Search

Speaking in Cursive

Walking through this extraordinary life.

Category

Uncategorized

A dog named Rowdy near McCarville Road.

We had planned this anniversary trip for months. Celebrating 27 years of marriage. My husband had found a beautiful cabin, in the middle of nowhere. I was so excited. He had mentioned there would be no internet or cell phone reception. I was actually happy about that. Until we got there, and panic set in. How would I reach home? What if they needed me? What if something went wrong? But what if it didn’t?

IMG_0105About 10 minutes from our destination, my cell phone stopped. I was regretting booking this place. So many things that could go wrong. We were entering another Fall of goodbyes with our children.The oldest still in China, The 2nd oldest and his girlfriend about to move to Seattle, and one of the twins and his girlfriend ready to return to college for their junior year, about an hour and a half from home. I was filled with angst, and sadness, excitement and fear for all of them. Happy I still would have our Brett at home with us, and of course my 3 puppies.But I felt as though things were starting to spin out of control again,things moving in all different directions, none of which I could control.So we had planned this trip knowing I would, we would, need it. You can’t just make impulsive trips when you have a child with autism(adult now). You can’t leave him alone, so you plan it around your other adult children, to be home. I knew they would be okay, but we have never, ever been out of communication when we leave home. Never. Suddenly we had no choice.

As we pulled into the driveway of our getaway location, we were immediately met by two adorable Jack Russel terriers.They began to bark and ran up to our car. Instinctively we both got out and started calling to them, to come to us. They did.Looking around we couldn’t see the caretaker. He had told us the unit would be unlocked, to go in. So we did.To a beautiful cabin,done all in North woods design. It was stunning, and I should have been instantly at peace, but my heart was racing, and I was in panic. What if they needed me.

We went outside, and I sat on the ground, as did my husband. Here, coming from the green fields on the property came Trixie, the momma dog and her son Rowdy. Within seconds they were in our laps, licking us, kissing our faces. I didn’t know I needed them, until that moment. I think they needed us too. We walked the property, looking for Bill, the owner, as these two dogs became our shadow and our tour guides.With each step I could feel my heart slow and my mind relax. The what ifs that had paralyzed me, were becoming a distant memory. Later , Bill came to our door. My husband explained our home situation, and our need to have some communication with our son. He told us we could use his home phone at anytime. At that moment, I took a deep and soul cleansing breath.

We sat and talked with Bill for a while about his puppies,and how we just loved them.He told us how smart Trixie was and could do many tricks, but Rowdy was as “dumb as a stump”. He explained how at one point his daughters had County Fair award winning chickens, until one day, he came home and saw feathers flying, and a chicken hanging from Rowdy’s mouth. That is when I fell in love with a dog named Rowdy.

Over the next two days, we would go for long walks down McCarville Road, a winding country road where there must have been 50 shades of green. From emerald to sage. There was mile after mile of fields of corn. The hills, valleys and ridges filled with acres of wildflowers and birds. We would walk and talk and laugh. We would take in the beauty and the sounds all around us. We were living in the moment, not wondering or worrying what could happen.We just were.We put on over 12 miles in 2 days. I craved more.

Each time we appeared back on the property, there they were. Trixie and her boy Rowdy. Eventually, Trixie took a step back, to let her son get the attention, and lead the way. He took us out on the property to the trout stream. He jumped in, then rolled around on the grass. Then he would jump into my husbands lap. He was so enjoying having this love heaped upon him.Then he would come by me, doing the same thing, lavishing me with his love.And Trixie faded further into the background. Like she knew she had to let him go.

