A team works together to cross a gap in a mountain

It Takes a Village to See

A popular African Proverb that many have heard before is “It takes a village to raise a child”.

To me, it means that a collective of individuals come together to instill values, protect, and love a child in their own way. Such is true about my experience living with Stargardt's.

A "see-port" system

It takes a variety of people showing up for me in their own ways. As mentioned in a previous article I have an amazing “see-port" system who show up for me in their own authentic ways. Some of my friends physically read to me (menu, signage, expiration dates, etc.), some chauffer me around, others complete tasks that traditionally I struggle with (i.e. clipping my son’s fingernails), while others advocate for me when people make weird comments such as “where are your glasses?”.

Where are your glasses?

Every time I hear that question, so many emotions arise. There are times when I over-explain and there are times when I say nothing at all, and I awkwardly laugh and smile. Depending on who I am with, they will interject when someone makes a weird comment. I am appreciative of this advocacy because having to explain can be exhausting and emotional at times.

Traveling

On a day to day, I have people who help me better navigate certain situations. Travelling, while I love it, is often easier with the support of my traveling companions. They can help with the challenges that come with navigating new airports, especially when completing customs paperwork if involved.

The friends that make it possible

In December of 2021, I had the privilege of traveling to Mexico with my family and friends. My friend Chelsie, who I affectionately call “my hitta,” was extremely helpful during this experience. Before I could even ask for assistance, she would jump in to help me in an affirming way. She completed customs forms for me, read off menus at restaurants, and everything in between.

Chelsie and I have had the privallage of traveling to four countries and several states together over the past decade. It is so refreshing to travel with her because we have a good system that allows me to feel comfortable and empowered when exploring new places. Sharing insecurities and challenges requires you to be brave. My friend Caitlin, who I affectionately” call my A.C.E. shared with me Brene Brown’s acronym “BRAVING”. This stands for Boundaries, Reliability, Accountability, Vault, Integrity, Nonjudgement, and Generosity.

My incredible village

I strongly believe that my success is directly related to my incredible village who makes B.R.A.V.I.N.G possible. I know for a fact that my success is related to my ability to be vulnerable with my friends about my needs and necessary accommodation. Prior to feeling empowered and sharing my needs, I struggled in navigating life and school.

I am so grateful that I have finally reached the point where I am not ashamed, and I do not try to hide. Instead, I share the way I see it. I encourage you to embrace the acts of BRAVING, starting with sharing your needs, because it allows your village to show up for you. Of course, sharing doesn’t always go as planned. There are people who will be insensitive and who will not understand.

Remember what Dr. Seuss said “Be who you are. Say what you feel. Because those who mind don’t matter and those who matter don’t mind”… at least that’s the way eye see it.

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