because you celebrate his successes and stay up at night figuring out how to help him the next day.

Because you believe in progress not perfection.

Because you do cartwheels in the halls and make collages of every single picture you’ve taken of him.

Because you request to be my child’s aide and teacher next year.

Because you love him.

Because you taught him to love himself.  And believe in himself.

To Mrs. M and Mrs. C and Mrs. S at the elementary school and Mrs. M at the preschool…

You.  You are the heroes.

And for that, I am forever grateful.

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And then a hero comes along
With the strength to carry on
And you cast your fears aside
And you know you can survive
So when you feel like hope is gone
Look inside you and be strong
And you’ll finally see the truth
That a hero lies in you.” – Hero by Mariah Carey

 

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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)

note: I was given complementary passes for food, accommodations and other activities to attend the grand opening event at Great Wolf Lodge in Fitchburg, MA.  But all opinions are my own.

We had seen the commercials for a long time: Great Wolf Lodge was coming to the New England area!  My kids – avid water park fans but haters of bugs and heat – were so intrigued by the idea of an indoor water park that when we were offered the chance to be there on opening day, we couldn’t say no.  Even though it was on a school night.

We prepped for the trip the way we do with most new places.  I spent a lot of time with the boys on The Great Wolf Lodge website so not only did we know what would be there, we knew what rides and activities were going to be appropriate for their skill level and height.  They had pictures of the rooms online as well and we “walked” through the park, learning about each of the rides and requirements.  We created our own social story so there would be no surprises.

We arrived in the evening around dinner time and it was a little late for us to use the water park that night. There was no disappointment, however, since there was still plenty to do:

getting our wolf ears

getting our wolf ears

In the Howlin’ Timbers part of the park, there is a nine hole indoor golf course.  It was perfect for Howie and Lewis.  They had a blast playing the course.

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Mini Golf

There is also a giant arcade area near the restaurants and lobby.  Not surprisingly, this is where my kids wanted to stay the longest.  Like many arcades these days, the games are paid for on a pre-paid card so there’s no fumbling with money or tokens for each game.  I was amazed at how quiet the arcade was.  Usually arcades are not only my kids’ sensory overload nightmare, but mine as well.  The Great Wolf Arcade was quiet and calm. So we were able to stay and play for a long time.

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skee ball anyone?

Alongside the arcade is a pizza place and ice cream shop.  We opted for pizza to go and brought it back up to our room.  I have to tell you – I have incredibly picky pizza eaters.  The “Hungry As A Wolf” pizza passed the test from all three of them. That’s almost unheard of in our house.

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mmmmm…pepperoni

We were given a KidCabin Suite in the newest part of the resort, overlooking the Howlin’ Timbers play area.  The room was one queen bed plus a fold out couch and then a separate area with a bunk bed and day bed.  My kids settled into their own special area, which also has its own TV.  They were in heaven.

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Bottom bunk man. And yes, wifi is included free at the resort. We asked ahead of time.

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Oldest kid gets the top bunk

At the risk of TMI, this was the first time in our vacations as a family that Tim and I shared a bed at a hotel.  And the kids actually stayed in their beds.  That doesn’t even happen at home.

The kids had the buffet breakfast at the Lodge Wood Fire Grill restaurant in the morning.  Here’s where they were annoyed at me for taking a picture before they could eat:

ok...maybe only two were annoyed with me...

ok…maybe only two were annoyed with me…

There’s also a Dunkin Donuts on the premises for breakfast, lunch, dinner and whenever you need it.  Because this is Massachusetts and there needs to be one on every corner.  Thank goodness.

We hurried back to the hotel room to change into our swim clothes.  And off we went.

The water park area of the resort is split into two sides.  Great Wolf took over an existing water park area so one side is where the original park had their waterslides and the other side is all new.  It seem to cut down on the crowds and confusion and it wasn’t so overwhelming.  It also made it easier to find each other as Tim and I played “divide and conquer” with the kids.  He did the bigger slides with Gerry and Howie and I spent most of my time with Lewis in the Tadpole Pond area.

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obstacle course on Big Foot Pass

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The best way ever for my kids to fight each other

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lazy river riders

In all, my family tried out every ride at the water park.  Gerry’s favorite was the Howlin’ Tornado:

The Howlin' Tornado.

The Howlin’ Tornado.

That was the view of the Howlin’ Tornado from our hotel room.  Through the rain.  That’s right – it poured the whole day we were there.  Did we care?  Nope.

Howie’s favorite was Alberta Falls – the dark tunnel side.  It may or may not be because Tim told him it was like they were getting flushed down a toilet.