On our final night, we sat outside with Rowdy, Trixie nowhere in sight. I thought to myself,I know how she feels.We have them, we raise them, and eventually they leave.We fed Rowdy some scraps of our dinner and held him in our laps a few more times.We both felt an immense and deep love for him. Silly to some I know, but there was a connection there.My husband said “it’s like they were there just for us.” I believe they were. We said our goodbyes to this new boy in our lives, and entered our cabin, closing the door behind us. Rowdy wouldn’t leave. For over an hour, as day turned to night, he sat there, facing the door, waiting for us.I peered out our bedroom window, watching him, almost in tears, knowing if I opened the door, the goodbye would be that much harder.And I wondered where his mom Trixie was, and how could she not be worried sick over where he was. Then I realized, just because they’re out of sight doesn’t mean they are out of mind. Sometimes you just have to let them go out on their own, knowing they eventually find their way home.

Sink or Swim (and other life lessons I learned growing up with a backyard pool)

I was only 3 but I remember it clearly. Learn to swim my parents said, so they threw me in, right in between my oldest sister  (almost 16 yrs older than me)and her husband. Sink, or swim. I guess my instincts or something kicked in, because I remember swimming, right to my brother in law. And just like that, I was a swimmer. Everything I learned about life, from that point on, I learned in that pool.

Local legend has it that there was a pool salesman that lived on our street, so every house, or so it seemed had a pool. But ours, ours was the best, the king of pools. And my parents made sure it stayed pristine, even to this day.I spent every waking warm moment in that pool and learned lessons that shaped who I am.

Trust: You have to trust those around you, and believe they will do what they say they will.

I was so scared to jump off the deck or the ladder, or go down the slide. Petrified. My mom said she would catch me, if I went under, she would pull me up. Or my dad, would wait at the base of the slide, to grab me before I would go too far under. They always did. They  always caught me, before I went too deep.Until they didn’t have to anymore, because, I trusted myself, my own judgement. And to this day, even in their advanced years, they still do. I still trust them, and others because of them.

Be Brave: Sometimes, or all the time you have to face your fear,to get to where you want to go.

Our pool had this amazing slide, very tall, or it seemed so when I was young. I wanted so badly to go down it,  I must’ve been about 5 or so.I climbed up and made it to the top, and wanted to turn around and go back down the steps, but one of my sisters was right behind me, blocking the way.”No, you can do it, it will be fun. Just try.” I am sure tears were shed, and maybe a fit was thrown, but then, I tried. Someone was at the bottom to catch me, and I swam to the other side. Then promptly did it again, and again, and again. There are so many times I want to quit things I am about to start, because I am convinced I will screw it up, or do it wrong. But when I just follow through, I realize, there wasn’t anything to be afraid of. I STILL go down that slide. I am usually a tad scared climbing up its old stairs now, but I do it.

Dive into Life: Don’t sit on the sidelines and watch others having fun, dive in.

We had this diving board that I could’ve sworn was an Olympic diving board. Seemed so big when I was small. Our pool was deep, about 7ft I believe.So my dad and mom taught me to dive. Sometimes all of us kids would line up, one right after another, and dive in. Different ways, silly ways. Belly flops, jack knifes, but we all dove in.There are so many ways to jump into life. We don’t all have to jump the same.You just have to do it. I am Still the 1st one out on the dance floor at a wedding reception, no one can do The Elaine better than me.

Ride out the waves: Life is not always smooth sailing, and sometimes you just have to ride it out.

My dad would always get the best inner tubes for us to have in the pool, and we would fit as many people as possible as we could on it, and “bob” up and down. Trying our best to, not only knock each other off, but also, to create massive waves. We would do this for hours.(It was an amazing ab workout, and probably why I didn’t crack the 100 lb weight mark until after high school)There was always a victor, and a loser. But we never gave up, we fought against the waves as they tried to push us under the water. We climbed back on. Life is like that, sometimes, it is calm and peaceful, and then the waves come. You have two choices really.Keep swimming, even against the waves, or go under, quit. For me, I choose to ride it out when the waves come crashing in on me. Even if I can only doggie paddle through it, I refuse to quit.

You don’t need a lot of friends just a few great ones: Know your circle, your true friends.

