HAPPY NEW YEAR!

Today is January 1, 2016. It is a day like any other day. The sun shines through my bedroom window, my birds twitter and flit with excitement and I sit at my desk collecting my thoughts, wondering what I will write about today. The truth is that today is unlike every other day of the year. It is the first day of January, the month that haunts me every year for the past eleven years. That is when the devastation and decline took a hold of me and my life.

It was January 26, 2005, when the man who had stood beside me for thirty years was mercilessly killed in a Metro Link collision. A man with the same first name as my sweet husband, Manuel, was seeking sympathy from his wife. His plan was to convince her that he had committed suicide. He securely locked his truck between the railroad tracks, stepped out and commenced pouring gasoline inside and outside of his vehicle creating a bomb with the ability of killing and maiming many passengers. The engineer was hurrying from station to station in the darkness of the predawn hour, unable to see the trap that lay ahead on the tracks. The truck blew up on contact with the fire lighting up the morning sky. My husband was burned and melted into his seat while listening to his favorite music while the killer ran away and mingled in the crowd that had formed to watch the chaos and destruction. That was the day that the life that was mine for so many years was gone in an instant. This new world that I walked through was void of color, happiness and purpose. I was thrown to my knees in despair.

There was always one thing that remained a constant in my life. That was caring for my son, Alex. My time was filled with Emergency Room visits, doctors’ appointments, and medical procedures. He was born with many chronic illnesses that required constant attention. His father’s death hit Alex hard. His health deteriorated quickly. There were soon PICC lines, G-Tube placements and feedings, stronger narcotics for the unyielding pain, a byproduct of the surgeries and then his memory loss and confusion. There are no words to explain what it is to watch your child waste away before your eyes. He broke loose from his worldly chains on January 11, 2008, to be with his dad. I went to his room to wake him for a doctor appointment and found him cold and blue. My attempts at CPR were futile. My heart broke into a million shards of glass that I would walk through for years to come.

My children, Max, my amazing son and Crystal, my beautiful daughter, were there supporting me every step of every day of finding who I was supposed to be. It took years of hard work and therapy to finally see a light peeking through the darkness giving me direction. It came in small, baby steps. I started this blog and realized how much I missed writing. That was the beginning. I wrote about me, about Alex, about medical issues. I was changing. My life was changing. I found some wonderful friends here who encouraged me along the way until I started to believe in myself again. Last year I founded a nonprofit Organization Making Change For Children to help children with complex medical issues and their devoted families in memory of my Alex. This new year of 2016, I resolve to make a difference in the lives of many by continuing to network, attend webinars, writing a new workbook for the families and launch a new pod cast. I see so much hope in this coming year.

I wish you all an amazing New Year with lots of Hope and many Miracles!

A Walk on the Beach

A Beautiful story about a mom learning how to help her autistic son.

Stay Quirky, my friends

He remembers the paths we walked last year, along the beach and across the cliff-top fields toward the seal rookery. I let him lead. We never get lost.

Each day, he speeds down the beach, twirling two rubber snakes in his hands. I stop trying to keep up, but instead hold back to see how far he will really get before he notices I’m not with him. He goes, and goes, and goes. Do I need to run? No, now he stops. He finds me with his eyes, far back along the beach. He turns back. He never comes all the way to me, but just enough so that we are close, walking on together again in the same direction.

my son is in this photo... my son is in this photo…

I spy a tiny speck of red and black crawling up the sand and I pick it up to show him. He labels it…

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Why I don’t Love You Like I Used to: Letters To My Husband

Love changes.

Raising Dystonia.

Letter 1

It used to drive me crazy. As newlyweds, unsolicited advice came from everywhere. People assumed that being married meant they were an expert on marriage and they were more than happy to lend their expertise. Almost all of it was unhelpful. There was, however, one exception.

We met them on our honeymoon and looking back the interaction felt oracular. As though they saw us and knew our future. We met them randomly while having a sunset cocktail. At the time I thought they were a sad little old married couple with terribly depressing advice. Actually, I am not sure if it was advice or rather a statement. Smiling sweetly at his wife of over 50 years he said to us, “I don’t care how much you think you love each other now just wait. You will look back one day and realize you don’t love each other like…

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