Tag Archives: life lessons

Autism, Life, Memories, Parenting, Special Needs, Writing

..On the other side..

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I planned this weekend to be magical and full of memories ..

I reserved a campsite on the  northern shores of Lake Michigan.. planning weeks in advance. We were going to be able to watch the sun set over the great lake while sitting at our campfire… enjoying all of our favorite campfire foods… and just relax.

HA..

..well?

Let’s just say that it didn’t exactly go according to plan. 

When we arrived at our campground… so excited… the first thing we did?

..was drive through a massive cloud of Midge flies….

Midge flies…. 

I am a native of Michigan. I have been camping all of my life.. in all 4 seasons. And I had never experienced Midge flies. 

Well at least not… “clouds” of Midge flies. You see? The smoke puffs we thought we had seen on our drive in … along the beautiful Lake Michigan shore line? 

That wasn’t smoke. It was millions of tiny.. “Mosquito look alike” flies. 

As soon as we passed through the third cloud of bugs, we saw that the campground host had posted signs that the Midges were harmless and would only last 2 weeks.

BUT… that didn’t help us at all. Our reservations were for this weekend. 

They also offered to honor our reservations at a campground further inland… safe from the Midges. 

But further inland meant AWAY from the sounds of crashing waves… away from sunsets on the great lake.. 

Nope… inland was not in the “magical” plans.

The signs did say harmless... sooo….

We set up camp. 

My dad always told me, “What doesn’t kill us makes us stronger”.. and then he would laugh and say.. “But you’d be surprised what you can live through.”

We did NOT get a single bite from a Midge… but they love to fly into your eyes, nose, and mouth. They rested on anything solid.. in a cloud type coating. They landed in our drinks if they didn’t have covers, our food while we tried to cook.. and.. we finally resorted to covering our mouths so we could breathe (and talk). 

But when the Ranger came by to make sure we had seen the offer to move inland.. we were stubborn.

We stayed. 

We tried all the usual tricks.. citronella candles… all natural bug repellent… deep woods bug repellent … deep woods bug fogger… manually killing them by the hundreds… nothing helped. They filled our camper.. made a layer of little bug armies covering the tents and tables. 

They weren’t hurting us… but they were making us crazy. 

The first night was cloudy… hiding any magical sunsets.. and the Midges drove us inside … so NO magical campfire treats. We even ended up driving to town to eat in an environment free of things flying into our mouths. 

But our family was NOT without humor. “Because the Midges have decreed it…” or.. “the Midge cloud has disrupted the satellite connection..” … yes.. our family was still making memories through laughter during this vacation disaster. 

The second day was clear… so we trekked up and over the very  small hill that separated our campsite full of midges from the beautiful beach on the other side. 

And on the other side? 

..yup… 

….more midges.

In fact… climbing over that small hill..? We encountered more Midges than ever. Thick clouds of them that we charged through with our mouths covered and our eyes closed. We learned not to bump the pine trees… their nesting grounds.. 

…and then when we reached the beautiful sandy beach?

.. yup.. 

..more midges…

But… we could also see the beautiful glow of the sun going down over the great lake. We still had to keep the Midges from landing on us. But it was easier to laugh as we searched for skipping rocks… easier to ignore the flies when we were taking beautiful pictures. 

It was easier to enjoy ourselves.. despite the Midge flies… when we were being creative..

…and enjoying life….

I think that sometimes it is so easy to pack it in.. or to hide in our camper.. when life gives us Midge flies. And we were ALL tempted to do that this weekend. 

But if we had stayed safe inside the camper… or moved 2 miles away.. to make it easier.. 

..OR had we turned back when the Midge flies made it absolutely miserable to breathe… 

I would never have gotten to take these beautiful photos of my family… We wouldn’t have skipped rocks… and .. we wouldn’t have made some funny  but beautiful memories.. 

… and we will laugh about our Vacation with the Midges for years. 

This month was hard for our family.

Very hard…

The journey with Autism is neither clear nor is it easy. 

Parenting is hardly ever clear or easy..

But with Autism added in? 

… sometimes? 

Sometimes…  I wish I could hide my son away from the world.  Away from the disappointments.. away from the failed attempts that we all encounter.. away from the people who doubt that he will succeed… 

But if I kept my son… (or my daughter for that matter) … hidden away in the camper..?

Away from the flies of annoyance and frustration… and disappointment? Hidden from failed attempts at success?

If my family had stayed home this weekend to hide away from the flies of Autism, instead of going on the worst vacation spot in Michigan?

