The Best Gift Ever

This morning I was sitting on the sofa with Matthew and Ira, coffee in hand, watching the news, and trying to wake up. As I sipped my coffee I glanced over at Matthew who was leaned against his dad, smiling, the blankets wrapped around him like a burrito. 

And then, Matthew did this:

He sat up, leaned against me, and took my hand. 

Why is this such a big deal?

Matthew, for the most part, cuddles more with his dad than with me. He's quicker to show more affection with and to his dad than with me and always has been. I, on the other hand, have to ask for hugs, kisses, what have you. I've never understood it and admittedly, I still at times wrestle with it. For the longest time it was me and me alone at the helm, trying my hardest to keep it all and us together so I guess it would be only natural that I would take his affections for his dad a tad personally. And then I thought, how stupid of me. You know he loves you!

And then he reaches out and takes my hand. No prompting. No cues. HE did it! On his own!

Do you know what that does to a mom's heart?

It makes mine skip a beat!

As an autism mom, I've had to let go of some of the hopes and dreams I used to have for him in exchange for a whole new set. I've had to let go of the image that I'd held in my head for so long and learn to accept him for who he is and all the while still pushing him toward the potential I know he possesses. He is not broken. He is not defective. There is nothing in him missing. He is my son! And I could not be prouder of him!

He only held my hand for a few minutes but the hold he has on my heart is for a lifetime!

To all of you warrior moms on this Mother's Day weekend, I wish you and your incredible children happiness and blessings!

Photographs And The Pursuit Of Happyness

There is a campaign going around on Facebook called "100 Happy Days." A couple of my friends and co-workers have been participating and, as I have followed their posts, my curiosity has grown to say the least. Last week at work I finally asked one of them what it was all about. She went on to tell me that there is a website you go to and register (http://www.100happydays.com). Once a day, for 100 days, you are to post a picture or simply write a post of at least one thing that makes you happy. The idea behind is that there is enough going on in the world to steal our joy and bring us down. Can we be happy for just 100 days?

I figured, why not? There's no cost. No adverse side effects. Quite frankly, considering what I have been dealing with as of late, a little bit of happiness sounds pretty good. So I went to the site, registered, and away I went.

Yesterday I posted some pictures of me and Matthew before he headed off to school.

What then? 

75 people hit the "like" button. There were at least 17 comments (well...14..3 were mine).  I could not believe it. I figured I might get a handful of "likes" and maybe a comment here and there but this was not anything I'd anticipated. To many these pictures are nothing more than a mother with her son. Ah! but they are so much more!

These pictures are the evidence of the road Matthew and I have both traveled, of a time when I could not touch my son, hug him, kiss him, show him any kind of affection. A time when I could not tell him I loved him without him pulling away from me, running down the hall screaming, throwing himself on the floor and hitting himself in the head. A time when I was so heartbroken for not being able to tangibly show affection to my son I actually believed he hated me when all it was was my own lack of knowledge for the sensory issues that accompanied autism. He loved me. It just hurt him physically to show it.

15 years later, I get hugs AND kisses. I get tickled. I hear my young man's voice say, "I love you, Momma." Up until about 7 1/2 years ago, his voice was silent. I loved him as much then as I do now. But oh, how my heart sang when I heard his voice for the first time!

That's definitely something worth being happy about!

Blue Lights, Ribbons, And Starving The Dragon

The scars have healed.

They have healed and yet still are visible. No matter how I touch them with my fingers or wish them away, they are permanently etched in my skin. Trophies of what I've no doubt attempted to kill me, I suppose they should be respected and treasured. Right now, I just find them ugly reminders of a dark side I never realized was there. 

I wish I could say that the urge to engrave again has completely gone away but it hasn't. It has been a daily battle, one I have fought with every bit of strength I possess, no matter how small it may seem. Sometimes it comes on me all at once, other times it tip toes but no matter how it chooses to approach me, its presence is like a wet blanket that has been coated with cement laid across my shoulders. 

It's a frightening feeling when that urge hits. I've spent the better part of my life with the notion of not having it in me to do something like this anyhow for any reason. Now that I have, who is to say that I wouldn't attempt to take it further. A rather unsettling thought to feel so out of control. 

World Autism Awareness Day was April 2nd. Campaigns across the country to light it blue, light it red, light it gold, or to paint a rainbow with multi-color lights to show the spectrum in all of its diversity. I live in the lower peninsula of Michigan and for the last two years, the cables of the Mackinac Bridge have been lit blue throughout the month of April. Over the past year I've made ribbons for autism and had contacted the sponsoring organization about making some for the bridge lighting. I was thrilled to say the very least!

And then the dragon came to the door and I found myself in the ring again, dodging blows, jabs, and fiery darts. He poked at my scars continuously and the urge to engrave was almost overwhelming. My body hurt, my stomach nauseous from the pain. 

I am determined. The dragon is not going to win this fight! I will not die! I will live!! I will survive!!!

