Tag Archives: Children

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. 

 

 

.. decades of work..

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 …

Heroes

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.

Cousins weekend…

Ever since my family moved home to Michigan, I started a new tradition where I picked one weekend, over the summer, and invited all of my nieces and nephews to my house for a sleepover.

Now.. one of my nephews was too old to enjoy this.. and.. some were too young..

..but every year I get a few to come..

Ha! By a “few”.. I mean 10 or more..

This year.. I had 18 kiddos at my house..

Age range .. 4 years to 20!

Doors were left open… noses were skinned… heads were bonked… snow cones were spilled.. a bean bag lost its beans… shaving cream in the eyes… stubbed toes… there were hurt feelings.. disappointment over the rain.. and cancelled bonfires..

…but there was also.. laughter .. games… late night talks.. talking in sleep… snow cones.. sundaes on Sunday… frog hunts.. snuggles… hugs… movie time… swimming… a small obsession with the kitten.. good food… some amazing fairy/gnome/snake houses craft time.. and a lot of new memories made…

Some people ask how me how I can do it?

Well?

I don’t do it by myself. My husband stayed this year for some of it. A couple of my Sisters-in-law stayed and pitched in. This helps with the mixed aged groups. And everyone sends food.

But over all?

I go into this weekend EXPECTING them to act like kids.. and then? I expect chaos. I plan certain activities to give them focus. I provide spaces for them interact.. I give them my expectations.. but give them the freedom to make choices.

And I don’t know? It just falls into place..

But what I do know?

I know that these kids all look forward to it every year… counting down the weeks until it happens.. talking about “next year”…

And every year.. I fall in love with these blessings who create huge messes a little bit more.. until my heart is near to bursting…

So this morning as I clean up beanbag “beans” in my living room.. mop my kitchen floor.. kill the flies buzzing my head… clean up the craft supplies in the garage.. and put away the bounce house..?

I find myself planning for next year…

..footprints..

I watched my son run down the shoreline today.. kicking sand in the direction of his sister. He didn’t even try to be sneaky about it. Laughing at his own antics, he would wait for his sister to splash him in return.. My daughter would pretend to be offended .. and then they repeated the whole scene again.

.. as I watched them play fight.. I noticed the footprints that my family left behind them..

.. the footprints that weaved in and out of the ones that stayed straight and steady…

.. the deep twisting prints of my kids’ playful actions..

… the steady footfalls that others left behind…

It got me thinking…

…it doesn’t really matter what path we take in life… it doesn’t even matter where we are going…

What REALLY matters?

What really matters is how we are getting there… Are we enjoying life? Are we enjoying our family? Are we living each moment to the fullest?

And most importantly?

What are we leaving behind?

Are we leaving behind happy memories? Memories of laughter and playful water fights on the beach? Are we leaving behind feelings of love and being cherished?

What will people remember us for after our walk through life is finished? Will they remember how hard we worked? Or how we enjoyed life? Will they see the impact we had on others?

When I looked up from those footprints in the sand.. I watched my kids with a tear in my eye… (maybe more than one tear)..

I think both of my kids will leave some pretty special footprints through life..

both sets different ..

but equally beautiful in their own way…

That makes me one proud momom…

This …

Every once in a while something comes along to remind me of the start of our journey we call “Autism”…

This….

http://on.today.com/2opmM7q

As a parent of a kid with special needs.. you have to go through a grieving process.. You have to give up your expectations for your child.. you have to give up those dreams you had FOR them… and it’s hard…

Really hard….

..and then you create new dreams. Ones that feel like you are giving up on them at first…

… but it’s really hard…

People often tell me how strong I am… but.. there isn’t really a choice. I move forward and we push for every goal..

.. and it’s been hard..

…but it was worth it all..

At 19? My son is amazing and I see the dreams he has.. and I see a future that will be good.

…but it’s still hard.. and I remember feeling where this mom is at in the video… and the memory makes my heart hurt.. wondering what My boy would be like if Autism hadn’t altered the course of his life.

.. but for me?

.. for me, I began to think that maybe Autism was supposed to alter mine.

Wherever my son goes?

He spreads happiness and hope through his smiles and his struggles…

… and he doesn’t miss the dreams I had for him at all…

…because you see?

He has his own…

..the game of life..

.. this Christmas Eve I had the pleasure of playing the game of Life with my nieces and nephews…

..now…?

Most of these nieces and nephews were well below the suggested age bracket of “8 and up” that was printed on the box…

But they all wanted to play… so we opened the box… and put the board together.

… when I pointed out the starting place on the board.. one of my nephews looked at it with doubt.. and said that it looked more like the end of the game…

HA ha…

I think more than one person would say that starting a career or starting college would be the end of their life.. or at least the end of all things “fun”…

.. as I tried to get them all focused on setting up the game to play… they were FAR more interested in filling their cars full of kids … or visiting their uncle Tim in Jail.. or picking out their houses.. and definitely running over their little people…

.. finally I gave up trying to show them the rules and just watched them play.. I watched them drive their cars backwards on the roads.. ha .. that is IF they stayed on the roads at all..

As I watched them play?

I couldn’t help but think how they represented the world around us.

