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!

…and sometimes a smile is all that we need #1000speak #Compassion – Guest Post

Maybe you could be a mom’s angel today.

Taking it a Step at a Time

Compassion comes in many forms and at times just the smallest thing – a glance or a smile can mean more than the grand gesture.

I was away and not able to participate in the May 20th #1000speak and due to some unplanned/unforeseen issues going on at the moment, I thought I wouldn’t have the opportunity to participate this time around…..

Then I saw this post from a friend of mine and it made me smile. It made me smile each and every time I read it and on a day when I really needed a smile.

It always seems to be those little things, the things that no one thinks about – that no one else might even notice that can just make your whole day brighter.

Below is a post from my friend, Radec. Her son, Calin has autism, like DC, but he is much younger.  When we are used to and dread…

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WHAT WOULD YOU DO?

I came across this video that I want to share with all of you.  It is about a rare disease and how difficult it is to find funding for research on the disease, find medications that could help these children, much less figure out to care for these sweet children, that is if, and when, they finally get diagnosed.  I have mentioned before that it takes an average of eight years for a child to be correctly diagnosed.    Are you wondering why there is no funding for research, no pharmaceuticals that want to find helpful drugs for children with this disease.  The answer is, money.  Why should they spend all of that money to research, or find a great medicine (possibly a cure) on a rare disease that maybe a handful of children will be born with each year in the United States?

There is no amount of money that could take the place of one child.  Each child on this earth deserves a timely diagnosis, Doctors and scientists who want to research the disease and a Pharma who will find them some help.  Most rare diseases are ones that children are born with.  Our children are not second-rate, they are our future.  How dare anyone stamp a dollar sign on their foreheads?

Ok.  My rant is over.  Please watch it entirely.

http://wtnh.com/2015/06/10/celebs-rally-behind-social-media-campaign-for-little-girls-with-rare-brain-disorder/

If anyone is interested in what has been going on in terms of research, here is an article that my cousin sent me on this subject.

http://www.likecells.com/article/33/