Parent Carer Collective: Tameka Simmons

Meet the mother of three who’s making it possible for families raising medically complex kids to find community, support – and play.

Her middle daughter, Evely, was born without eyes, microcephaly and a genetic condition that, eight years later, remains frustratingly mysterious. The love that abounds in her music-filled South Carolina home, however, is crystal clear. As is Tameka Simmons’ mission to help families like her own connect to one another – and access the support they need.

“Our household is filled with love, laughter, and the unique dynamics of raising children, including one who is medically complex with multiple disabilities,” says Tameka, a singer by trade who schools her three girls from their home in Greenville, also shared by goldendoodle pup, Phoenix.

Tameka, Evely and her sisters Luna, 10, and six-year-old Skye work together on their family's not-for-profit,Through Evely’s Eyes, which supports children with rare medical conditions. Recently, theyhosted an ImmUnity Play Circlefor medically complex kids at their local Children’s Museum.

They also hold Medical Moms Night events and provide support for siblings because, as Tameka says, ”they too play a crucial role and have unique needs and experiences”.

”Through our journey, we’ve learned the importance of community, advocacy, and celebrating every milestone, no matter how small.”

Here, Tameka tells us about her role of caregiver, how she looks after herself, and the incredible advocacy work her family has launched.

When we are expecting a child, we usually expect to be their parent, not their ‘carer’. Do you identify as Evely’s ‘carer’?

Yes, I do identify as Evely’s caregiver. As a mother of two typically growing and healthy children, I recognise that the role of a caregiver encompasses much more than that of a mother. The responsibilities, emotional support, and medical care involved in Evely’s daily life require a level of dedication and involvement that goes beyond traditional parenting. I consciously began to identify with this role when I realised that providing for Evely’s complex needs required a comprehensive, multifaceted approach to ensure her well-being and development.

How did you start forming connections with other parents raising kids with disabilities, and what changed for you once you started forming these connections?

I started forming connections with other parents raising kids with disabilities online. Initially, I felt a heavy sense of loneliness and isolation, but connecting with other mothers in similar situations eased those feelings significantly. It was comforting to know that there were other mothers who truly understood my struggles, concerns, and fears. These connections provided a supportive community where we could share experiences, offer advice, and find solace in knowing we were not alone in our journey.

Nowadays, what do you find most challenging about being a parent carer? And what brings you the most joy?

The most challenging aspect of being a parent carer is constantly having to fight for quality care, resources, and accessibility. The relentless advocacy required to ensure Evely gets what she needs can be exhausting and overwhelming. It’s not the disability itself that makes this journey hard, but the systemic barriers and hurdles we have to overcome.

What brings me the most joy is seeing Evely’s progress and milestones, no matter how small. The pure happiness and pride in her achievements are incredibly rewarding. Additionally, the love and bond we share as a family, and the support from our community, bring immense joy and fulfilment to our lives.

What is Evely’s relationship with Syke and Luna like? What do the girls tend to do together?

Evely’s relationship with Skye and Luna is the most beautiful and pure bond I’ve ever witnessed. They share an incredible connection that’s filled with love and understanding. The girls enjoy music and often have little dance parties together. They love playing on the trampoline and swimming together.

Luna and Skye are incredibly involved in Evely’s care. They show a level of compassion and dedication that is truly remarkable for their age. They help with her daily routines and are always ready to lend a hand whenever Evely needs it. Their involvement not only strengthens their bond but also teaches them empathy and responsibility. It’s heartwarming to see how much they love and support each other, making their sisterhood truly special.

Why did your family-run not-for-profit come to be – and how is it supporting families?

Through Evely’s Eyeswas born out of a deeply personal journey with Evely, who has complex medical needs. Navigating the world of rare diseases and medical complexities was overwhelming and isolating at times, and we realised there was a significant gap in support for families like ours. We wanted to create a community where families could find the resources, encouragement, and understanding they needed.

By hosting events, workshops, and providing resources, we strive to create a network of support that helps families feel less alone and more empowered in their journey. Our organisation is built on the values of compassion, inclusivity, and advocacy. We work tirelessly to raise awareness about rare diseases and the unique challenges faced by families, advocating for better resources and accessibility in our community.

