A Powerful Life and Legacy

As we continue to grieve the passing of our beloved son Nicholas, we have also been reflecting on the great memories built together and the powerful life lessons he taught us. Those lessons are real treasures that I want to share with you today, but first allow me to share a little bit about this amazing soul. Nick was only two years old when we found out that he had a very rare condition, Primordial Dwarfism Type II, which is so rare that there are currently less than 100 people in the world that suffer from it.

The doctors predicted that our beautiful little boy, as most kids with this condition, would not live past 13 years of age. How both my ex-husband and I reacted to that news and what each of us decided to do moving forward was very beneficial for Nick. While his father focused on researching Nick’s condition and taking him to see any and every doctor he thought could help change those odds, I focused on filling Nick with love and making his life as happy as possible for as long as God would allow us to have him. That turned out to be the best combination, as it helped us keep Nick with us longer (he passed away just a few days shy of his 25th birthday) and helped him have a life truly worth living.

We were thrilled when Nick passed the age of 13, healthy and happy. We hoped that perhaps those doctors had been mistaken, but in the years that followed, he experienced more life-threatening issues like ruptured aneurysms, heart attacks, and open heart surgery. In total, he went through 14 major surgeries in his life and had multiple medical procedures that kept reminding us how fragile his body was and how quickly we could lose him. However, every time we thought the end was near, he would miraculously push forward to get well again.

Nick went up into spirit almost a month ago, during the happiest time of his life. He was healthy, had managed (against my wishes) to move out of the house last year to live in a place for young people with special needs where he had friends and plenty of activities, and he was also enjoying his part-time job at a manufacturing company. He was also in love with Amanda, his girlfriend of almost two years, and was happy to have traveled through Europe again last summer, also spending a week visiting his best friend Brad in Illinois, and another week with his cousins in Oklahoma. He was always so happy to come home to spend time with us, but especially with those he referred to as “the two people he loved the most in the world,” his siblings Catalina and Santiago.

The way Nick chose to live his life and confront both his physical limitations and medical complexities made him an amazing teacher. This little Zen master left us many lessons, of which I would like to share the three I consider most important with all of you, with the hope that they may serve you as a source of inspiration.

Nick taught us that one must fully embrace whatever situation the Universe sends their way with complete humility and acceptance. For Nick, everything was perfect. He never complained to God, his parents, or anyone about his size, condition, limitations, or for having so many health issues. He had all the reasons to complain, but we never heard a, “why is this happening to me” or “why do I have to be in the hospital again”. No matter what curveball was thrown his way, he accepted all he had to endure with remarkable peace, serenity and positivity.

The second lesson is that one must give 100% attention to the task at hand, and truly enjoy the present. I don’t know if Nick was like this because he knew his life wasn’t going to be long or because his soul was way more elevated than ours, but he truly knew how to enjoy everything to the fullest. When he spoke with anyone, he wasn’t looking at his cell phone, or thinking about what he needed to do next; he was 100% focused on you. When he spoke on the phone with his girlfriend or with his best friend Brad, with whom he spoke almost every day and sometimes for hours, he was there for as long as the other person wanted to talk. Brad told us that one time when they were talking he became hungry and told Nick he was going to make himself a sandwich. After Brad made and ate it, he came back to the phone and Nick was still there waiting for him because they had not yet said good bye.

The third of Nick’s life lessons is that one must look for and enjoy the simplest things life has to offer. Nick truly enjoyed a sunny day, a sunset, or a beautiful flower. He enjoyed a good song, a good message, a good conversation, or flavorful food like tacos and Colombian arepas. Nick was someone with the financial resources to buy, eat or go wherever he wanted, but instead of material possessions, he enjoyed people, memorable moments, and nature much more. For example, the Monday before his passing he spent the day outside listening to music and his audiobooks. Nick didn’t work that day, so I decided to work from my home office to be near him. I went out to check on him once in a while and on one of those occasions he said, “Mommy, it is such a beautiful day, you should just work outside. I’ve been outside for over six hours and love it; I even ate breakfast outside today.”

So, as a way to honor Nick’s life, I invite you to take those three simple but powerful lessons with you. Accept in your heart all circumstances in your life, so that you can find real happiness. Stay present in your lives, so that nothing and no one passes you by without fully living in those moments. Finally, enjoy the simple things in life. The things that cost you nothing but are worth everything, like the moments lived with your loved ones and those moments you spend in communion with nature. All I have to say is that it was truly a privilege to be his mother.

Warmest regards,

Toti

49 replies
  1. Marcela
    Marcela says:

    Que hermoso tributo para tu Nick!
    Yo tambien tengo un nino Nick le decimos (MiNick), hablare con el y le dire de tu mensaje. Gracias por compartir y gracias Nick por tu inspiracion!
    un abrazo.