Then.. I would have 500 less pictures on my phone right now. And we wouldn’t have made all of these beautiful memories. 

So.. my family is gearing up to go over this next hill in the journey of Autism. We will travel it with family by our side.. and laughter in our hearts.

Because you notice the Midges less that way. 

 

 

Life, Parenting, self love, Special Needs, Writing

…balance..

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I once heard that regrets taste the worst when you drink them with coffee in the morning..

I always thought it referred to … I don’t know… someone else.

But lately..?

Lately, I have really struggled with taking time to write. It seems so selfish to take time out to download my brain when my to-do list is piling up.

.. but I feel like my “to-do” list just goes in circles..

… and I feel like I’m half checked out..

…overwhelmed by all the things I need to do.. that I SHOULD be doing…

… distracted by my thoughts all piling up in my head.

And then I’m further behind than when I started… so it would be even more selfish to take time NOW…

((Insert Deep Sigh Here))

This morning..?

This morning as I started to do my more chores… ??

The power went out..

Unexpectedly…

.. the power company was “assessing for causes”…

…meanwhile…

I could not do any of the things on my to do list…

Soo.. after I got my son (who is distressed by power outages.. and who does not like the phrase “estimated” or “unknown”..) distracted with mowing the lawn…

I took my coffee outside .. with my notebook..

… and no excuses…

… no guilt..

…and I wrote..

…and for the first time in a long time… I had no regrets with my coffee…

Recently, I read that being so Selfless that you don’t take care of your Self.. is one of the most Selfish things you can do..

The first time I read that I laughed.

After all, being selfless is exhausting .. and well…? … you give up any idea of pleasing yourself..

In its very nature, the idea of being “so Selfless that it’s Selfish” doesn’t make sense.

But this morning?

As I drank my coffee, and found myself at ease ?

I realize that giving up so much of yourself.. selflessly… that you have nothing left to share?

You start to feel your spark disappear.. your focus… your enthusiasm…

… it all disappears until there is nothing left to share…

THAT is selfish …

…and I dislike being selfish..

So my goal today is to find balance..

.. a balance between living a useful life… living a life that makes a difference to the world…

.. and living a life that is worth living…

A life without regrets.

How will you drink your coffee?

Life, Parenting, Writing

…still warm…

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Coffee in hand, I headed to my couch this morning.

The sun shone through the window and illuminated my favorite spot.

The pillow was still crinkled. The blanket was still rumpled.

In fact, it looked as if someone just got up from this spot.

It looked like it was still warm.

Instead of sitting on the couch? I sank onto the coffee table.

Too often in our lives… we take fore granted the people that sit on our couches. We expect to see our loved ones sitting in their favorite places.. forever..

.. because they are always there…

Earlier this week? A man in our community died suddenly.

One minute? He was where he always was. Running his boys to practices, helping out in the community where he was needed, calling his wife…

.. he was where he always was..

.. and now?

Now there is an empty couch cushion that is still crumpled. Like he just got up for a moment and walked from the room..

.. like he would be right back.

His spot in this world still warm.

For awhile that spot is going to feel so empty for his kids.. for his wife…

And not just the spot on the couch.

There will be an empty place in the bleachers.. an empty place in the church pew.. and empty place in the car for road trips.

.. so many empty spaces…

But the truth is?

This Dad’s presence was so strong in his family..

.. so strong in his community…

He left his presence so strong.. that those places are still warm.

And they will stay warm.

His time here was shorter than he would have wished. But he made good use of that time.

Once the pain and shock has worn off?

Once the grief starts to lessen .. a little?

We realize those empty places .. are not really empty at all. The spirit of our loved ones stay with us and occupy those seats still.

And if we keep the memories of their spirit alive?

Then the spaces will still be warm..

Autism, Life, Memories, Parenting, Special Needs, Writing

.. decades of work..

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My son turned 20 today.

My baby boy.

My little man with autism and a side of mood disorder…

..is 2 decades old.

When I look at him it seems like yesterday that I started researching digestive disorders while my family .. slept.

It seems like just yesterday that I read every book on parenting kids with Autism.. and every book on Childhood Bipolar.. Reading 4 inch books on the “science of the chemistry of the mind”.. while my friends read a funny romance.

It seems like yesterday when I questioned whether I was doing a good enough job … with tears running down my face.

And I can remember it clearly when Simon leaned his head on my shoulder and said “With God, all things are possible.”

How is it possible that this young man has come so far?

No longer a boy that is silent.

No longer a boy that hides his face in my shoulder.