It would be a boiling hot day, the doorbell would ring.”Mary, your fair weather friends are here.” I used to hate it when she would say that, because I didn’t understand what she meant. Fair weather? To me, at the time, they were just friends.I mean sure, I didn’t see them all fall, winter and spring long, and they never invited me over, but they were here now, right? They just wanted to swim. They certainly weren’t like my real friends, my yearlong friends. The ones I built snowmen with or jumped in the leaves with. My real friends loved me through all the seasons. The rainy days, the bitter cold, the dark and dreary. They just loved me.  My real friends and I would spend hours, from sun up to sun down in that pool. Only getting out to eat, pee, or watch As The World Turns. My real friends and I would build tents made out of blankets and sleep under the stars, and sneak in the pool at midnight, being careful not to wake my parents. And you know what, my real friends then, are Still my real friends now. Those fair weather ones, well, they only stuck around when times were good, and the the skies were blue.

Work hard for what you want: Most things don’t come easy, but hard work is worth it.

My dad came up with this game. He would save change throughout the year.When swimming season started he would throw the change to the deep end of the pool. Whatever we grabbed , was ours. It didn’t matter if it was a family member or a friend. If you swam for it and got it, it was yours. So there we would all be, holding our breath as long as we could, trying to grab metal off a slippery sloped deep end. Treading water to stay under as long as we could hold our air. This would go on for  a long time. We would feverishly swim back up to the shallow end and plunk our pennies and nickels down, and go right back under. It was exhausting, but the reward was Worth it. I had worked for this money, I was tired, but I kept going back. That’s what I saw my dad do, everyday. Up early and out the door before our feet hit the ground. Everyday, until he became so sick, he no longer could work. I was 9. And it killed me to see it killing him to no longer be able to work. So there was no way I wasn’t going to work hard getting those pennies, or for my dreams. Nothing comes easy. And usually nothing is handed to you either. So if you have to swim to the deep end to get what you want, get swimming.

Laughter is the best medicine: Find the good, find the happy, find the joy.

I think the laughter from over 40 years is probably still bouncing off the waves in the pool. My sisters and I played this hairstyle game( ironic , right?) We would all go under water at the same time and pop up with a new hairstyle. Except every single time, we looked like George Washington. And we would crack up, each and every time. That tradition carried on with my nieces, and now their girls. Generations of families, neighbors and friends have filled that pool. I love to watch my boys, making up games with their cousins in the pool. Each game has new rules, and tremendous amounts of laughter. My parents usually don’t go in the pool anymore, at 84 and 80, it isn’t easy. So they sit on their back porch, and watch what they created.Their children, grandchildren and great grandchildren,laughing, and playing.Learning to SWIM.

 

 

Running to stand Still.

I went to church everyday for a week. I sat in the front pew. I heard the sermon loud and clear. I was listening to God.

We went on vacation last week. We rented a cabin, on a small no wake lake. We try every year to get away from it all. We don’t jet off to the Caribbean, or go to Disney World. We don’t search out risk taking adventures, we seek out life changing moments.

Like most adults, I am sometimes so busy I forget to live. I forget to breathe and take it all in. I stop stopping, and just stand still. There is always something that needs to be done, or somewhere that needs to be gotten to.The house needs cleaning, the dogs need walking, the shows need watching.  I worry about everyone and everything. How are my children, are they safe, happy, healthy? How are my elderly parents? I stay awake with worry over things I can not control.And life keeps going by.  And I stop hearing God. I stop hearing Him. Sometimes a whisper, lately a scream. But I am too busy to hear Him. I have things to do. Things that somehow never get done, but I keep running on that treadmill to achieve it all.I am tired.

My husband and I have talked for a long time about just moving, just going. Deep into the woods, maybe with some water near by. I don’t need a big house. We have begun looking into properties, planning, wishing, hoping. There has always been something holding me back.The kids, the job, etc. But after this week at church, I was all in.

