Tag Archives: Autism

Still laughing

When I was a teen, my sister and I would pick a recipe from one of my mom’s old recipe books.. and we would try to make it..

…substituting ingredients for ones we didn’t have (or didn’t know what they were)…

Who had even heard of lard or “oleo” at 12?

“Baking soda is the same as baking powder.. right?”

Sometimes they turned out…

…sometimes our brothers would laugh as they ate a chocolate lava cake.. that just looked like lava.

But they usually tasted good.

I feel like my childhood was a training ground for cooking gluten free, dairy free, egg free, and less sugar… and we are still laughing 😂

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Thoughtful Thursday …

I was talking with a friend the other day and he got me thinking.

We were at a celebration for my parents’ 50th anniversary..

… and he was saying how he made a hard decision for himself as a teen.. and as a result?

… met some really great people.

One of those “people” being my little brother.

… and in a domino effect ?

There he was ((years later)) celebrating along side our family.

A blessing to all of us … because he made a hard decision to make HIS life better.

While I finished cleaning up after the party..

…a party to celebrate two people being married for 50 years.

50 years of marriage.. and decisions… and celebrating… and comforting each other… and compromise…

I could not help but think about how many of those decisions caused the domino effect that led to how we see our family now?

.. and how many times do we NOT make decisions because they are too hard?

How many times did someone not go out on a limb because it was a little too scary?

How would those decisions have changed what we see?

How many decisions did I fail to make…? … that changed how my life looks?

Parenting involves so many decisions.. but parenting kiddos with special needs (medical/educational/ social)??

Those decisions seem so much more …. Weighted.

Knowing that someone else’s life will be affected by the ripples of that decision?

I remember making decisions through tears…

… and I remember NOT making decisions.. with those same tears..

Decisions can be hard…

I remember when we finally decided that understanding history and science weren’t as important as feeling independent…

Making decisions FOR our family …

… and in the process?

We have met some really great people along the way.

But the hardest decisions for me to make are the ones for me…

It’s easy to scrimp and save to spend money on a loved one…

… but for me to ask someone to scrimp and save for me ?

((Gulp))

A few years ago… I started booking events to promote my books.

It was hard..

It costs money to book a spot at an art fair .. or author expo …

.. and it costs time away from family where you have to get someone to cover your responsibilities…

It costs … and it was really hard for me.

But I met a really great group of fellow authors… and fellow literary professionals… that have encouraged me to keep going…

Exactly where I needed to be … when I needed to be there…

What about you?

What are you thoughtful about today?

Are you weighing decisions and their effects?

Collecting leaves…

This time of year has always been a reflective time for me.

With all the leaves falling and changing colors? I stop to think about the year so far.

Some of the leaves falling are bright colored and fascinating. Others fall already dark and dull.

Some of leaves fall right next to the roots of the tree .. and some travel quite a ways.

Sometimes those leaves can be pretty messy.. and not fun to clean up. But I cannot help but be thankful for the trees anyway.

The bright colored leaves are fun to collect. I’ve often thought about making a collection of them. But then I always toss them back into the wind.

In many way, the memories from this year are like those leaves. Some of them shine with bright colors and bring a smile to my face.

Some of them?

Some are darker moments.. and take a lot more time to process .. They are still part of my year but not the memories I want to dwell on.

But today?

Today, as I watched a brightly shining leaf fall on a dried up dull one…?

I wondered… would that leaf look so bright…?

… if it hadn’t just fallen after the darker one?

As I picked up the bright red leaf…

I remembered the moment I put my feet in the grass for the first time… after I had been too sick and too weak to do so for weeks.

That grass.. that ordinary grass… looked like the most amazing of God’s creations to me .. in that moment.

But would it have looked as amazing to me? If I hadn’t struggled to get down the stairs? If I hadn’t needed to carry an oxygen tank to get that far?

No. The grass would have looked ordinary to me.. without the dull colored leaf to compare it to.