No longer a boy who watches from the doorway.

Here stands a boy that walks confidently through doors. A boy that sings in front of a whole auditorium of people.

Here stands a boy who easily orders his own food at a restaurant.

Here is a boy .. who amazes me in every way.

Two decades of work have flown by…

… I can’t wait to see where the next 2 decades take him …

Life, Parenting, self love, Special Needs, Writing

Self …

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Last night.. a mom hurried onto the stage. It was late and she looked exhausted. But she took off her jacket and rolled up her sleeves and asked what she could do to help.

In that moment, I had a moment of clarity.

This mom was tired. She had just come from a commitment that involved small children .. and it was 8 pm. She really needed to go home and rest.

But yet?

She was ready to work to help the kids’ theatre stay on schedule …

Who was I to tell her to go home and take care of herself?

How could I tell her that when I can’t say ”no” to anything.

I can’t say “no”…

Anyone who knows me.. Knows that..

And when I get tired? Really, really tired?

.. my friends? They try to coach me ((once again)) on how to say “no”..

They tell me to spend some time on myself. To selfishly take care of myself for a few moment..

But that is not how I work.. I am the happiest when I am helping others.. when I am working towards making the world a better place for others..

..there are definitely days that are more full and more tired than others.. but I manage..

Even society tells us that good moms .. and especially moms with special needs kids.. need to be involved.. really involved..

AND .. every moment counts because they grow up so fast..

So I skip a calm moment for myself this time.. so that I can do one more task for someone else.

I skip all those moments for myself.. until I’m exhausted and my head is full of noises.

Julie noises..

.. wanting to write.. wanting to paint.. wanting to read.. desires to explore the world around me.. to create .. to write some more…

.. so many voices…

But there are things to be done.. responsible things..

Committees that ask for help.. chores that need to be done.. messes …

So I put my “noises” on the back burner.. and square my shoulders and head off to a meeting..

For holidays this year, I received 2 willow figurines as gifts.. I love Willow figurines and these both were beautiful as usual.

And they were to represent me..

The first .. Simple Joys.. represents my love to give things to others.. gifts of time, gifts of work, gifts of love.. all of the best of me..

This Simple Joy figurine? .. it very much represents the essence of me..

But the second?

The second was a gift from my daughter.. it is titled Shine..

Shine..

.. my daughter .. encouraging me to reach for my dreams.. to take time for myself..

..my daughter… the one I encouraged to always shine for herself.. now turning my words back to me..

.. giving me permission to think about my own needs…

But it feels so .. selfish.. to think of yourself ..

It seems selfish to take time away from making the world a better place.. take time away from helping others…

… just to write my thoughts down on paper…

Balance ..

Looking at these 2 figurines.. I realize I need balance…

Looking at the tired mom standing before me last night?

I realize we all need to find balance..

Balances between being selfless and being selfish..

… a balance somewhere between simple joys and shining…

.. the balance between the selfless and the selfish is where we will find our true self…

.. and then all that remains?

It’s to give ourselves permission to accept it.

Life, Parenting, Special Needs, Writing

Heroes

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Some people look at my son .. and see a disability.

They look at his face and his mannerisms.. and they see Autism Spectrum disorder!

When I look at my son?

I see a strong boy. I see love, compassion and a love for our world.

When I look at my son? I see my hero.

Here is a human being that has been dealing with extreme medical issues since he was 6 weeks old.

A boy that had to have casts to hold soft bones in place. Screws to hold soft joints in place. Medicine to allow stiff joints to move.

Here is a child who learned to read labels to avoid 30 of his favorite foods.. because he wanted to walk without pain.

Here is a young adult who is enduring countless treatments to heal a painful skin condition.

Here is a boy who has always been in pain.

And yet?

…yet he greets people with a smile. He never mentions his pain. He will walk on painful feet to cook for his sick mom. He sees beauty and art all around him…

.. and he sees his future as bright and exciting…

He is in constant pain…

And he sees his future as bright and exciting…

When I look at my son?

I see my hero!

And when I grow up? I hope to be just like him.

Life, Memories, Writing

Beautiful encounters ..

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Yesterday I went to my great aunt Shirley’s funeral.. and today we are off to celebrate the life of my husband’s cousin’s husband’s father.

I know.. I know.. it sounds like the plot line of a sitcom … but as an author?

I don’t think I could make up souls as beautiful as these.

I bet you all believe me that my great aunt touched my life..

.. but I also bet that your eyes keep drifting back to the line my husband’s cousin’s husband’s father in doubt..