Every morning for the week away, I was up, early,(I average about 3 hrs of broken sleep a night due to my MS I suspect and worrying.) alone, except for the birds. I would make my coffee, and walk down to the pier.I would sit and just listen. Just be still(something very hard for me to do.)I would watch the fish swim, and the hawks fly. I would close my eyes and hear the wind blow through the leaves on the birch trees.And I could hear God. I could hear the symphony he had written, just for me. Just for my extremely exhausted soul.”Be still and know that I am God.” So I would, be still. I would take a deep breath, and just be. I would look up to the sky and watch the hawk soar above me, circling around me, as if to say “you are safe.”I could feel my body relax, as the sun shone on my skin. I would dip my feet in the warm lake water, searching for the turtles.And I would praise God. For loving me, for protecting me, for forgiving me.I could feel His warmth all around me. I was where I was supposed to be.I was home.

I grew up in a city, but raised my family in a small town. Sometimes through the years, I yearned for city life again, the excitement, the hustle and bustle. I yearn for that no more. Now my yearnings are simple and basic. My husbands family is originally from up north, so it feels right to eventually return. We are getting our ducks in a row, forming a plan, and making it work. Now I can picture, me  and my husband outside, either by the trees or the water.Holding my coffee and hopefully some grandchildren. In the front row pew at Church.

I am listening God.

 

Emotional Paralysis

It’s been quite a while since I wrote here. Once again, I failed at continuing something that is probably beneficial to me. What’s new, right?  I’ve thought about this post for we…

Source: Emotional Paralysis

The apple that fell across the ocean

I can still remember the conversation, though I doubt he does. He was 15 and was pondering his future. “I just don’t feel this town has anything for me.” he said. “Right now you are a big fish in a small pond” I replied. “Someday, you will be a small fish in a big pond.” I just never imagined it would be an Ocean.

My son lives in China. He teaches at a university in Hangzhou.

Most days I have to remind myself of this. He is no longer just 10 hours away at school. He is oceans away, across continents and time zones. When people find out he lives there( already 2 years) they ask me “how could you let him move there?” That is usually the part I laugh, because, that has never been how we deal with our son.

I like to describe my son as George Bailey, from It’s a Wonderful Life. When George is sitting at the dinner table with his father, and his dad says to him ” you were born older, George.” that is how I see my son. An old soul, searching, yearning for more.We have video of him at 18 months, drawing faces and shapes and asking me to do the same. “What shape is this Tony?” I would say. “Octagon” he would mutter with his pacifier hanging from his mouth.Then it was dinosaurs. “Draw an Ornitholestes mom.” I would have to look up what the heck he was talking about.He knew them all, by 3. It was always something, he just craved learning and knowing more.

My husband and myself  are not big on far off adventures or traveling . Heck if we go a few hours away, we consider ourselves lucky.When the kids were growing up we took them on vacations, but usually just “up north”. So where he got the urge to travel and see the world I will never know. In his almost 25 years he has become a world traveler. His first out of the country trip came when he was 16, to Germany, with the high school. In my mind that is when it happened. His need to see the world. In college he studied abroad in Austria, and saw many of the surrounding countries over there. One of his Bachelor degrees is in German studies, so we assumed( and you know what they say about people who assume!) that possibly he would end up there, and we were okay with that. As okay as a parent can be with a child living out of the country, I guess. So when he sprung China on us,I couldn’t breathe.China. Either we are horrid parents and he is trying to get to the exact opposite side of the world from us, or we did a pretty good job. The jury is still out.

He graduated from college the Spring of 2014, and I watched the days on the calendar turn until his departure in August. How can he just go to a country, not knowing a soul, at the time only knowing a little of the language. How can he be so sure of himself? How can he be so determined? We took him to the airport, hugged him at security, and tried not to lose it until we got to the car. We barely unlocked the doors to the vehicle when not only did the skies open up and begin to pour, but so did our eyes. And there in a car in the airport parking lot, my husband and I cried our eyes and hearts out.Our son was moving across the world.

