This piece was written for my favorite organization We Are Brave Together.

Oct 18

written by Rachel Alves

Over the last eight years I have learned that this parenting gig is not for the weak.

Leaning on others is the only way to survive. This may look different for every family but at the end of the day, “It takes a village” is a phrase I very much understand and believe to be true. My village is my community. Although I am fortunate to have a loving and supportive family, the community I have as a mom looks a bit different through the lens of a caregiver.

When I became a mom to a child with a disability, my community morphed into something I never knew existed.

Community in my case is often women I have never met in person. Women from around the world who understand my struggles, who get the grief and exhaustion. Moms that I can laugh and cry with.

They show up for me on my worst and best days and cheer my child on from across a screen. They check in on hard weeks full of appointments and meetings.

A few months back, after a particularly difficult week, there was a knock at my door. To my surprise there were sweet treats and flowers delivered. Someone who lives in a completely different state took the time out of their busy and hectic life to think of me and to simply brighten my day. I was speechless and felt so appreciative of their kindness.

These strangers who started off as being moms that I could relate and connect to over our children have become my lifeline, my best friends. Endless text message threads, inside jokes, and someone to reach out to no matter the time of day.

My community checks in when they haven’t heard from me in a while. They empathize and rally with me.

Women that gather from all walks of life nodding their heads in agreement of understanding, not pity. The ones I tell my deepest darkest fears to.

A mom retreat organized by We Are Brave last May was my first experience of this face to face interaction. It was something I longed for but didn’t fully realize how much I needed.

Hearing others struggle in similar ways was healing. My favorite part of the entire weekend was when a few of us walked for hours on the beach together. We didn’t discuss anything in particular but the ease of that afternoon gave me so much relief.

I enjoyed hearing their ways of navigating particularly challenging conversations with school staff, inventive equipment hacks for more accessibility, and genuinely enjoyed just laughing with them. I came home with a full cup and heart knowing that I truly wasn’t alone.

My community is filled with support and kindness, compassion and connection. No judgement. Only grace, words of wisdom, and solidarity.

In a world where I often feel isolated, my community lifts me up. I feel so lucky to have We Are Brave Together as part of my community

October 2023 retreat Truckee CA

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Author: Rachel Alves

Hi there! I am a special needs mom to a beautiful, sweet girl. Audrey has a mutation on her CASK Gene. This is a rare genetic disorder that effects her globally. It has caused a seizure disorder as well as gross motor, fine motor and speech delays. A Microcephaly diagnosis comes along with it as well. Our last 8 years have been filled with therapy, learning about our daughter's disorder and also learning to cope while finding joy. Thank you for taking the time to read about our journey. For more information on the CASK Gene, please visit my Instagram @alvesmomkickingCASK.

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