Welcome to my site! Here’s where you can learn a little about me, about Moriah, and why I’m passionate about advocating for people with special needs.
5 Fun Facts About Me
I was born May 11, 1984 in Singapore. I grew up in Southern California, and spent my childhood summers between Malaysia and England. I am half Indian-Punjabi, and half English.
I met my husband, Justin, in 7th grade. His locker was next to mine. We started dating in 10th grade. We went to college together at the University of Colorado at Boulder (Go Buffs!), and got married at 21 years old. He’s the love of my life to this day.
I watch re-runs of The Office every single night, and it never gets old
I love everything about Christmas and I watch Home Alone 1 & 2 several times a year. My dream is to go to New York during Christmas time one day.
I love to travel and experience different cultures. My top 3 places to visit in the world are South Africa, Bali, and the Czech Republic. Yet there are still so many places I can’t wait to explore!
Moriah was born January 23, 2008. We knew she was going to be born with a heart defect, and the NICU team was there, ready to intubate her. Soon after her open heart surgery at 5 days old, we learned that she had something called CHARGE Syndrome, a rare and medically-complex syndrome.
From day one, life with Moriah was challenging, scary, and difficult, but it was also incredibly rich, inspiring, and profound. Moriah had several challenges with eating, breathing, hearing, learning, and physically moving. As her mom, I looked past all the cords and tubes coming out of her. I looked past all the diagnoses that were being given to me on a daily basis. And I looked right into the eyes of my precious daughter, who I loved with my whole heart…the beautiful soul who God blessed me with. She was so full of life and love. I was smitten…and scared of all the medical needs and unknowns…and clung to God, which is the only thing I knew how to do. I felt God carrying both me and Moriah through all of it.
After a life-saving open-heart surgery at 10 months old, we navigated living in the hospital for one year, and a sub-acute facility for another year. And as Moriah grew stronger, we could see her spunky personality come through. We noticed she had her own way of communicating if you took time to watch her, and learn her movements. When we were finally able to take her home, we couldn’t wait…even though she was coming home with a trach and ventilator, oxygen, feeding tubes and pumps, medicines, therapy equipment, and a team of home Nurses!
Moriah finally started getting strong enough to regularly go out into the world (she was rather immune-compromised), and she began attending school with her Nurse. Moriah absolutely loved it, and loved being with friends. She enjoyed playing, singing songs, and learned to walk with a walker to her favorite destination, the garden. Her face would absolutely light up doing these things! She loved being out and about, and around other children. We went on to have more kids of our own, Jadon and Olivia, and they became some of Moriah’s best friends. They loved each other, and had a special sibling bond.
When Moriah was just shy of turning 7 years old, she got an infection. I thought it was just like all the other infections and that she would fight it as she usually did. But this time, the infection went to her heart, and she had to be hospitalized. Moriah passed away on December 1, 2014 with me and Justin by her side. Her body became too tired to fight. There’s not a day that goes by that I don’t think of her, and miss her. We all do. She was a huge presence in our lives, and in those of the people around us. And I, of course, wish she was still here, right now. But, I hold onto the hope knowing that I will see her again in Heaven…
And I also hold onto everything that she taught me. The name, Moriah, means “God will provide”, and “God is my teacher.” Well, boy, did God teach me a lot through her (this feels like a major understatement). First of all, she brought me into a world that I was never really aware of until I had her. My eyes were opened to the incredible determination and vibrancy that Moriah and her friends lived each day with, despite the many challenges they faced. They were so strong and brave. I was not only humbled, but inspired. There was also a beautiful freedom and innocence that my daughter lived her life with, along with a wisdom that could only come from life experience. Moriah could just look at you, and it felt like she was looking right into your soul. She taught me how to really see someone on the inside.
I wrote this on the one year anniversary of her passing.
“Today I stop everything, and remember my sweet, precious Moriah. From the moment she was born, she taught me about love. She taught me not only how to love her, but to love others. Justin and I couldn’t help, but look beyond ourselves, into the world she brought us. Whether it was the friend in the bedside next to her, her Nurse, her Doctor, her Therapist…she showed us how to see beyond the surface. Moriah taught us that there was so much more beyond words, beyond looks, beyond what is “normal,” beyond what is expected, beyond what is in our control. She showed us how to love well, and how to love deeply…to look into someone’s eyes, and see that they are beautiful, and see their value. Her spirit was unbreakable. Her joy was contagious. Her faith was immeasurable. I thank God everyday for her, my blessing, my gift. I am honored to be her mother. And thanks to a good and faithful God, I have the peace of knowing that I will see her again…”
Why I Do What I Do
While we saw so much goodness that came from people during our time with Moriah, we saw that there was still so much room to grow as a society in the way we see and value people with special and medical needs. I saw that not everyone saw Moriah for who she was, nor valued her the way she should have been. Because she didn’t speak, she was often ignored. Because she looked different, I was asked “What’s wrong with her?” (in front of her, might I add). Because I knew of her heart defect in utero, I was asked why didn’t I abort her? When questioning why there weren’t certain medical programs, I was made aware that some people would rather put the funds towards children who didn’t have such severe special and medical needs. While we were in the sub-acute facility, we saw how little support and acknowledgement she and the children received from the world around them, although they were located in one of the most bustling, wealthiest cities of the country. Also, growing up in an Indian, south Asian culture, I saw the shame and stigma that surrounds having a child with special needs (thankfully I had a family who loved Moriah wholeheartedly, and treated her no different than any other child).
When I would take Moriah out in public, people would either stare or just walk away. Sometimes, the staring would be so awkward that I would tell Moriah that she was the Star and that they were her fan club. I would tell her to just wave and say “Hi.”
And so after Moriah died, Hiya Moriah was born.
My hope is to create a space where Moriah and her friends can see themselves and their experiences represented. I want to create a space where children can be empowered with knowledge about others, and values of self-worth, kindness, and acceptance. I want to create a space where children can empathize, and learn how to enter different worlds that they aren’t familiar with..which sometimes the simple act of saying “Hiya” can open a whole new world of friendship and opportunity. I love the saying “to have a friend is to be a friend.”
And lastly, I want to create a space where I can continue the legacy of my sweet girl,
and the everlasting impression that she left on this world. I can just imagine Moriah looking down from Heaven, smiling, and saying “Hiya” to all of us.
Jadon, Moriah, Justin, Victoria, new brother Shane, and Olivia Nelson
©Victoria Nelson 2018 All Rights Reserved.