This November, I am going to post my thankful posts. But they may look a little different. I’m going to be thankful 2021 style.

I am going to collect those brightest colored leaves before they blow away… and maybe a few dull colored ones while I am at it.

Best view in the house…

If I had to pick a house to be in this week.. it would NOT be the Covid floor of this hospital..

It IS a pleasant enough place.. but the pneumonia.. and the coughing.. and the struggling to breathe.. being so sick I can’t be home…

.. not to mention new iv’s at 1 am when the old one fails..

But the people here are amazing and patient… and brave. Suiting up everytime I need a toothbrush or a potty break.. or a water…

From Elise and Brooke and Melanie… to Chris, Matt, Erin, Erica, Tessa, Gabby, Crimison.. and so many names I didn’t catch… just the care they showed.

And everyone who walks into my room to poke and prod and encourage me to get better…? Looks out my window, “They gave you the best view in the house.”

And it’s true… as I lay here doing controlled breathing to expand my lungs.. I get to look at this idealic picture to calm my breathing…

And I got to thinking about all the blessings around me..

Covid is nothing I would wish on anyone. It’s horrible… but we knew what to expect from our doctors because they helped us to know what to do. What vitamins to take.. what precautions to take.

I got some great covid treatments .. that were NOT available a year ago. So for me? The year of quarantine life added a WHOLE year of research that made a difference in my life.

One of the nurses here said most everyone is fully vaccinated… that makes me feel calmer about accidentally infecting anyone. Something I never want to do.

So much love from family and friends .. and prayers from everywhere..

The packages of love delivered to my sick kids at home… from color books to gluten free Oreos … and fruit baskets … mean so much to a mama far from her kids…

So even if I’m eating the same 2 things off the menu… because they can’t cater to my crazy allergy diet… ?

The view from my window is still the best in the house…

Love you all…

Covid diaries day 6

All year I heard people say Covid is just a cold…

I’ve have Covid now for 6 days…


I’ve had 3 episodes of 105 temperature… where the shivering is so violent that I thought my bones would break.
I cough up so much solid red junk from my lungs that I can’t move afterwards.

On day 3, I went to the ER for X-rays and CT scans… where I was diagnosed with Covid pneumonia.. I was scheduled immediately for antibody infusions….

…and on day 4… when I couldn’t keep my oxygen above 88… my husband took me to the ER again and dropped me off at the door.

After countless labs and scans… The ER had to call 5 hospitals before they found a hospital an hour away that had ROOM to admit me…

I usually walk 2-4 miles a day in my life…


Today?

Today… I still can’t walk to the bathroom to pee withOUT shaking violently and having to have extra oxygen for the movement.
I almost hyperventilate when I change positions of any type. And then it takes me 20-30 mins to recover.

They found blood clotting factors in my blood work so I’m on blood thinners… and my glucose numbers are abnormally high. I don’t have problems with diabetes…

The headaches and fevers have subsided with the addition treatments… finally

…but my lungs will have a long road to recovery… and that depends on how tomorrow goes.. they say day 6 is pivotal for if you get better .. or worse.

But for me… I think about my kids at home… going through the same illness… doing breathing treatments and monitoring oxygen levels and heart rates… knowing that God has us all in His hands… in His plans…

I’m trusting in Him as I have always done.

But I am so glad that I spent the last year of my life protecting them and the people around me.. from this COVID… This “definitely NOT a cold” virus…

Stay safe out there. And God Bless

Clouds..

I am fascinated by sunrises and sunsets… as are a lot of people. I take pictures of them frequently.. trying to capture their beauty on my phone.

Trying…

I never quite succeed.

But over the years I have found that the most beautiful light displays.. are (usually) the ones with clouds.

I know .. I know..

Cloudy days usually represent .. rainy days.. and gloom.. and sadness…

..but…

Without clouds.. would we see our sunny days quite so clearly?

Without hard times and struggles.. would be see our Blessings as beautifully?