Well I’ll admit that I didn’t know a lot about this man’s past.. and he was very likely not perfect. None of us are.

So if I didn’t know him well … why do I want to take time to celebrate Mick’s life?

When I saw this man at a family function? There were always a lot of people around. Family and friends gathered around having a good time. People he knew really well. Yet he walked around and had great conversations with everyone there..

He even made time for his son’s wife’s cousin’s wife..

.. even though he wouldn’t have needed to..

He always asked about how my kids were doing and how I was doing.. listening closely to what I answered. He always listened so carefully. He had this way of making you feel like you were the most important person in the room to him at that moment.

I spoke to Mick a couple weeks ago .. as we celebrated an auntie’s life. He told me about some of his medical conditions and told me about the miraculous way he pulled through them.

Not bragging..

Mick explained how Blessed he was for every moment he had on this Earth with his family .. and that he would only admit defeat when God told him he was done. Not anyone else.

He used that story to encourage me to keep reaching for the stars for my son. To not listen to anyone who said I should accept limitations.. until I saw the limits myself.

He always ended our conversations with a hug. He always told me to let him know if I needed anything because that was what family was for..

Family..

His son’s wife’s cousin’s wife…

Family.

Watching Mick walk away that last time reminds me of a beautiful butterfly I saw this summer. It landed next to me on my truck. And sat there forever allowing me to enjoy its colors and take pictures of it. The miracle of something so beautiful is so much better than anything found in fiction.

And then?

Then the butterfly took flight .. off to brighten someone else’s day.

Leaving me to feel so Blessed at that Beautiful encounter.

I am so thankful for every single beautiful encounter I had with my husband’s cousin’s husband’s dad.

.. and that is why I am going to celebrate his life today.

Life, Memories, Writing

.. the best gift..

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Last night we sat in the twinkling lights of the Christmas tree during the last moments of New Year’s Day. The last moments of the holiday week.

Knowing that I should be a responsible human this week and take down my Christmas decorations, I sat back and enjoyed the beautiful glow while I still could.

Looking off to my left, I saw the cat peacefully slumped on his perch.. also staring at the tree. The writer part of my brain instantly started a narrative… A story of how this cat was sad to see the holiday season over. How all the work to make the holiday special.. made the next few weeks seem empty and hollow. Depressed at having to return to his work schedule..

Ha.. this particular cat was only exhausted because he had used all his ninja skills to evade the preschool age kids who just wanted to “love” on him.

… and his only longing glances at the tree? Involved wondering if he would be left alone with the tree long enough to make it to the top before I called his name.

I think everyone deals with holiday “hangover” emotions as their holiday week comes to an end. Whether it is exhaustion because they worked too hard .. worked at keeping up with the messes.. or keeping up with the activities.. or exhaustion from socializing. Or frustration because the holidays weren’t as magical or as smooth as they imagined.

Sometimes that emotion is reigning in the peace gained on vacation.. steeling yourself for returning to work. Or being lost with no holidays to look forward to …

HA!

… and I know there are a lot of people who are looking forward to the peace that a “break” in the holidays with give them. Looking forward to the stability of getting back to a normal schedule.

As I watch Miracle Max give a yawn before stalking off to the kitchen to see what holiday treats were left on the counter… I think about what emotions I am recovering from.

Over the seasons in my life, I have been the over achiever mom (where we did EVERY holiday tradition we could think of).. the crafting mom (where we made so many crafts and cookies)… the exhausted mom (where we did .. almost nothing).. the sick mom (where I wanted to be more but we were stuck in quarantine)… the responsible mom (where I was trying to see if schedules would help keep our “special needs” in control).. the budget mom (yeah.. well..)…

At the close of each of those seasons? I sat just like I am now.. looking at the tree. First running through the memories of the last weeks. Then carefully thinking about what worked well and what didn’t. Making mental notes on what to take with me into next season.

The 2018 season of life was a good mix. We prepared and then rested.

We worked hard to clean up for family events.. and then relaxed into enjoying them.

We crafted gluten free treats and homemade gifts.. then we sat by to watch others enjoy them.

We worked and planned and decorated.. then played games and watched Christmas movies together..

We had big family gatherings where we had loud noisy fun…  then enjoyed quiet discussions over coffee..

Holidays are more than the magic of a full stocking on Christmas morning .. more than lights and decorations.. and even more than the extra calories in the Christmas treats..

.. and I have learned to celebrate family all year long.. so Christmas isn’t the only time to do that..

What I will take with me into this next season?

