Our Moments in our autistic world.

I feel like I have been riding on a roller coaster, I’m sure most of you can relate. Recently, we had family come in from Pennsylvania and Virginia for my husband’s ceremony. Everything went beautifully, I felt more at peace placing my husband’s remains at this gorgeous national cemetery. Having friends and family around always makes things run a little smoother. And, I do feel it gave everyone some closure, including myself.

Now the one thing I was truly hoping for was for my youngest son, Nick, to truly enjoy meeting his family from out-of-town. I realize it was a lot for him to take in… new people, new sights, new scents. The experience was new for him. And then you add the dreary, rainy weather in the mix and you get a very unhappy camper. I know some may say, “Oh, the weather can’t possibly have anything to do with headaches or behavior changes…” But I am here to tell you, yes, it can and does with my son. He can literally feel a storm brewing hours before it actually hits our area, he paces feverishly around the house. Peering out of each and every window like he’s waiting for the storm of all storms to come, and then afterwards, the pounding headaches occur. He struggles so much in just dealing with the pain, it’s difficult for him to focus on anything else.

Each time I can see the mountain of frustration riddling his face. And as an autistic parent it can be extremely tough, because for him it’s hard to verbalize what’s going on. We’ve come a long way and I have discovered so, so much in these past few years since my husband passed away. It’s not a path I would pick even for my worst enemy; raising a child with a disability on one’s own. It’s not easy by any means.

But there is a gift … For me, there are days I see him, my son, I can actually see this beautiful young man staring back at me. There are days where he just comes up and kisses me on the cheek and hugs me, cooks with me, paints with me and those are the days I cherish more than anything else. Those are the days that offer hope to me, that tell me not to give up.

One thing I found truly encouraging when our family came down was how accepting everyone was, how each family member boldly offered their love to him. There was never a moment of insulting questions or offhanded remarks. Everyone seemed to understand that Nick has autism, that a sudden sound or common noise to us could trigger a meltdown for him.

Even though a union of acceptance surrounded us, my stress level was off the charts, only because I desperately wanted Nick to allow his grandmother one glance, one hug, maybe a few words like, I love you, but he was confined in the world of autism. Perhaps, in time and with the many changes I am including in our daily life, more progress will show.

So, in this blog, I want to address two things. One – Don’t ever give up on the ones you love and Two – don’t give up on the things you love. And in saying this, I have finally, after three long years, completed a novel, titled Memoirs of a Superhero. Yes, it is available on Amazon, and yes, I do plan on writing more, a lot more! ūüėČ

I truly believe there is a unique journey for all of us and I know some days can be somewhat challenging, believe me I know! But even in the darkest of nights there are always stars shining above us.

So please help spread the awareness. Help educate, support, encourage, and love families living and dealing with autism. One kind word or act of kindness toward them can go a long, long way!

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Happy Birthday, My Love

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Today the kids and I would’ve baked a cake, wrote notes about how much you mean to us and feel¬† blessed to have you in our life.

¬†Or, ordered a batch of Wonton soup and enjoyed each other’s laughter. Oh, how I wish I could go back in time…

We had so many wonderful memories together and that’s exactly what I am trying teach our son. To remember you, to hold onto the love you had for him and for our family. And as part of my steps going forward, I’m still reading Healthy Healing. There’s so much I’m struggling with and through it all I’m trying to find that courage, that get-up-and-go drive. Some days, it’s there pushing me to do what needs to be done and some days, I feel like I truly get what the heck this book means.

Here’s one of the best lines from the book:

“Loss teaches us to appreciate the moment, to love what matters, that life is less about stuff and more about experiences and memories. Loss teaches us that we have a finite amount of time to do all the things we’ve dreamed of doing. We love more deeply, and give more freely. Loss is perhaps the greatest teacher available to humankind, and as the survivor of loss, you too are now enlightened with the gifts of grief. While I wouldn’t wish my pain on my worst enemy, I would wish my perspective of life on the entire world.” Author Michelle Steinke-Baumgard.¬†

I think the greatest gift was having my husband in my life, he had such a drive for life, to change things, to raise the bar just a little bit higher, always wanting to improve. And he did just that, he touched so many lives and I know he would want his children and I to carry onward loving life the same way he did.