Or would be just learn to take them for granted..

Would sunrises with no clouds.. become so mundane … that we forget to wake early just to watch with wonder?

Hmmm..

A life without clouds.. without tears.. without strife or hard times sounds inviting…

But for me?

The morning after a 3 day migraine.. the morning after helping my son through a long ordeal… the morning after dealing with conflict…

I am filled with hope for the future.. conviction that I will make the most of every moment…

.. and the sunrise never looked so bright.

So I will take my sunrises with clouds.. or without…

… and I’ll keep trying to capture their beauty on my cell phone …

No…

Growing up, we had a dishwasher.

For two girls who did the dishes for a family of nine? It was so cool..

…except …

Except for when my mom took it away.

Now.. I don’t remember the Reason why she took it away… exactly.. because, as is typical for young kids…?

I only remember the punishment.

And our punishment was to hand-wash dishes… until she was satisfied that we knew how.

We asked my mom to change her mind and let us use the dishwasher again..

..and she said “no.”

I remember promising to make sure every dish was clean before it got put away..

.. she smiled and said she knew I would .. because I would be hand-washing those dishes.

… the answer was still “no.”

So we hand-washed those dishes.

.. every day…

.. for … forever…

Then one Saturday? My mom left to go grocery shopping.. and I remember filling the dishwasher full of dirty dishes… and standing there impatiently willing it to run faster…

.. then as soon as it was finished running its cycle?

I hand dried all the dishes.. washing any that didn’t come clean.. drying out the dishwasher thoroughly… and even fanning it with a towel to cool it off..

When I was done? I was exhausted…

NOW?

Now, I know it would have been easier to just hand wash those dishes.

Sometimes, I think I haven’t learned that lesson still… That young girl showed me an important message..

…and I still don’t listen to what she is telling me.

Every day I pray .. I pray for my kids… I pray for their health.. I pray for their life… I pray for the plans they want or the plans we think will be good for them…

Basically, I am asking for God to give me the thing that we want on Earth.. if it’s according to His will…

Having a son with special abilities?

Most of the times, these aren’t selfish things..

Healing from one of my son’s surgeries, answers to autism puzzles… successful days at school…

.. an easy day every once in awhile…

… and similar prayers for my daughter… health and happiness .. and a little success on stage..

…but sometimes?

Sometimes, God says “no.”

Most of the time I accept that .. but occasionally I ask again.. wondering if I promise to be extra good.. if that will change the Almighty’s mind…

When the answer is still “no?”

Then I just keep on going down the path set before me… no matter how hard it is…

But I admit…

.. sometimes on a Saturday morning? I try to make “my plans” work and do it my way. I load that “dishwasher” full of good intentions and hard work.. and wait impatiently to see if it will finish working… before God returns and sees that I ignored His answers…

… but at the end of the day?

It’s exhausting!

.. and it would have been easier to hand-wash those dishes.

Today, I was standing in Barnes & Nobles talking about my books .. and I realized that I incorporated that lesson in my storylines …

.. I show Emma praying for the easy way out… praying to make everyone happy even if it isn’t what she wants… praying for loved ones to come home without the answers they need…

… and then praying for the strength to handle all the extra work and stress she causes herself…

.. I can write it into the pages for Emma … but I still struggle to write that lesson into the pages of my life..

Instead of doing the things God has laid before me.. in a slow patient fashion.. I continue wanting to do my things .. my way…

I guess I can learn a lot from 9 year old me…

What about you? What do you do when the answer is “no?”

While we’re here..

When I was a kid, trick or treating had some crazy traditions.

One neighbor made caramel apples for us.. but we had to come in for a visit. (Yes.. our mom was with us..)

Another stop gave full candy bars… but we had to tell a joke.

And yet another stop we had to tell a Bible verse.

Now after years of Sunday school and Vacation Bible school.. I knew a lot of verses.. but one that I loved to recite?