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Alberta Falls

And Lewis was incredibly happy to stay at the little kid area.  And I was incredibly happy to have him stay here.  I actually sat down.  At a water park.  It was a miracle.

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Life jackets are provided for all ages and all sizes at the park but we opted to bring our own.  Considering the fact that I brought three suits for each kid because I didn’t know what would fit or feel right for them in the moment, the more familiar we are with something, the better it is.  Our own life jackets bring that sensory comfort level.

Speaking of sensory issues, I kept checking in with Howie about how he was doing and feeling along the way.  The water park was not crowded but it was very echoey and I was worried that he would be on noise overload.  He kept telling me he was fine.  The only thing that seemed to bother him were the smells in the area near our hotel room.  Everything was new : paint, carpet, beds.  Those smells were slightly overpowering.  But there was no heavy chlorine smell in the park and no overly bright lights.  Every half hour or so, there was an alarm that went off at the wave pool.  But that was it. All of the places where I expected that he would have a hard time, he did great.  All of the kids did great.  I was amazed.

We had a late check out of 2pm, so we stayed at the water park area until about 1:30.  We changed quickly in the hotel room and checked out.

Our water park passes were good though until the park closed that night.  There are lockers and changing rooms if we wanted to stay.  We chose to check out the other parts of the Howlin’ Timbers Play Park instead.

The ropes course is included with the water park passes.  So we had to try that.  And by”we” I mean everyone else in my family that is not me:

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getting strapped in

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Who is this crazy kid up so high?

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The lower ropes course was more their speed.

I was super impressed by the staff at Great Wolf and how attentive they were.  When the line to go on the ropes course got long, two other staff members appeared out of nowhere to assist on the course.  The staff all seemed to be local as well, as indicated by their town on their name tags.  I love the boost to the local Worcester County economy with that.

After the kids were off the ropes course, they played two games of bowling each.  No rental shoes needed.  And bumpers for the kids so no gutter balls.  This was a big hit with my guys.  It was also not noisy at all like many bowling alleys.  Again that made it so much easier to stay and play.

 

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Strike!

There were several things that we didn’t get too because we just ran out of time and energy.  There’s a whole MagiQuest game and movie theater that we didn’t even attempt.  It looked like fun but we had to save something for next time.  There’s also a kid spa and a story time that we skipped.  My kids aren’t fans of people in costumes so we stayed away from those areas.

Because I am always looking through my special needs parenting glasses, there are a few things that stood out to me at the park.  First – it was very quiet.  Many areas were carpeted so there wasn’t a lot of noise bouncing off the floor and walls.  The lighting was also natural light in many places in the park.  The arcade was calm and quieter than most arcades I’ve been in.  There was also a variety of food choices on the menus for the restaurants so there seemed to be something for everyone.  We did bring a lot of our own food but every room has a decent sized fridge and microwave so that wasn’t an issue at all.

Now we were there for the grand opening and it wasn’t very crowded.  We’ll have to go back to see if all these things stay the same when the resort is full.

I also liked that everything was on their website so we could preview it ahead of time, even the room layouts. That was huge in making sure my kids knew everything before we left.  We aren’t the “surprise!  Here we are!” kind of family.

There are definitely some things to know before you go.  You can’t purchase day passes only to the resort so you have to stay overnight. The water park passes are included as part of the hotel room, as is the ropes course.  While there, I was thinking how wonderful it would be to have our kids’ home therapists with us to help with turn taking, peer interactions, and meals, yet I didn’t actually want to pay for a hotel room for them. Considering the number of special needs families who may need to bring a babysitter/therapist/teacher along to help out, I did ask if you can purchase additional day passes though for people joining your party who are not staying over.  The answer was yes to that. Definitely ask when you make the reservation to see how many day passes you are allowed to have.

Your room key is a chip in the water park bracelet so there’s no possibility of losing your keys (or having them stolen) while swimming and you can choose whose bracelets are activated as keys.  We did have to warn the kids that they would need to wear the bracelets all the time as this is usually a sensory issues for all of my kids.

When we got home. the kids were asking when we were going to go again.

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This mini-vacation came exactly at the right time for our family.  We needed a stress free time away from the house where we could just relax and be ourselves.

We got that at Great Wolf Lodge.

I know we will be back very soon.

Vacation
All I ever wanted
Vacation
Had to get away…” – Vacation by The Go-Gos

 

 

 

 

"The things that make me different are the things that make me ME!" - Piglet quote on the wall of our sensory gym

“The things that make me different are the things that make me ME!” – Piglet quote on the wall of our sensory gym

Last week I got an email from one of Howie’s teachers.  She explained that they had been working on a math assessment test about money and coins.  The directions were to count the money and show your work.  The teacher said that Howie had refused to show his work. His explanation was that he didn’t have to “because I have autism.”