While reading through the chapters, I could not grasp the notion that death, his death- my grief, would ever be seen as a gift.¬† But now, after reading, after taking some time to really look at it from all the different angles, I get it. Chris would have wanted me to fulfill all my dreams and hopes, he would want me to laugh, to smile, to cherish everything that is in my life. So, I know he’s not here with me to blow out the candles for his birthday, nor is he here to sit across the table and smile while we ate Wonton soup together…

But, he is here in my heart and soul cheering us onward. Happy birthday, My Love!

 

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The Journey continues…

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Well, how was your holidays? Fulfilling? Chaotic? Maybe even remarkable? I had everything I could ever want right under one roof, my family. I adore having my kids around, cooking for them, watching movies, playing games, but there was one thing I truly wished I had… my husband.

 

I keep thinking as the days pass it’s going to get easier, but once the holidays transpired, my heart grew heavy with grief. So many memories cling to me like a ghost haunting an empty house. And, maybe my grief sprouts more because I compare my boyfriend to him. Some may say it was way too soon to jump into a new relationship.

Maybe.

But, nonetheless here I am. My youngest son, Nick, totally enjoys their time together and seeing him smile and laugh again gives me hope. Children living with autism (from my experience) are so hard to connect with sometimes. They’re usually in their own world and completely happy being fixated in that world. So, when I say I’m given hope every time I see my son laugh or joke with that twinkle in his eyes, I become so determined. Determined you may ask? What do you mean?

As of right now, I am currently reading two books Cure Your Child With Food by Kelly Dorfman and Healthy Healing by Michelle Steinke- Baumgard. I’ve researched a lot over the years and knowing certain things can trigger a slew of unwanted behaviors in our children, one of which I recently came across was artificial food dyes. Oh yes, the wonderful dyes, any color including red No. 40, red No. 3, yellow No. 5, yellow No. 6, green No. 3, and even the blue No 1, blue No. 2.¬† I talked with our private physician and he agreed to remove all of them out of our diet. Easy? It was a little time consuming, but once you get the hang of it, which we did, I saw such a big difference in my son.¬† Small steps. And that’s what this piece is about, to hear my son tell me good morning, maybe even a hug and then, he goes on about his day, makes me one happy mother! Just that, two words or one simple act of kindness. So, every day I strive to learn and focus on what’s important.

While on this journey of mine, my best friend recommended a book to me, Healthy Healing, I had mentioned it above. And as I was reading, the author tells you her story, her story about how she lost her husband. The entire time I’m reading I keep whispering to myself, don’t cry, don’t let the words I’m reading affect me, keep it together!

 

But I just couldn’t do it. Tears flooded and my heart breaks for her, I can relate to pretty much everything she’s experienced. Her story is told with a disheartening beauty, simply because you know she loses someone she loves. In a passage she states, basically, “you purchased this book because you’re looking for strength and hope.” I am and since the holidays have faded into another year without him, I have started to truly wonder what my purpose is, what is my “thing?”¬†Which is what the author calls it in her book.

 

So, in part of the healing experience, perhaps this will help, and hopefully, I can do this in one sitting and tell you my story…

I had been working on a story titled Midnight (some of you may know what I’m talking about), my goal was to make it the second installment to a previous book I had written. I had been locked away that day, typing as fast as my fingers would allow, totally absorbed in the story when my husband had come in with dinner. He always made dinner before he went to work and just like any other evening he sat beside me and listened to what I had written for the day. And as usual, he would ask questions, offer ideas and listen to the music I would play while I wrote.

I remember him laughing at a particular scene and for a moment I felt like time stood still for us. He was so easy to talk to, it was effortless to love him. If I had become unsure about how a character or how a scene should play out, he would always talk me through it. And in doing so he built up a confidence in me that encouraged me to march onward.

