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!


lI read this article this morning that truly struck me.  The author, Anet, wrote about being a patient and a self-advocate at the same time.  All of the feelings that I felt during those years of trying to save my son’s life came rushing back.  In fact, I feel the heat in my face and the pain in my heart as if it was happening today.   Unlike Anet I did have medical licenses and titles, but that means little to nothing when you are a mother fighting for her child.

Physicians, nurses and techs dismiss the patient (or patient’s parent) as an uninformed, uneducated, and excitable person with an illness who is in need of someone to tell them what to do.  They become paternalistic, whether man or woman, and are sure that they know what you should do and how you should do it.  It is my belief that as the patient, or the mother of the patient, it would not be so crazy to think that I would know a little bit more about what is happening, with or without a degree.

Anet speaks about being a part of a group that would include patients and clinicians giving their input about this or that medical problem.  When the article eventually comes out, there is minimal writings about their ideas.  It makes me wonder how they can call this group of people a team.  For one thing, they rarely communicate with each other.  For another, they are demeaning, abrupt and, at times, cold to the most important person on the TEAM, the patient!

I believe it is the right for every patient, and family of a patient with a chronic illness, to be armed with all of the knowledge necessary about the illness(es) that they are living with including symptoms, options, medicines, ‘red flags’ to watch for, important labs to be aware of and how to keep all of the information organized.  They should not be responsible to find this on their own.  I would propose that a licensed healthcare provider give them the tools that are necessary to educate, support and empower them to be the best advocates that they can be.

I learned this through the difficult road that my son and I traveled from the day he was born until the day he breathed his last breath.  But that was not my only education on this matter.  As a Physician Assistant I worked in Hepatology  and was assigned to all of the patients with Hepatitis C on treatment.  At that time, a few years ago, the treatment was a long and difficult.  The medications had many side effects that both the patient and I had to be aware of.  I gave classes that started out with training them to give themselves injections.  After that was mastered, we would go on to  talk about the side-effects, when it was an emergency or it was something that could cared for at home.  I gave them each a book to keep a diary of their feelings, food intake, new and old symptoms, medicines, Red Flag symptoms, labs, and a glossary  in the back.  We became a real team.  They were as involved as I was.

This is what I want to do through my new nonprofit Making Change For Children in honor of my son.  I want to make a difference in these patients and their parents lives.  We need to give them some control over their illnesses.

Go to:  http://yourgoldwatch.blogspot.com/2015/08/the-authentic-patient-voice.htm


I feel so out of the loop.  I suppose when the Disneyland disaster with the children acquiring measles was going on, my mind just didn’t grasp what was happening.  Don’t get me wrong.  I understood that there has been an ‘anti-vaccine’ mentality in large groups of concerned parents here in the United States.  But I never truly thought it through deeply enough to realize that these children were going to school without their mandatory vaccinations.  What?  How?  When my children started school at the age of five, I would have to hand in their proof of immunizations before they were able to go to class.  There were no exceptions.  Now, it is my understanding that there is a new law that allows parents to opt out of vaccinations through a personal belief exemption.

Things have changed in the last three decades.  I know, I know.  That’s for another day.  Anyway, I have not been blind to the increased number of children who are diagnosed as being at one stage of a long and complicated Autism Spectrum Disorder.  All of you know that I fight everyday for all children with chronic diseases and their families, and it is no different for the little ones with autism.  For years we have heard hundreds of theories for the cause of Autism, some sound logical and others sound insane.  I know that, if it was me, I would fly to the moon and back to never do any harm to my child.  Believe me, when a mother is faced with so many decisions about surgeries, procedures, and medications that are known to cause death, that mom is most careful before signing on the dotted line.  When I was making those choices for my little boy, there was not any fear of hurting anyone else’s child.  It would be my family, friends, his friends and our world that would feel the repercussions from my call.

This morning I read this article and it made so much sense.  It would behoove all parents to take a look at this parent’s take on this ‘life and death’ situation  before you make your final decision about whether or not to immunize your precious ones.  Go to:  http://ww2.kqed.org/stateofhealth/2015/06/23/boy-leukemia-patient-weighs-in-as-vote-on-vaccine-bill-nears/

After you have read this article, I found this TED talk by Steve Silberman who speaks about the history of autism.  Here:  http://www.ted.com/talks/steve_silberman_the_forgotten_history_of_autism