Now, our means of communication are Facebook or Skype. I joke with him about not responding to my posts to him, or not returning my messages. One time I sent him a message asking if he wanted to Skype soon. He responded 10 days later, “can’t right now mom, I am working.” Sometimes I will simply send a message asking if he is dead, which usually garners a faster response. I can still work that Mothers guilt thing when I want to.I find myself sometimes incredibly envious of the parents  who have adult kids  that have decided to stay close to “home”. The ones who have their kids and grandchildren over for dinner, or take trips together. They have no idea how blessed they are. But then I remember that conversation from 10 years ago.

Last night we Skyped with him, after almost a month of little to no communication. It was great to hear his voice and see he is happy. Two of his brothers were also there to talk with him. As usual he lit up when he saw his “puppies”. I asked my usual questions like” when are there going to be grandbabies?” At one point, my husband asked him if he ever had Lemon iced tea. “You see guys, this is why we shouldn’t talk every day, this is what we would have to talk about!”he said.Maybe he is right. Maybe for him, he is confident in the love we have for him, that nothing, not time, or distance will change that. He knows we will always be here, in the small pond,supporting him and his next adventure. I keep asking how long he plans on staying there, to which he responds “when I am completely fluent in the language.” I have no clue how long that takes, but I also know, he will never come “home” to live. After China I am sure there will be some other place he will need to be. A new adventure. A need to learn something new about somewhere new, to calm his old soul.But sometimes, a mom just needs to hear a voice and see a face to keep her treading water to stay afloat.

They were Somebody’s Someone

And the greatest of these is Love.

I only hate one thing. Hate. I can not wrap my head around what happened in Orlando,or anywhere else these horrible murders have taken place. I can’t get my brain or my heart to go there, to that place of evil, that would allow you to commit such an act.I just do not understand. Every person killed was somebody’s someone.

A son

A father

A daughter

A mother

A nephew, A niece.

A grandchild.

A neighbor, A friend.

They meant something, to someone. And shouldn’t that be enough? As a human, shouldn’t that count? Shouldn’t it stop them in their tracks? Because aren’t they somebody’s someone?

I think of the mother who was there, and covered her sons body with her own, to save him. She was killed, he survived. That is love.To lay down your life for another. Not to take another life.I don’t have the answers, and I don’t pretend to. I just hope that when I raised my sons, I taught them to stop and help those in need, to be kind to everyone, Love everyone. That we all hurt, and bleed and  need love.

 

Embrace more than you are embraced
Hear more than you are heard
Lead more than you are lead
Help more than you are helped
Console more than you are consoled
Touch more than you are touched
Protect more than you are protected
Soothe more than you are soothed
Heal more than you are healed
Please more than you are pleased
Trust more than you are trusted
Adore more than you are adored
Forgive more than you are Forgiven
Love more than you are loved
What goes around should come around,in the end

 

 

Of Buckets, Beards and Birthdays

“Learn from our mistakes”, we said to him. Saying what every parent says at some point to their child. I don’t even remember what we were talking about to say that to him, but I will never forget his response.”But what if I am supposed to learn a different lesson.” Frozen in my tracks, it changed how I parented forever.My stubborn, strong willed, middle son had just taught me an invaluable lesson.

Today is my son Nathan’s 23rd birthday. The age I was when I had him. He is my second son, my middle child, even though there are four sons.(Twins are the youngest).  From the day he was born, he was stubborn, and silly, and tenacious and unique.  He crawled by 5 months, walked at 10 months. At about 1.5 yrs old, he became obsessed with Frosty the Snowman. We watched it over and over, for about 2 yrs. He would find a bucket, and that was his hat. He would NOT let us take it off. We would struggle to remove it at bath or bed time.He would win. Buckethead prevailed.

At about 3 years old he fell in love with Santa Claus. He dressed like him every day. Full outfit. It could be 100 degrees outside, he had on his beard and wig. He dressed like him for Halloween. The neighborhood girls would pull him in a wagon around town, as he yelled” Ho Ho Ho Merry Christmas!” every day, year round. We tried to distract him, but no, He was Santa, and that was that.Eventually,he had us call him Scott Calvin, from the movie The Santa Clause. This kid was going to live life his way. We just were along for the ride.

