Tuesday, January 15, 2013

As A New Year Begins


Reminiscing on Deirdre's life, acknowledging that our lives were changed forever for the better. Deirdre brought the best in all of us, and she will keep on making things happen. We know it.

From the beginning me and my husband understood that there was no space for pity or for helplessness. Deirdre needed tools and actions, and so we tried our best to comply. We love her for all she is, for all her accomplishments, for all her dreams. She did not let anything stop her. She dreamed big. She worked hard, so she could have the "privilege" of partying hard. She saw and experienced the world. We are always very proud of everything she did and everything she is doing right now... because we know that as an angel she keeps on being very busy.

Thinking about all that Deirdre inspired, I wrote this in my personal professional blog... Nothing but the truth.

2012


"This year marks big changes in my life. The focus was basically a big lesson on how life should be lived to the fullest, and about the simple fact that if you want to do something just do it. Some people may see that for the past 5 years I vanished from the workforce, but the reality is plain opposite. For 5 years I ran the most important entity that I will ever know, Deirdre Medina. I was in charge of all administrative duties and well as services and public relations. Deirdre demanded a caregiver and an advocate that had an iron fist for “business matters”, as well as a compassionate spirit. This has been the most challenging job that I have mastered… a job with many hats, unpaid in monetary terms, with high stress 24/7, and where all decisions were life or death matters (literally).

As administrator I had to run a sound finances and accounting department so all of Deirdre’s needs were met. Therapists, therapies, equipment, medicines, doctors, and nurses where part of the daily activities and daily expenses. Deirdre needed specific care, and supervision of her physical and mental health was a daunting task. I had to become Deirdre’s R&D team so I could find answers to her daily dilemmas… answers that normal service providers would not give. And so her challenges inspired answers that helped other families with kids in her situation. I researched every single day for 5 years. I looked for answers as professionals gave us the cold shoulder… and got them. Creating and maintaining Deirdre’s website we raised awareness about her illness, guided new families, gathered funds for her needs, and promoted all the important events of her life.

Thanks to Deirdre Medina  I have been web designer, graphic designer, marketing team, research and development, assistive technology professional, event coordinator, accounting/finance department, human resources department, physical therapist, alternative medicine practitioner, occupational therapist, special needs advocate, special education advocate, special needs media specialist. And underneath all this, I was also honored to be her mother.

It has been the most demanding, hard job that I have ever done. I never even imagined I would learn so much, and put into practice so many things I learned from co-workers and friends. I never imagined that my knowledge in Information Systems would be the main tool that would facilitate my daughter’s learning and daily life. Thanks to technology she was able to have a voice via an eye-gaze system. Thanks to technology she could play with a toy even if she could only barely move a finger… activating it via movement detection sensor. Thanks to technology she enjoyed books, and she aspired to become an animation artist. Helping her I learned so many possibilities for special needs kids! She gave me the biggest gift in my life, she showed me how to love technology because of what it can do within a positive environment.

2012 was the end of my world, I lost Deirdre. But I see her alive in my finding out how to reach others and teach them all I have learned… Running the Deirdre Medina empire assured me that I can do anything when I put my mind to it, and that without sacrifice there is truly no glory. Sacrifice, hardships… challenges that develop your character… experiences that make you grow. Things are different in every way. 

I hope that 2013 is the year where the command of “just do it” comes true. I’ll keep dreaming my diva’s dreams (Deirdre was known as Deedee the diva), and I’ll use all within my power to make them all happen. True happiness comes when you help others with your heart in your open hands. I look forward to becoming a media specialist and keep on gaining knowledge in AT and special ed. I also look forward to creating Deirdre Medina’s Foundation… for helping SMA kids who are abandoned in hospitals, and to raise awareness about SMA… But that is another story…

Right now 2012′s last days are bittersweet, as it is the time to enjoy my homeland as I am getting ready for a new journey. Florida, here we come! May Deirdre guide my path, and smile from Heaven… as I look for my destiny."

From Vivian Rivera: Artiste & Techie, "2012"