“Jesus wept.” John 11:35

I know it doesn’t sound amusing.. but for a kid? Finding the shortest Bible verse seemed like a challenge…

…and…?

I got the same big treat as my siblings who recites longer verses…

But as I grew up?

That verse came to mean a lot to my heart.

You see?

My superpower is feeling other people’s emotions…

…and well?

I cry.

…I cry a lot…

For most of my childhood and teenage years? This embarrassed me … and I fought to control those tears.

But this verse? Jesus wept. It echoed through my mind every time I teared up. I mean? If it was ok for Jesus… a grown man.. to cry in public because He was sad? If it was acceptable for the Son of God to weep openly… even though he knew that God had everything under control? Even though He KNEW that everything would work together and be beautiful … in its time?

If it was ok for Jesus to weep … even though He hadn’t lost faith in God?

Then maybe.. just maybe…?

It was OK for me to cry when I was overwhelmed.

A few weeks ago, a friend asked me to speak at her church on Mother’s Day (..ha.. I know.. it was more than a few weeks…) about my experience in parenting. How parenting a strong willed, independent sassy daughter and a son with autism (and a side of mood disorders) changed my life.

My first response was… I can’t do that… I’ll cry… in front of a whole congregation of people…

… just like Jesus did…

Then my second response… what would I talk about? How do you take 21 years of trials… errors… tears… laughter… and love… and condense it into 20 minutes?

The day I was to speak at the church was the day before my son was scheduled to start “college”. The day before we were to move my son into a dorm and he was to begin his road to independence.

Sooo… it seemed fitting to talk about how we had moved on from each disappointment… toward hope and a future. How we had taken each path we were on and looked for some good that we could do while we were there.

So I based my message on my other favorite verse…

“For I know the plans I have for you,” declares the Lord, “plans to prosper you and not to harm you, plans to give you hope and a future.” ‭‭Jeremiah‬ ‭29:11‬ ‭NIV‬‬

In front of this church congregation… I talked about how I had great plans for my life… plans to change the world… and how those plans did not turn out the way I had thought they would.

In fact?

My life was nothing how I planned.

I love my life… but it is not the life I had planned for myself.

Parenting is always a challenge.. whether it is a sassy, independent, strong willed daughter…. or a son with anxiety, autism and a mood disorder.

And… well?

I had both.

Every time that my life’s path took a wide turn and took me away from the plans I had made for me and my small family? I would remind myself of this verse.. that God has a plan for me..

.. promising me hope and a future…

So I had accepted each set of changes…

..but first?

First… I had cried.

Tears to grieve for the death of the plans I had made. I cried out all the frustrations from knowing that I had to change yet again…

and then?

Then I had wiped my tears and looked around… and I’d say to myself.. “While we are here, what good can we do?”

While we are in this new place.. with new plans… what good can we do..?

And yes… I cried…

The day after Mother’s Day?

The day after I spoke about hope and a future?

We took our son to his college. We followed the plans he had made for himself.

The first day of his bright new future…

And….

He didn’t make it.

Four years of planning, and in the matter of 24 hours?

All of our plans for the next year changed.

My son and I…. ?

… we wept….

We wept for our broke dreams… his dreams of going to college and staying in a dorm…. my dreams of seeing him independent … and my dreams of being free to start a career.

We wept.

Not knowing which way to go… and having to explore different paths…? We both felt a little lost…

…but we wiped our tears… and said… while we are here what good can we do?

Over and over this summer? Our paths have changed…

Over and over this summer? We have cried…

But today?

Today… as I feel the sunshine on my face? Today as I see some confidence seep back into my son’s face?

I am reminded once again that God has promised my son a hope and a future…

I am reminded that God has promised ME a hope and a future…

He didn’t promise me the future that I dreamed up for myself… but He promised me it would prosper and not harm me…

Sooo….

Let me dry my tears one more time….

…and see what good we can do….

While we are here…..

..On the other side..

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. 

 

 

…balance..

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?