His school years started and they were met with excitement and struggles.He had some very major health scares. When you are told your child more likely than not has cancer, will need surgery and treatment, your world stops.He was 6.The specialists were convinced he had lymphoma,and took him away for surgery. And my husband and I were devastated. One song  played over and over in my head  He’s My Son by Mark Schultz

I’m down on my knees again tonight,
I’m hoping this prayer will turn out right.
See, there is a boy that needs Your help.
I’ve done all that I can do myself
His mother is tired,
I’m sure You can understand.
Each night as he sleeps
She goes in to hold his hand,
And she tries
Not to cry
As the tears fill her eyes.

Can You hear me?
Am I getting through tonight?
Can You see him?
Can You make him feel all right?
If You can hear me
Let me take his place some how.                                                                                                                    See, he’s not just anyone, he’s my son.

Sometimes late at night I watch him sleep,
I dream of the boy he’d like to be.
I try to be strong and see him through,
But God, who he needs right now is You.
Let him grow old,
Live life without this fear.
What would I be
Living without him here?
He’s so tired,
And he’s scared
Let him know that You’re there.

Can You hear me?
Am I getting through tonight?
Can You see him?
Can You make him feel all right?
If You can hear me                                                                                                                                              Let me take his place some how.
See, he’s not just anyone, he’s my son.

They told us after the surgery, the Oncologist and surgeon would take us to a separate room, to plan his treatment. The doors opened, and my husband and I stood up, expecting to be taken to the room.”Sit down.” the surgeon said.” I don’t know how or why, but it’s not cancer. Everything pointed to cancer.”  Buckethead 1 Cancer 0

As he got older, the adventures of Nate continued. Like the year he decided to change how he laughed. Like it’s a choice? But he did. He said for 1 year he would only laugh  “HA!” And for 1 year, he kept that promise.One, single loud HA! Which of course only made the rest of us crack up. And I miss hearing his HA so much.

Buckethead grew up, and graduated and moved away for college. Graduated from MMI and then moved again. And now he is about to move across the country to Seattle, with his girlfriend Emma. And as happy as I am for them, to be starting a life together, I wish I could have him back home, little again. Wishing I could spend countless hours watching Santa movies in the heat of summer with him. But he has lessons to learn,that I can’t teach him. Because he might learn a different lesson than I would.It is his journey.

He has his own dreams and life wishes. He has to do what he wants to do.Kind of like he always has. We might have different beliefs, and opposite ways we view some things.But one thing will never change, the love and respect I have for him.And how grateful I am to have learned so many lessons from him.

Happy Birthday Scott Calvin.I  love you. HA!

12931274_10153514578345108_957176838064194640_n

 

His brothers keeper

And love will hold us together
Make us a shelter to weather the storm
And I’ll be my brother’s keeper
So the whole world would know that we’re not alone

I shouldn’t have been surprised when the doctor told me I was having twins, simply by looking at me from across the room. Twins are everywhere on my husbands side of the family. Twin sisters, nieces, cousins. Yet somehow I was still shocked. How in the heck could we handle two more babies. At the time we already had a 4 year old and 2 year old son. So at 14 weeks along when the ultra sound showed two more boys, we were speechless.But we were so excited at the endless possibilities about to come our way. We had no way of knowing what the future actually held.

They came into the world fighting, 6 weeks premature.Yet, were by all appearances healthy.They continued that path, for the most part, until about 2 yrs of age. That is when we noticed some delay’s in Brett, but looking back, I see we were in denial about just how many and how severe.The summer before kindergarten they had their screening. The teachers pulled me aside and said they wanted to put them in different classrooms come fall. They were concerned that the twins were relying on each other too much. That Bryce was worried about Brett, and so he always “helped” him.The teachers felt it would help Brett become more independent. I reluctantly agreed. Honestly, I was more worried about the inconvenience it might cause me, having to deal with two rooms and two sets of rules.How selfish I was. So I agreed.