In those moments of wanting to engrave, I sought my craft bag and went to work instead.  Scissors, glue, buttons, backings, and gemstones. Five spools worth of ribbons were the result. Light bulbs were changed out from standard to blue. My winterberry tree I had bought at Christmastime was brought in from the garage and donned here and there with ribbons. The urge was there, the dragon had roared. But I refused to feed him. 

It has been a month thereabouts since my scars appeared. The urge is there but growing smaller. Though the dragon roars, he will not be fed. I am more than these scars. Four beautiful souls look to me and depend upon me to be there and to fight for them. I am their voice. They are my rock! I will live!! I will survive!!

The Poems On My Skin

There are poems on my skin.

Their couplets etched in blood, each stanza rough and jagged. Each line carelessly scrawled in pain through a stainless steel pen. No rhyme. No reason. 

I used to hear about young people and adults who would engrave their own poetry on their skin. They would talk about the temporary release they felt with each cut, each burn, each scratch, or whatever their means of medium was and how, even for just a moment, the pain they felt inside came to a stop. I listened and ashamedly dismissed these stories as the tall tales of the disturbed. Looking for attention is what passed through my mind along with a myriad of other things. Crazy. Dangerous. You get the idea.

Now as I sit here bearing the scars of my own engraving I realize a painful reality--I am these other people. I touch my hand to my skin's broken edges and I wish that somehow with each touch my skin would go back together as it once was. I run my hand along each surface and ask myself if I am indeed crazy or, at the very least, on my way there. Am I looking for a way out of this rat race called life? Am I simply looking for attention? What is wrong with me?

The truth of the matter is, I am neither crazy nor am I looking for attention. I am not ready to leave this world and I certainly do not want to help myself along. I am battling a dragon that is bigger than myself who, as I have said once before, is coming against me with every weapon, every fiery dart, every jab, every means possible to break me. The pain and the loneliness that goes with it is isolating to the point of being crippling. Simple every day tasks drain me of energy and it takes every ounce of strength I have left to move throughout my day. Each day is a battle. Each day I fight. 

Will my skin contain anymore poems?

I don't know...

I pray not....

And so, the war wages on. I will fight as I have never fought before. The dragon will not win. He may come at me still with everything he has.  He may knock me down. I may bear scars. I will not be beaten down! 

Fighting The Dragon

Have you ever hurt so bad it felt as if your skin were about to break?

Have you ever felt like you were neck deep in water but you weren't getting wet?

Have you ever felt like it was just you surrounded by white noise?

Have you ever felt devoid of everything? No joy, no ambition, no motivation, no anything and you're going through life on auto-pilot? 

If you have, you may have at one time or another shaken hands with the dragon known as Depression. I have met this dragon on more than one occasion. We have done battle many times. Each time we meet, each time we face off, and the battle appears to be over when in fact the dragon is merely hibernating, resting and recharging so that it may fight another day. 

The dragon is waging another battle. He is coming against me with everything he has, every fiery dart, every piercing jab, his breath smoke and brimstone. The dragon is relentless and does not tire easily. No matter how tall I may stand or how I may square off, every fight leaves me weak and worn. I am knocked down and it takes every ounce of strength I have to pick myself back up. 

Sleep eludes me and food nauseates me. Just the sight of food makes my stomach churn and I force myself to eat. I am empty. I am empty in my head, my heart, and my soul. My body hurts to the point where it feels like my skin is peeling off one layer at a time. I'm shut down. I have two faces; one a mask that I very carefully don to muddle through the day to day. The other face is seen by few and even then not always in full view. I put one foot in front of the other on what seems to be a huge treadmill--I'm moving but not going anywhere. I'm empty, I'm worn, and I'm exhausted.

Just how long will this battle wage on, I have no idea. I am sure, as in any battle, there is a course it must run and I somehow must summon up the courage to continue the fight. Will I slay this dragon? Only time will tell. Will the dragon slay me? He will make attempts, I've no doubt. I must continue the fight. I must find whatever ounce of strength is still within me. I cannot let the dragon win!

Rest Now, Little Soldier

The heart of a community, a nation, and especially a family is breaking this night.

Nearly four months ago, on October 4th, a young teenage boy wandered off from his school in Long Island City, NY. His remains were identified today near the East River. 

When this young man, whose name is Avonte, went missing, a city wide search took place. Social media seemed to explode, pages and groups and anything else to keep the flame of hope burning and to somehow bring him home to his family. We in the autistic community, along with the parents of this precious young man, were living every parent's worst nightmare. 

As I read the news update on my break at work, I closed my eyes and felt an old familiar aching in the pit of my stomach. I remember thinking back to when my Matthew was about the same age as Avonte, 14. At that time we were living in a 16X80 trailer in a neighborhood trailer park and we had family that lived two rows over from where we are. The kids would take turns spending the night there and I remember a few such occasions that could very well have ended in disaster. In every one, Matthew was involved.

What do you say when your son comes back home in the early to mid-morning hours while the adults of the house are still asleep? What do you say when your son comes home covered in pitch and tar because he was playing in the newly patched roads near the park? What do you say when your son is no where to be found and, after circling the neighborhood more times than you have fingers and toes to count with, going from door to door and not being able to reach anyone, you come back to find him sitting on the front steps? 