Through Evely’s Eyes is not just a support system – it’s a movement to create a more inclusive and understanding world for all families navigating medical complexities.

What supports have you put around yourself – or do you hope to put around yourself, as a carer?

As a carer, I’ve realised the importance of building a strong support system around myself to navigate this journey effectively. Over time, I’ve put several supports in place to ensure I’m taking care of my mental, physical, and spiritual wellbeing.

I regularly attend therapy, which has been invaluable in providing a safe space to process my experiences and emotions. It helps me gain perspective, manage stress, and develop strategies to cope with the challenges of caregiving.

Exercise is another crucial part of my routine. It not only keeps me physically fit but also serves as a great way to release stress and boost my mood. Staying active is essential for my overall well-being.

Singing in my band is also a vital outlet for me. Music has always been a passion, and performing allows me to express myself creatively and connect with others. It’s a joyful escape from the daily demands of caregiving and a way to recharge my spirit.

I’ve learned that caring for all parts of myself is non-negotiable. Mentally, I ensure I have the right support through therapy and connections with fellow caregivers. Physically, I stay active and maintain a healthy lifestyle. Spiritually, I engage in activities that nourish my soul, like singing and spending time in nature.

Building this support system has been a journey, but it’s essential for my wellbeing and ability to care for Evely and her sisters. I, too, deserve care and attention, and by taking care of myself, I can be the best mother and caregiver possible.

What do you wish other people knew about life as a parent carer? And how do you wish other people responded to/approached you and your family?

I wish other people knew that our lives as parent carers are indeed hard, but that doesn’t mean they’re bad. The challenges we face are not because of our children’s diagnoses, but rather because of systems and structures that often fail to include and support families like ours. Navigating healthcare, education, and social services can be incredibly difficult when these systems are not designed with our needs in mind.

I also wish people understood that inclusion benefits everyone. When communities make the effort to be inclusive, everyone thrives. Inclusion means recognising and valuing the diverse experiences and strengths that each individual brings, and it promotes a more empathetic, supportive, and enriched society.

In terms of how I wish people approached us, a bit of empathy and understanding goes a long way. Instead of offering pity or making assumptions, I appreciate when people show genuine interest and willingness to learn about our experiences. It’s heartening when others recognise our strengths and celebrate our victories, no matter how small they might seem.

What advice do you have for parents who are new to caring for a child?

To all the parents out there navigating the complexities of raising children with medical needs, I want you to know that you are not alone. Surrender to the journey and embrace each day as it comes. This path is tough, but it’s also filled with moments of deep love, strength, and resilience. Lean on your community, seek out resources, and don’t hesitate to ask for help. Trust your instincts as a parent and advocate fiercely for your child’s needs.

Remember to prioritise self-care and mental health support – your well-being is vital to your family’s health. Taking time for yourself isn't selfish – it’s essential. Celebrate the small wins, because every challenge you face is an opportunity to grow. Your efforts are making a significant difference in your child’s life.

You are doing an incredible job, and your dedication and love are truly inspiring. Each step you take on this journey, no matter how small, is proof of your strength and commitment. Embrace the support around you, and always remember that you are enough. Keep going, and keep believing in the amazing work you are doing for your child and your family.

Looking to the future, what are your hopes and dreams around how Evely is cared for and your role in her care?

My hope for Evely is for her to reach her full potential, no matter what that looks like or how long it takes. I dream of a world where she is supported and valued for who she is, with access to the best possible care and resources. I want her to thrive in an inclusive environment that embraces her unique strengths and needs.

As for my role in her care, I hope to continue being her strongest advocate and source of tireless love and support. I want to empower Evely to become as independent as possible, while always ensuring she feels safe and cherished. My goal is to build a robust support network around her, including professionals, educators, and community members who are dedicated to her wellbeing.

Ultimately, my dream is for Evely to lead a fulfilling life, surrounded by people who will love her, believe in her and help her shine. I will always be by her side, ready to fight for her rights and celebrate her achievements, no matter how big or small.

Follow Tameka Simmons on Instagram and visit Through Evely’s Eyes .

Let’s clear out the complexities of care. Try Hibi for free here .

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