Every morning, I would walk them to school. I would watch Bryce go into his classroom, and I would hold Brett’s hand as he cried,wanting to go with his twin, his best friend.It was heartbreaking.They wanted to be together. They needed to be together.But, they shouldn’t be together. They were two different souls, on two very different trajectories.Just how different I had no way of knowing. I also had no way of knowing, at the time, how much pressure I was about to put on Bryce.Asking him to be my eyes and ears when I couldn’t be.To be his brothers keeper.

Once in 1st grade, I asked that they be placed in the same homeroom. Seeing as Brett would be pulled for special ed most of the day, I felt being able to go into the same room every morning would help ease the stress.They obliged, and from that year until high school, they were put in at least the same home room.And while Brett struggled, and fought every step of the way, Bryce was labeled Gifted and Talented in 2nd grade. So I was dealing with I.E P’s and College for Kids. I was straddling a tight rope. So in my ignorance I put a lot of responsibility on Bryce, to watch over Brett. Every morning I would say to Bryce,” Make sure you sit with him at lunch, make sure you help tie his shoes, make sure you help him zip his coat, make sure you help him with his locker….” the list would go on and on. I did this every damn day for 8 years. I honestly had no idea the pressure I put on him. My husband and I jokingly referred to Bryce as “the informer”. Each night we would say “how was school today, what did Brett do?” He would fill us in. Telling us of the events of the day, and all things Brett. “He couldn’t get his snow pants on mom” or “He fell off the jungle gym at recess, mom.” Each day we would hear all about Brett’s day, and we could feel the sadness in his voice. He was so concerned about his brother, his twin. And he was my spy, so I felt like I knew everything that was going on. Recently we came across an old home video. Bryce is talking to his brother Nate about how Brett sat alone at recess.”Bryce you have to play with him” Nate said. “I know.” he said.

I saw the twins, as just that, Twins. A duo, a group, yet a singular being. We didn’t say their names individually.We said “the twins” or “the babies”. Somehow, I had lost that Bryce was his own person apart from his brother. He had his own dreams and goals.I just was too busy making sure he took care of Brett when I couldn’t. I didn’t even see the pressure this put on him.Until the summer going into their freshman year. There would be no more same homerooms, or lockers by each other. Their paths were about to diverge, and there was nothing I could do about it, except let it happen. Bryce came to me one morning that summer with such a concerned look in his eyes. Those that know him personally, know that Bryce is a man of few words. He does not seek nor want attention. He avoids it. And he certainly doesn’t share his feelings. So I knew something was bothering him.”What is it?” I asked. It seemed like an eternity but then he said,”Mom, who is going to open Brett’s locker, or make sure he gets to the right class? Who is going to make sure he changes into his gym clothes?” He kept going, asking me, basically, who is going to do for Brett what he had done all those years? That is when it hit me, what I had done to him .I had made him be responsible for someone else. “That is not your problem honey, that is mine.I want you to enjoy high school, and do the things you want.Brett is my responsibility, not yours.” And I felt so ashamed, and sad. How did I put so much pressure on him?

As expected their high school years were quite different. While Brett had I.E.P’s all through high school, Bryce had advanced classes. He was gifted academically and athletically. He had more friends than I could count. His high school years were filled with social events, and prom and homecoming courts and with all conference awards for sports. He was Bryce. Singular. And while he would still fill me in on things he heard Brett had done during the day, it wasn’t expected of him to know or to tell. When the time came for Bryce to choose a college, and move away, we left that up to him. It was his life he had to live. Not ours and not his twins. He continues to amaze us with his academic abilities (Deans List 4 semesters straight!)  and with his quiet strength and compassion.While away at school he would text everyday, usually asking “what is Brett doing?” I think, maybe, even without me telling him to, he would’ve watched over him all those years. You see, he never stopped being his brothers keeper.