Avonte was non-verbal and up until seven years ago, so was Matthew. He would not have been able to call for help, to call for me, for his dad, or for his older brother. He would not have been able to alert anyone of our phone number or address with the hopes of us being notified.  My blood ran cold at that thought then. It's even colder as I write.

My heart is breaking as I think about this family weeping for their child. When you lose a child, there is very little (if any) consolation. A piece of you is forever gone and no matter what is done, regardless of how much time has passed, that piece can never be gotten back. Even the word closure is like salt in the wound.

Too many families, in and out of the autistic community, have lost their children in such a fashion. In some instances, there have been happy endings. Sadly, others are left with grief and memories as they lay their precious children to rest. 

I pray tonight for Avonte's family, that they will be wrapped in comfort and love. I pray for peace. I pray that no other family will ever know this kind of pain!

Sleep now, little soldier. Your journey is now done.
Sleep now, sweet angel boy. A valiant race you have run.

Grown Up New Year's Resolutions

A few minutes ago I was sorting through some notes I'd posted to my timeline on Facebook and I came across one from New Year's Eve 2010. With 2014 a mere three days away I thought I would brush the dust off of them and share them here. Like myself, they are a work in progress, growing and changing. With that I give you--

Twenty-some odd years ago, as the New Year was dawning, I remember sitting down with my pen and paper, feverishly sketching a list. Not just any list...THE list...a list that most of us make each New Year with the best of all intentions of seeing it through. While memory fails on each and every item on said list, I do remember it looking a little something like this:

1) Losing this excess weight

2) Meeting my financial obligations (which is a hoot now, considering I was unemployed then!)

3) Seeing all of my written works published

4) Meeting the "right" person and having a family (okay, I never actually put this on the list but it was implied.)

5) Finding a good (translation: a high-paying, work-too-many-hours, no time for God, family, self to the point of developing hypertension and possibly having a heart attack) job and being successful.

And the list went on....

I was 18 and  barely into  my first year of college when I made that list. I had the best intentions when it was made. We all want to move forward in life, to gain promotion, to be successful, with the approval of those around us. None of us want to struggle. We don't want the pain of being unfit, in debt, working a dead end job  because that's all that's available due to an uncertain economy and job market. We also don't want to be alone. We may say it with our words and to some degree show it in the way we conduct our daily lives but the truth of the matter is, we are not equipped to walk through this world by ourselves.  None of us want to be uncomfortable. I am no exception. Sadly, 23 years after writing this list, I found myself exactly where no one wants to be. It was a combination of the choices of others coupled with my own heartbreak and rebellion. As a result, my perspective has changed along with what I have come to see as truly important. With that, I offer my new list of resolutions for 2011; some "Grown-Up Resolutions" as it were.

1) I desire character above reputation. A reputation is the way you present yourself to the world. Character is who you are when no one but yourself and God is present.

2) I desire mercy, forgiveness, and compassion, keeping in mind that I myself stand in the need of these things daily.

3) I desire patience and humility in times when pride would like to rear its ugly head. 

4) I desire joy, peace, stability, and maturity. I have wasted 23 years of my life allowing my feelings to boss me around and determine the way my day was going to go. I have wasted 23 years of my life by not setting and maintaining healthy boundaries. I have wasted 23 years of my life letting my circumstances lead the way and in doing so steal my peace and my joy. I have wasted enough time being touchy, petty, mistrusting of people, and outright miserable. I no longer have my life in front of me as I did when I was 18. And I no longer have the time for wasting anymore time.

5) I desire a healthy, balanced relationship with myself. I am the one person in the world I can never get away from. And as mentioned before, I have wasted 23 years of my life comparing myself to others for a myriad of reasons; not being satisfied with the gifts God gave me, wishing I looked like Sister So-and-So, wishing I could sing, dance, etc. like this person over here. I have wasted so many years trying to change my hair like my favorite singer (Amy Grant's spiral perm), trying to change my body in unhealthy fashions (can anyone say "California Diet" along with "Slim Fast"?), trying to change my ways of speaking including not speaking at all because someone believes I talk too much and adopting the likes of others whether or not I may actually share these likes. I have finally come to the conclusion that I am who I am and as such, I am making peace with my hair, my mouth, and my thighs!

6) I desire to love people and to help people when and where that may be possible. Maybe through a smile, a look, a hug. Or maybe just a simple "I understand" when in all actuality I don't understand.  In short, I guess really all I want is to just make a difference!

Granted, this list is a work in progress (as am I) and I will probably have ample opportunity to add to it throughout this next year.  I still desire to be healthy, to manage my finances.  I still possess the desire to see at least one book in print.  There is still so much that I would like to see and do before my time here is through. Will I accomplish it all? Perhaps. What should matter is the things that are of true importance--such as what was listed--are what gets accomplished and that they are accomplished with a pure heart and proper motives.

Have a blessed  New Year!