Balance…

The balance that we learn during the holidays? I want that balance for all year long.

I love to celebrate family… I love to find joy in each season.. I love to find small things to look forward to… to share gifts of the heart.. to follow passion and dreams..

Those gifts I have already learned..

.. but I don’t always remember to relax into enjoying … often forgetting to enjoy the lights and the quiet of each season .. or remembering to rest..

So the gift of this season for me is finding Balance.

What gift did you unwrap this Christmas?

Life, Memories, Writing

Good bye 2018..

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This year..?

This year had its fair share of sorrows.

Well .. more than its fair share really..

Hard decisions… overly full schedules.. sick family members… missing family members … hospital stays… guardianship paperwork… disappointments… extra expenses… broken appliances…

…family members who won’t move into 2019 with us…

… and I didn’t quite finish writing the sequel in my book series like I promised myself.

To many people my year would look like a disaster.

But there were also moments that shined brightly. Laughing with my kids… watching my daughter shine on stage … watching my son gain confidence.. dancing in the waves at sunset… directing 2 great casts to showcase their talents.. a fabulous family vacation or 2… finished projects.. watching my nieces and nephews grow into amazing souls..

Our moments are NOT confined to the years that they occurred in..

I will still miss loved ones tomorrow.. that doesn’t stop today.. with the end of 2018..

We will still be figuring out my son’s future plans tomorrow .. that won’t be confined to this year..

My unfinished book.. will still be waiting to be finished in 2019…

Soo?

…if our moments aren’t confined to the year.. why should the year be defined by them?

The moments in 2018 weren’t completely bad. I got to have one last sweet hug from our Auntie.. I sat and talked to a wonderful man for a long time.. not knowing it would be the last time I talked to him. But it was beautiful.

I could go on and on..

My 2018 won’t be defined by the good and the bad … the easy and the hard… the wonderful people who lifted me up .. the people I helped in return.. the finished and the unfinished..

The end of 2018.

The end of the year is just a moment in time for us to pause and take stock of our lives…

A moment to decide if you like where you are headed.. a moment to decide if you need to adjust your direction before we take that next step..

Then we step into 2019.. and just keep moving forward..

Life, Memories, Parenting, Writing

.. finished plans

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“.. and it is finished!”

20 years after I started.. I put the last photo in a frame and closed every painful prong..

Flipping it over, I let the memories flood over me as I studied each picture in my daughter’s collage..

Ok ..

It wasn’t really finished. I opened up those painful prongs one more time and straightened a couple pictures .. and… changed places of two..

.. but then it was finished..

When we started this project 20 years ago.. the plan was simple!

Choose 1 picture to represent every year of her life..

Add in her newborn picture and her graduation photo..

Waa Laa… Easy peasy plan… and Go!

At the time I made that plan? I’d only been a parent for a year.. with my second on the way.

BWAHAHAHA…

I had no idea what life had in store for me… how big my adventures with my kids would be.. NO idea how big my kids’ personalities would be..

I had NO idea how many pictures we would take each year..

After 5 years? … after only 5 years, the task of only picking 1 picture was too daunting.. and I did not chose that year.

The rule of no one else in the photos was quickly set aside.. and the rule against school photos.. gone..

The plan was to display this collage at my daughter’s graduation.. but it wasn’t finished ..

So the new plan was to finish it before the open house. I pulled 200 pictures to fill 20 slots..

Sooooo….?

So.. the new plan was to fill board after board with pictures that represented my daughter’s life… for the open house… then I’d finish the collage later…

..That was 2 years ago…

This morning I was supposed to be cleaning.. because we have a houseful of guests coming to celebrate the New Year with us!

..so naturally ..

I pulled that collage down and started pulling pictures to put in each year’s slot.

I started pulling one picture for each missing year.. but they didn’t fit the sized pictures I needed… they weren’t following the rules.. and it still wasn’t working the way I planned..

The more I sorted?

.. the more I realized…

Life doesn’t follow rules.. and it doesn’t take plans into consideration…

So instead.. ?

I started pulling the pictures that showed the light in her eyes .. the ones that emphasized her beautiful soul… and sense of humor..

.. and before I knew it… ?

It was finished..

Parenting is like that…

Parenting doesn’t follow rules.. and it doesn’t take plans into consideration…

We started out with ideas.. a road map.. an “easy peasy” plan for success..

.. and then we went off-roading.. so far off road that our parenting job could not be more different from what we thought..

But .. you know what??

I think it’s better than what we planned..

This life? …it is so beautiful…

I have a collage full of pictures to prove it..