She wrote that they had worked through the refusal by reminding him that this was for his third grade teachers and while she knew he could do it in his head, he needed to show his new teachers that he understood the work.

Now Howie has never been a big fan of reviewing concepts.  “I already know how to do this!” is a frequent refrain when doing assessments or review work.  But this was a new wrinkle.  He had never refused to do work because of autism before.

I wrote back and said I was kind of stunned by all of this since we’ve never said anything like that to him or around him before.  We’ve always talked about autism – and specifically his autism – in a positive light.  Talking about the gifts it brings him.  Lately we had been discussing how there are times when different brains have a harder time with some activities, and that’s why sometimes he needed to leave the room to take a test, or use his headphones or have a sensory break.  But we’ve never said he couldn’t do…anything.

I expressed my surprise at his statement and said I would talk with him about it.

Later that afternoon, Howie and I were sitting across from each other on the floor of our living room.  His iPad was on his lap and he was creating his newest world on his Blocksworld app.

“Hey bud'” I said. ” I heard that you had some trouble working on your math assessment today?”

“Yeah.  But the fruit snacks helped me get through it.”

“What was hard?”

“I had to write it all out but I knew the answer.”

“Your teacher said you told her that you couldn’t do the test because you had autism?”

” I said I didn’t have to do the work because I had autism,” he said. He didn’t look up at all.

“Well, autism isn’t an excuse you know,” I said. ” You can do hard things. But you still need to do the work.”

“I didn’t say I couldn’t,” he said.  “I said I didn’t have to.  I didn’t have to show my work. I could see it and do it in my head.”

I sat there and just looked at him.  His eyes never left the iPad, fingers moving and swiping and tapping as he built a cityscape for his Blocksworld cars to drive through.

Not an excuse.

A reason.

Not a negative.  A positive.

Not can’t do. Don’t have to to understand.

Part of his gift.  He could see it in his head. So why do the extra work?

He wasn’t trying to get out of doing the test itself.  Just the showing his work.  And not because he didn’t want to.

Because I didn’t have to.

He was actually advocating for himself.

“I understand now,” I said.  “But you know there will be times when you have to show your work, even when you can do it in your head.  It’s important for other people to see what you see.”

“I know,” he said. ” And the fruit snacks were really good.”

***********

In our world, autism isn’t and won’t be an excuse.  We’re never going to teach him he can’t do something because of how his brain is wired.

But it can be a reason why things are hard. Or, in this case, easy.

Maybe it’s semantics.

This is why we felt it was important that Howie knows and understands his diagnosis. So he could say, “I see this differently because my brain is wired differently.”

A few weeks ago, M. Kelter of Invisible Strings posted this on his Facebook page:

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Without the words to say “because of my autism”, how might this interaction have gone? Alternative scenarios might have involved a long, drawn out stand off, viewed as noncompliance, leaving everyone exhausted, frustrated and miserable.

Leaving my kid feeling like a bad kid.  A failure.  Different without explanation as to how or why. Removed for long periods of time from his general education classroom as things escalated, keeping him away from his peers.

He knows he leaves to take tests in a quiet space so he doesn’t get distracted.  We are working on helping him understand that his aide is there as a “coach” and “interpreter” when he needs help.

But he also needs to know that we will listen to what he is really saying and doing and go beyond the specific words that he is using  in order to make sure that we understand their meaning.  Because here he was, in his way, appropriately advocating for himself.

It’s our job to make sure we hear him when he does.

"The things that make me different are the things that make me ME!"

“The things that make me different are the things that make me ME!”

 

Although you see the world different than me
Sometimes I can touch upon the wonders that you see
All the new colors and pictures you’ve designed
Oh yes, sweet darling
So glad you are a child of mine.

Child of mine, child of mine
Oh yes, sweet darling
So glad you are a child of mine.” – Child of Mine by Carole King

On Thursday, I may have accidentally peeked at my Mother’s Day present from Howie.

Not on purpose.  I was going through his backpack for his homework and found this:

the cover

the cover

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(he calls me Momabom)

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and cue the tears…

After I wiped the tears away, I sent his teacher an email:

Hi!

I just took a peek at the People magazine Mother’s Day project and I’m in tears. I’m curious – How much help did he need with that?

That’s a special gift. Thank you.

I don’t know why I needed to know how much help he needed.  Maybe because I knew how hard these past few weeks have been.  How putting pen to paper has been so challenging. I knew these were his words and our stories. But I just…I just had to ask.