    Reply
  2. Angelica Fox
    Angelica Fox says:

    Thank you for sharing this with us. A beatiful memory that inspire us to embrace any challenges of the universe and accept them. You are a beautiful soul too.

    Reply
    • Admin
      Admin says:

      Thanks so much, Angelica. His resilience was so strong that it continues to inspire us into accepting and moving forward no matter what. Un abrazo!!

      Reply
  3. Guillermo Vidal
    Guillermo Vidal says:

    I am glad I got to meet Nick. All of us were at a Rockies game which he really enjoyed. He was a beautiful and gentle soul.

    Reply
  4. Anita Wesley
    Anita Wesley says:

    Toti-
    Thank you for sharing your message of grace, courage and purpose during this sad time. Nick’s gifts to this world continue in the legacy that all who loved him.
    Blessings to you and your family.
    Anita

    Reply
  5. Susan Rothfuss
    Susan Rothfuss says:

    When I hear of a soul like Nick having another like you, Toti!, I know the Universe has no accidents. Your deep respect for his wisdom is a loving tribute to him and inspiration inspiration for me.

    Reply
    • Admin
      Admin says:

      Susan, thank you so much for those beautiful words. Nick has been and will forever be my wisest and most transformational teacher. Thank you and many blessings!

      Reply
  6. Maria
    Maria says:

    Nick was a truly enlightened Being: a Bodhisattva. As seen by your Blessed life, dear Toti. I met Nick just once in your beautiful home. He was getting ready to head to Chicago to be with and support hos friend. What a true Master he was. Thinking of you all. With deep gratitude and love

    Reply
  7. Giselle Bueno
    Giselle Bueno says:

    Seguí de cerca la vida de tu hijo y estas palabras me conmueven mucho, yo perdí una sobrina de 13 años con una rara enfermedad degenerativa y un médico nos dijo que algunas personas llegaban a nuestras vidas por un corto tiempo pero nos dejarían grandes legados y enseñanzas y otras viven muchos años y no nos dejan nada, fuimos bendecidos con estos angelitos que nos enseñaron muchas cosas y su recuerdo nos lleva a ser mejores personas, Dios te bendiga y te de mucha fortaleza para superar el dolor de no tenerlo de nuevo

    Reply
    • Admin
      Admin says:

      Ay Giselle, cuanto siento lo de tu sobrinita. Grandes legados y enseñanzas de estos angelitos. Bendiciones y abrazos para ti y tu familia!

      Reply
  8. Aimee
    Aimee says:

    Toti, I love that you see him as a “little” Zen master. He is so alive, I just feel it in your words. Thank you for sharing and passing Nick’s lesson to all of us. Un gran abrazo.

    Reply
    • Admin
      Admin says:

      Gracias mil Aimee!! Nick will forever live in our hearts, minds and in the way we honor him by living our lives in the ways he taught us. Un abrazo amiga!!

      Reply
  9. Any Cucalón
    Any Cucalón says:

    Hermoso Toti!! Aceptación, humildad y gratitud…bellos valores para mirar la vida y las dificultades con mayor resiliencia. Tu hijo fue un gran maestro!

    Reply
  10. Cindy
    Cindy says:

    Dear Toti,

    You have always been an inspiration to me, but I admire you in so many more ways after reading this. I had no idea that you had gone through this and I’m in awe of your strength and grace in sharing your story. Thank you for the reminder of nature’s ever changing presence in our lives. My thoughts and love are with you.

    Cindy Kent

    Reply
    • Admin
      Admin says:

      Thank you, Cindy, so much!! Being Nick’s mama transformed me in so many ways. Strength and grace were two of the things he exemplify. He made everything look so easy, when we all knew it wasn’t. Much love sent your way!

      Reply
  11. Amelia De Jesus
    Amelia De Jesus says:

    First Toti, I am sorry for your lost but at the same time and happy for you for you are a real warrior at heart. You mirror and emulate the 3 steps of advice that you render. I fully support you and the advice you give for I live by those 3 Simple but not so simple lessons of life.
    Not simple but are the answers to living. Toti, I see that you have not changed since I met you and respect you more today than yesterday but less than tomorrow. I pray that the blessings of God let you continue to live life in sheer Health and Happiness (but I am going to pray that He put in a little Wealth there so you can enjoy life with Health and Happiness even more).

    From my heart to yours, Love You Very Much and distance nor time will or can ever change that.

    Amelia

    Reply
    • Admin
      Admin says:

      Amelia querida, you know that I have the upmost respect for you and the way you teach all of us to live life. You and Nick truly live life to the fullest against all adversity and that makes all of us appreciate life and all that is given to us even more. Much love and admiration for who you are and what you do. Love you!

      Reply
  12. Pam Culley-McCullough
    Pam Culley-McCullough says:

    Dear Toti,
    I’m so moved by what you shared about Nick and his amazing life. He was a Zen master extraordinaire with his words of wisdom. I’ve printed a copy of your message to remind me each day of what is most important. Yet, I can’t help but believe that he couldn’t have been all of who he was without you and your family’s support and love. What a teacher he has been. And now that he has passed, I see him dancing! Blessings to you and your family.