Alphabet Soup

It has been 8 days since our last D.V.R. appointment, and no word on our next meeting or plan. I am tired of meetings, and case workers and no jobs for my son or no answers And I am frankly tired of sifting through this alphabet soup.

Since 2001, it seems as though our life has been ruled by initials. I.E.P’s, E.E.G’s,D.V.R, A.S.D., C.E.S.A. The list goes on and on, and I am screaming S.O.S.! I just want answers, a plan, and words that are real words, not codes.

Our son Brett had his first E.E.G.(An electroencephalogram (EEG) is a test used to detect abnormalities related to electrical activity of the brain. This procedure tracks and records brain wave patterns. Small metal discs with thin wires (electrodes) are placed on the scalp, and then send signals to a computer to record the results.) in 2001 after suffering a seizure while at school. It would not be his last seizure or E.E.G. Later they would also test him with a sleep deprived E.E.G.(we had to keep him up all night, then bring him in for the test so they could try to induce seizure activity.) They wanted him to fall asleep hooked up to all these wires. He was in a hospital bed, with the rails on the side up. He couldn’t or wouldn’t fall asleep, so I crawled in with him. I think I was out before he was. He was diagnosed with complex partial seizure disorder.(Complex partial seizures last 1 to 2 minutes. These seizures may have an aura (or warning). Complex Partial Seizures include automatisms (such as lip smacking, picking at clothes, fumbling), unaware of surroundings or may wander.)  So this is when our I.E.P.’s began.

An I.E.P.(An Individualized Education Program (IEP) is a written statement of the educational program designed to meet a child’s individual needs. Every child who receives special education services must have an IEP.) At least once, some times twice a year, we would sit down with his “team” at school. His teachers, his aide, the school psychologist and anyone else involved in his education plan. We would discuss what was expected of him for the year, his goals and long term plans. We did this  for 13 years. And for every single meeting I was a nervous wreck, with a lump in my throat,hoping I could find the right words, to be his voice.

Eventually the letters A.S.D. would be drilled into our brains.

Autism spectrum disorder (ASD) is the name for a group of developmental disorders. ASD includes a wide range, “a spectrum,” of symptoms, skills, and levels of disability.

People with ASD often have these characteristics:

  • Ongoing social problems that include difficulty communicating and interacting with others
  • Repetitive behaviors as well as limited interests or activities
  • Symptoms that typically are recognized in the first two years of life
  • Symptoms that hurt the individual’s ability to function socially, at school or work, or other areas of life

Some people are mildly impaired by their symptoms, while others are severely disabled. Treatments and services can improve a person’s symptoms and ability to function. . According to the Centers for Disease Control and Prevention (CDC)  around 1 in 68 children has been identified with some form of ASD. These initials were and are a game changer.

With the autism diagnosis, we then were introduced to C.E.S.A.(Cooperative Education Service Agency). They would act as a go between if need be.

Eventually, Brett was old enough to sign on with D.V.R.(Department of Vocational Rehabilitation) This is a government agency, that is “supposed” to help train and educate people with disabilities, so they can work and hopefully live independently. We first signed Brett up at 14. Thinking we were doing the right thing.Convinced, by what they had promised, that we were setting a path for our son to reach the goals he had set for himself, and ones we thought he could attain.If I sound less than pleased, it is because I am. I know this, we held up our end of the deal, for at least 6 years now.We did Everything they asked,every test, every job fair, every pointless, drawn out meeting. We were there. Brett hated every second, but we dragged him to everything, thinking that the struggle would be worth it all. Now I am not so sure. During all this we also have used A.D.R.C.(Aging and Disability Resource Centers.

A.R.D.C. and D.V.R. are both Government agencies, and as expected, they don’t communicate with each other. So there have been delays, and misplaced paperwork, and precious time lost. But, we have our ducks neatly in a row. We have done everything both agencies have asked of us. The balls are in their court.A whole bag of balls. I am running out of patience and initials.  I just want answers, and a plan for our son, A.S.A.P.

Blog at WordPress.com.

Up ↑