She wrote back:

It was a process and very much a team effort, but I have to tell you…never have I seen him quite as motivated to write as when I mentioned it was for Mom-to thank her for all of the special things she does.  :)  You can definitely see the bond the two of you have.  Glad you enjoyed it, but you shouldn’t have PEEKED! ;)

And I started to cry again.

Happy tears.

I’ll admit that in the past I might have been a little discouraged that he needed help with this.  In the beginning, complete independence was the goal in my head.  No supports.  All on his own.

But on this special needs journey that I’ve been on, I’ve realized that this – this People Magazine Mother of the Year story – this is the Holy Grail.

Everything we – and he – has worked so hard on is wrapped up in this amazing Mother’s Day gift.

Teachers who will wait and work with him in his way with what he needs.  Knowing that he can do the work but he needs the supports to succeed.

Presuming competence all the way.

His smile when he gave it to me this morning said it all.

“I love you, Momabom”, he told me this morning.

“I love you too, little man.”

I love all three of these incredible little men. Happy Mother’s Day to me.

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If you love somebody
Better tell them while they’re here ’cause
They just may run away from you

You’ll never know quite when, well
Then again it just depends on
How long of time is left for you

I’ve had the highest mountains
I’ve had the deepest rivers
You can have it all but life keeps moving

I take it in but don’t look down

‘Cause I’m on top of the world, ‘ay
I’m on top of the world, ‘ay
Waiting on this for a while now
Paying my dues to the dirt
I’ve been waiting to smile, ‘ay
Been holding it in for a while, ‘ay
Take you with me if I can
Been dreaming of this since a child
I’m on top of the world.” – On Top Of The World by Imagine Dragons

This morning I was cleaning out my dresser drawers.  We were donating it to the thrift shop up the street and everything needed to be out of it.

I pulled out all the clothes from the bottom drawers and moved my way to the small top jewelry drawer.  I’m embarrassed to say how thick the layer of dust was on top.

Hoarders would have a field day with the content of that drawer.

But there among the old papers, Mother’s Day cards, hair clips and broken watches and Lego pieces…

There was this:

21st Birthday

21st Birthday

 

When I turned twenty-one, my parents gave me 21 presents.  Some were small and silly, some were amazing.  This was one of them.  Inside was a letter from my dad to me.  One that I forgot existed.

I opened up the letter, reading it for the first time in I have no idea how many years.

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January 18, 1993

Dear Alysia,

Perhaps it is impossible for any person who is not a parent to understand what it means to have a child.  Your birth twenty-one years ago was the greatest moment of my life.  Holding you in my arms, looking into your eyes, changed the entire world for me.  It changed my past and my future because it gave my life new meaning.  I was amazing that the emotional import of becoming a parent for the first time was so overwhelming.  If you are lucky enough to have a child someday you will be surprised at how different the intensity and the quality of the rush of love is that accompanies your first child’s birth.

No matter what you do in life you have already given me more pleasure than I could have ever hoped for.  You know that I will always stick with you through good time and bad forever.

Even though it’s probably impossible for a daughter and a father to ever forget their “roles” in each others lives I hope we can continue to become regular friends who can learn from each other, disagree with each other, and still know like all true friends that we can depend on each other.  Unfortunately I never had the chance to be an adult friend to my father.  If I had I’m sure the relationship would have had its stormy moments as I was an independent minded young man who perceived most advice as nagging. But in the end it would have worked out because your grandfather’s values were just like mine.  Loved was the underpinning of our relationship.  I wish he could have met you and known you because he would have seen that his life and love had been passed to a great young woman.

I admire you for all you have done in your 21 years.  I look forward to you seeking a happy and fulfilling life.  Don’t let life’s hard knocks get you down.  All children carry some of their parents inside their heads and hearts forever both the good and bad. I hope you will always cherish the special moments you and I have had and will have for many years to come.  I certainly have cherished them all.

Welcome to the adult world – happy birthday.

I’ll love you always,

Dad

Sometimes being a hoarder has its perks.

Now if you’ll excuse me, I think I have some letters to write to my own children.  For them to hide away somewhere and pull them out when they need it most.

Oh and I love you always too Dad.  And I miss you every day. Thank you for being inside my head and my heart.

Love, Alysia

It well may be
That we will never meet again
In this lifetime.
So, let me say before we part:
So much of me
Is made of what I learned from you.
You’ll be with me
Like a handprint on my heart.
And now whatever way our stories end
I know you’ll have rewritten mine
By being my friend.

Like a ship blown from its mooring
By a wind off the sea.
Like a seed dropped by a sky bird
In a distant wood.
Who can say if I’ve been changed for the better
But because I knew you…
Because I knew you…
I have been changed for good.” – For Good from the play Wicked

 

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