Not everyone wants to follow the rules of Life..

.. and some people don’t get the option of starting at the beginning.. OR following the road exactly..

Some of us start OUT doing things according to the rules.. traveling the roads in the directions we are supposed to.. ONLY to find a detour (or two) that takes us off the main stream road..

…special needs

…widowed

… job changes

… house fire

The point is?

The point is.. that there is no “perfect” road through life. No rules that apply to every person..

Who was I to tell them that my game “rules” were more fun than the “rules” they were playing by… ??

…so I laughed.. and pointed out to my nephew that it didn’t matter if he was driving backwards on the road.. but that Jesus wouldn’t want him to run over his kids…

… He looked down at the game pieces and scowled..

“Those aren’t my kids.. that’s my wife.”

I silently vowed to never loan him my keys as I helped his poor wife back in his car.

..washed away..

With all the rain in the south, it seemed trivial for us to worry that a sprinkle of a rain would ruin our hike yesterday… so hiking we went.

Up a VERY steep hill to see the Dead River Falls..

For me?

For me .. I was going up that steep rocky hill in flip flops..

You see? I had not anticipated that we would have time to go hiking .. so I did not come prepared with hiking shoes.

But I would never miss a chance to see a piece of wilderness.

And a beautiful piece of wilderness it was. Rugged and untamed… At one point, I left my shoes behind and continued bare footed. Not as comfortable as I would have liked (and I wouldn’t recommend it). But I was able to experience laughs with my kids, see them marvel at the beauty of it and I took so many pictures..

So prepared or not? It was worth it…

As I walked back to the rickety log bridge… I saw the most beautiful sight. A tree that stood strong and healthy.. even though half of the soil was washed away from its roots ..

The soil was washed away.. Big rocks pushed up from underneath.. it looks like gravity and a little wind would push that tree right over..

.. yet there it stands.. strong and sturdy…

And it brought tears to my eyes..

As a parent of a child with special needs?

I feel just like that tree..

.. 18 years of Autism.. 18 years of tears.. 18 years of letting go of how “things were supposed to be”.. 18 years of learning new autism research.. 18 years of medical issues.. 18 years of having life wash away at the roots I had dug into the Earth…

I should have fallen over long ago..

… but I have also had 18 years of laughter, 18 years of watching this boy grow with joy in his heart, 18 years of discovering the beautiful soul buried beneath the surface…

The laughter and joy have kept me strong and sturdy… despite the feeling of being worn down..

As I pushed back my tears.. I walked back across the log bridge .. ..my son ran towards me with a smile.. and his hand outstretched to me.. and said with confidence, “Here Mom, take my hand.”

Ok Buddy… I will take your hand. And no matter how prepared we are? …we will make it strong and sturdy…

Faith like a child

Warrior child...
Warrior child…

One of my nephews is 3 years old.. Bright blue eyes, amazing smile.. Generous heart and so funny. And he has a tumor behind his right eye. It’s not cancerous. So, although it is scary for us (his family), it isn’t really life threatening. But he still has to endure chemotherapy treatments for 18 months. Treatments that could save his optic nerve from further damage.

6 months into chemotherapy treatments..? I have learned a great deal from watching this boy and his parents. You see this boy..? This little warrior? He has to do a great many things that are hard.. Hard and painful.. And sometimes just not fun. But he does them. He gets cranky, tired and restless … But he does them…

This little warrior accepts what he has to do .. And just does it..

Why?!?

Because his daddy and mommy tell him that this is the way to keep his eyesight.. And although it is hard (for all of them) they have to do it because they love him.

And through eye exams, MRI’s, chemo port installation, long doctor visits, hospitalizations, painful port accesses… I have seen tears in their eyes more than once. But they keep on moving forward .. Having faith that everything will be beautiful in its time.

Why does this boy just accept all this as necessary?

Because his parents told him that this is the way it has to be. That in the end? In the end being able to see .. will be beautiful.

Does that mean he never asks “why?”

No.

Does that mean he never cries?

No.

Does that mean he never states he doesn’t want to go for more tests?

No.

But he still does.

Jesus tells us that he wants us to have faith like a child.

Truly I tell you, anyone who will not receive the kingdom of God like a little child will never enter it.” (‭Luke‬ ‭18‬:‭17‬ NIV)

I didn’t understand that verse clearly until this year. I didn’t understand it until I watched the faith this child .. This little warrior ..has in his parents.

You see my nephew trusts that his parents know what is best for him. He trusts that this is the best plan because they told him it was. And no matter how much he doesn’t enjoy it, he trusts that his parents know that everything will be perfect in the end.

Is my faith like this child?

Ha.. I wish it was.. I want it to be..

But sometimes my heart cries out “why Father?” Why does my son have to struggle so? Why does my nephew have to suffer these treatments? Why do things happen that make me sad? Why?

Then? Then I always pray that God will take my doubts from me.. Take them so that I can just move forward and know that everything will be good in the end.. So that I can trust that my Heavenly Father knows this is the only way. That my Father knows everything will be Beautiful in the end.

Only when those doubts are replaced by total trust.. Only then will I have faith like a child.

THAT is what I have learned from watching my little warrior.