Before he changed clothes, he played with our youngest son, tickling him with the scruff of his beard. The room filled with giggles and laughs and then he leaned over and kissed me goodbye, little did I know it would be our last kiss.

On August 12, 2015 Chris left for work, as usual he wrote his first email of the night to me letting me know he made it okay.

Sent: Wednesday, August 12, 2015 7:03 PM
Subject: Hi Darlin
Hello Darlin,
I made it here, but if I start feeling bad I might come home early, it just depends on how I feel. So far, so good.
I sure do love your writing and you have mad skills with your story. I love every drop of it and can’t wait to read more.
I miss you
I replied back, he hadn’t felt good and it always made me anxious. He emailed me about five more times and we conversed throughout the night. At 2:45 I started receiving phone calls, Chris had left work and about a couple of blocks away he turned around and headed back to the job site. As soon as he parked the car he told one of the security guards there he was having trouble breathing. He took a few moments asking the guard to stay with him. And as they looked up Chris commented about the Perseids meteor shower, it was the last thing he saw before he passed away.
Shortly after I arrived at the hospital and I remember waiting in the emergency room alone. I held onto hope, thinking maybe now, we will know what was making him feel so bad. I sat and watched life flight leave, readying myself to soon follow, because in my heart I just knew he would be okay. He was going to be fine, I must have said those words over and over a thousand times inside my head.
But no one came to tell me that, instead the hospital security ushered me into a side room. It was small, plain and isolated. Still I carried no doubt in my mind, I anxiously waited for someone, a doctor, a nurse to tell me he was in surgery or something. But, once the room filled up with nurses and the same security guards, my heart started to beat a little faster. A tall, slender woman walked in, a stethoscope dangled around her shoulders, she knelt down beside me and that’s when I saw the tears in her eyes.
She spoke softly, and told me my husband had passed away, they did everything they possibly could. And as she delivered her words I felt so detached. Like it wasn’t me sitting there, it wasn’t me hearing what was being said. I remember a pile of tissues were handed to me, but I couldn’t feel the tears that streamed down my face.
From that point on, it felt like an out-of-body experience was happening to me, I was asked to see him and I said no. I wanted to remember him when he was getting ready for work that night. Full of life, smiling, I didn’t want to change that image of him. With numb hands I held the last of his things, his shoes, belt, his watch I had got him for Christmas that year, and his wedding ring.
When it came time, I was escorted back into the emergency waiting room, and still there wasn’t a soul in there. It was so quiet I could hear the creak of the chair as I sat down. One of the hospital security guards came over, asked if he could sit with me while I waited for the sheriff’s deputy to come pick me up. We sat in silence for a few minutes, and then he said, you’re going to be okay. My thoughts inside couldn’t imagine how I would ever be okay. He went on to tell me that he had also lost someone dear to him, his wife several years ago, he raised his children and eventually met someone new.
I tried so hard to be polite, tried to appear like I was listening to his story, but the very thought of moving on without Chris was unbearable. Unimaginable. I thought how could anyone say this to me? I clung to his things even harder and practically ran to the deputy’s truck when I saw it drive up. I watched the streets pass by not really hearing a word the deputy was saying, I felt as if my heart had been shattered into a million pieces. My mind scattered into various thoughts, all flooding me at once.
Once I arrived back home, I made sure my tears were gone and I told myself to be strong for my children. The rest of the early morning was a blinding blur of phone calls and deciding on different factors. One of which was making the decision of him being a donor, my middle son and I decided together. My husband was able to help three other lives that night.
My life, our life had been washed away by a tide I never saw coming. I learned that everyone handles grief differently, I also grew more appreciation for the little things in life. It’s been two years, five months and twenty-five days since I last saw his face, kissed his lips and felt his embrace. I have kept everything he has written, even his last emails, and this was the last thing he wrote before I received the call.
I love you and will be home shortly.