    Reply
    • Admin
      Admin says:

      Pam, that is exactly how I want to imagine him, happy, singing and dancing. I think all of this was a team effort, but Nick was our biggest inspiration and greatest teacher. He was just a very advanced soul. Light and blessings, dear friend.

      Reply
  13. Tara Petersen
    Tara Petersen says:

    Toti,

    I stayed up late reading this last night because it was exactly what I needed to hear at exactly the right time. Thank you so much for sharing your journey with all of us in such a raw and honest way. As a mother myself I cannot imagine losing a child, but I would only hope that I would honor my child’s legacy in half the incredible way that you have. Thank you!

    Reply
    • Admin
      Admin says:

      Thank you for your beautiful words, Tara! The biggest gain we had from overcoming so many difficult moments with Nick, is the wisdom of the lessons we gain. It is very inspiring to see that Nick is still touching lives. Keep those lessons handy. Many blessings!

      Reply
  14. Thomas Van De Bogart
    Thomas Van De Bogart says:

    Thanks for making my day Toti — I didn’t know Nick personally but he’s had a positive impact on my life, and certainly his story has inspired my day.

    Reply
    • Admin
      Admin says:

      You are making my day by letting me know that Nick has inspired you too. Thank you so much! Sending you a big and grateful hug!

      Reply
  15. Linda Kanamine
    Linda Kanamine says:

    Toti,
    That was a beautifully written, heartfelt message to us all. While I’m so sorry for your pain, I can’t help but be joyful for the sunshine Nick brought into your and your family’s lives – that’ll last forever!

    Best,
    Linda Kanamie

    Reply
    • Admin
      Admin says:

      Thanks so much, Linda. Holding on to all the wonderful moments we had together is exactly what I am trying to hold on to as we learn to live with his absence. Nick was always the best dose of sunshine. Light and blessings!

      Reply
  16. Leah van Zelm
    Leah van Zelm says:

    Thank you for sharing these lessons. Only the good die young – those individuals that I have known that have been taken much too early, are the individuals who have the most to share with the rest of us. So sorry for your pain at this time, and so happy for you having the opportunity to love and be loved by your son. Many well wishes, good thoughts, hugs, thank you’s, and condolences.

    Reply
    • Admin
      Admin says:

      Leah, Thank you so much for your sweet message. Yes, old souls full of wisdom tend to come to share their wisdom and unfortunately leave us way to early. We miss him dearly, but were blessed to have him all these years. I send you a big hug!

      Reply
  17. Lilia Shoshanna Rae
    Lilia Shoshanna Rae says:

    Toti – This story of your son is so inspiring. I was sad for you when I heard of his birth into spirit. Thank you for sharing his wisdom and the light he shined during his short yet meaningful life. He has left a legacy.

    Reply
    • Admin
      Admin says:

      Thanks Lilia! Nick was and will continue to be our most amazing teacher. One could only aspire to leave such legacy. Thank you! Light and blessings!

      Reply
  18. Susanne Romo
    Susanne Romo says:

    Toti, I did not know your son had passed. My thoughts and prayers are with you and your family.

    Your blog post is beautifully written and a beautiful testament to the joy your son not only had in his life, but brought to others.

    Reply
    • Admin
      Admin says:

      Thanks much, Susanne! Nick was amazing. He was even called “the little zen master” for the wisdom he shared. We were blessed. Big hugs sent your way!

      Reply
  19. Steve Saunders
    Steve Saunders says:

    Thank you so much for this.
    I read it twice and will keep it close at hand.
    Sometimes I/we get overwhelmed by the little stuff and I/we need to step back and size things up for what they really are.
    Every time I was around you two I could sense the love that you two shared.
    Glad you were able to put into words what you are feeling and help others.

    Reply
    • Admin
      Admin says:

      Thank you so much, Steve!! Our little guy was an incredible soul and one full of wisdom. My hope was to share a little of his wisdom with all of you, and it fills my heart with happiness to know that you were inspired by him as well. Blessings!

      Reply
  20. Elizabeth Suarez
    Elizabeth Suarez says:

    Que tributo mas bello para tu hijo. Siempre me acuerdo como el me daba toda la atencion del mundo cuando hablaba conmigo. Actuaba como si lo que yo decia era lo mas importante. Todos podemos aprender de el. Gracias por compartir tu hijo con todos nosotros.
    Un abrazo.

    Reply
    • Admin
      Admin says:

      Gracias Eli! Gracias por ese bello recuerdo. Si, Nick nos deja mucho que aprender sobre como deberíamos vivir la vida nosotros también. Gracias por haber sido tan especial con él. Un abrazo!

      Reply

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