“To live colorfully is to carry yourself with vibrancy and warmth, and to share it in your own unique way. Speak in shades of silver and ink, paint blues with a brush or a song. The pages of your life remain black and white only if you let them. Fill them in with whatever colors you choose, and maybe every once in a while, let someone else color outside the lines.”
When a friend of mine asked if I could write about the ReelAbilities Film Festival happening in Houston, I immediately said yes. Growing up with a sister with disabilities I knew the importance of an organization like this in helping raise awareness about people with disabilities, and to eliminate barriers to accessibility in all aspects of life. But when she asked me to share #MyReelMoment how a disability or mental health issue has impacted the life of you or a person you know, I didn’t know how emotional it would be for me to share my story until now. This post is in no way shape or form sponsored, but I want to share this story because this is a big part of me, a big reason why I am the person I am today, and why I stand up for protecting the basic rights for all, not just in our country but those who are facing persecution today. I am my sister’s keeper. This is #MyReelMoment.
My sister has Sturge-Weber syndrome which is a “rare neurological disorder present at birth marked by a distinctive port-wine stain on the forehead, scalp, or around the eye.” It causes developmental delays, cognitive impairment, seizures , weakness on one side of the body, paralysis. “ But when we were little my sister, my brother, and I were fortunate to have a family that surrounded us with so much love, and never once made us feel any different from one another. I never realized my sister’s disability until we got into school. It was there I realized how different we all were.
When we went to school my sister struggled, unlike my brother and I who were immediately categorized in the “Gifted and Talented” program, school came easy to us. I would remember the long nights my mom and dad would try to help my sister through her school work, sometimes ending in frustration for my mom, who believed if you worked hard enough you can overcome any obstacle. My parents didn’t believe in special treatment. They wanted my sister to go to school and have as much as a normal childhood as my brother and I. But it was hard going to school when you were the only one with the physical birth defect, and unfortunately people can be harsh when they are presented with the “unknown” or something different from themselves. I grew up always weary of people’s comments and stares. It would make me so frustrated when people would make unintentional hurtful comments and yet I couldn’t do anything about it, because my parents always taught us to be the better person. You know that saying “sticks and stones may break my bones, but words would never hurt me?” Wish that was true but unfortunately words do have affect, and people will always remember how you made them feel.
As I grew up I realized more and more my responsibility to look after my older sister. My mom would always tell me how fortunate my brother and I were to be smart, to have all the opportunities in the world, and that when we became successful to always look after our sister. It was such a big responsibility growing up as a child, and sometimes I rebelled against it. I just wanted to be like everyone else who didn’t have to worry about those things. But from such a young age I knew my responsibility. I am my sister’s keeper. My biggest fear growing up would be that we would be separated, and that I couldn’t do anything about it. I would have nightmares growing up of us running away from bad guys and losing my sister. Up until high school, I never slept in my own room, afraid I would wake up to see my sister gone. I would always find my way into her room at night. Even to this day when I come over to visit, Jayden and I always find a way to squeeze ourselves in my sister’s bed with her.
Our family is very fortunate that we have not needed any outside assistance, that my sister has graduated high school on her own terms and has found a job she loves working with my Aunt. I am thankful for my parents for working hard to provide those opportunities for us. I am thankful for my mom, an immigrant, a single mom, who made the sacrifice to leave the life she knew in the Philippines, her family and friends, to marry my dad so we could have a better life in America. I am thankful for my dad for adopting us and loving us as we are his own flesh and blood, and for his sacrifices to make sure my sister had the best care. I am thankful for God who kept my family together safe so I never had to live my childhood nightmare. Unfortunately that is not the case for everyone in this world. Unfortunately there are many cases where children with disabilities are separated from their family, sometimes left to fend for themselves. We are fortunate here in the U.S. that we have programs to help those with disabilities however it is far from perfect. Thankfully we have organizations like ReelAbilities Houston who:
- Increase awareness about people with disabilities
- Change perception and remove stigma surrounding people with disabilities
- Eliminate barriers to accessibility in all aspects of life: arts and culture, education, and employment
- Collaboration across arts disciplines, organizations, communities
- Arts and inclusion education that will inspire the next generation of artists, audiences, future leaders, and employers
I highly encourage you to go out and attend this free event from February 13th to the 23rd (view event schedule here). To immerse yourself in the culture, to meet people who continue to overcome adversity, to open your hearts and minds to those different from you and live colorfully. I hope you realize that no matter how different we are, we are all the same under God’s eye. We are all His children, no matter where we come from, who deserve the same respect, humility, and right to life as the next person. Each of us is a color to this beautiful painting we call life.
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Thank you for allowing me to share my story. #MyReelMoment Unfortunately not everyone will have these experiences to help shape them to be more open minded and caring of those who are different from us. It is unfortunate people will choose only to live in their own little bubble, concerned with only what is directly effecting them. However your story doesn’t have to be black and white. You have the right to choose to live colorfully. To choose to step outside the lines of your comfort zone, to get to know someone different from you, to travel some where you have never been, to help some one less fortunate, and to open your doors and to open your heart. We are all our brother’s and sister’s keeper. We cannot flourish in a society with closed minds and closed hearts because fear resides there. So I leave you with this quote as it resonates with what is going on today.
“I am called to be my brother’s . . . my neighbor’s . . . even my enemy’s keeper. God invites us to love, stand up for, and kneel down in humility to serve others in our lives. And that call challenges us to step out of tight-knit circles of loved ones and out of our comfortable routines to see life through the lens of the kingdom.” – Kelli B. Trujillo
P.S. This is one of my favorite pictures of my sister Jesseliz and my little man Jayden. I am thankful for her in so many ways. Jayden is lucky to have her for an Aunt, to have someone who loves him unconditionally, and who is a living example that you can overcome any obstacle life throws your way. I am forever grateful to be blessed with a sister like her. She has always looked out for me from day one, and she is the best big sister I could ask for. She is my keeper.