Disability + Differences Spotlight || Sophia

Hi guys, Miggy here. It’s been a while since I’ve had a spotlight for you, and I’m excited, honored and humbled to share today’s spotlight. This is one of the few posthumous spotlights I’ve done and as always, these are especially tender. Additionally, as you’ll learn, during her life Sophia was often the target of horrible online (and sometimes in person) bullying. This space here today is sacred space. This is hallowed ground and I ask that all of you longtime TLM readers circle the wagons with me and provide an extra cushion of love and acceptance for Natalie and her family, especially her sweet Sophia.
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My name is Natalie Weaver, and I am an activist and the founder of Sophia’s Voice and co-founder of Advocates for Medically Fragile Kids NC. My husband Mark and I have three absolutely amazing children. Alex is 9, Lyla is 6 and our Sweet Sophia would have been 11 years old. Sophia died 8 months ago, and our lives haven’t been the same. She was everything to everyone in our family. Sophia was born with deformities to her face, hands, and feet and was diagnosed with a rare immune deficiency, Rett syndrome (which comes with a host of other conditions), and type 1 diabetes. We always knew that our time with Sophia would be too short, but we never knew when. We always tried to live in the moment with her and make sure she experienced nothing but unconditional love from us and others. We were so very proud of Sophia and the impact she made and continues to make in this world. If you want to learn more about our ongoing journey and fight for equality you can follow me on Instagram, Twitter and Facebook. 

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Miggy: Natalie thank you so much for being here today and sharing your family, and in particular your sweet Sophia, with us. I am honored to share your story. First, can you take me back to the beginning. When did you first find out about Sophia’s disability and her medical complexities and do you remember how you felt and can you describe those feelings? What were those early days and weeks like?

Natalie: I found out about some of Sophia’s disabilities and medical complexities during an ultrasound at 34 weeks pregnant. Everything was missed during all the previous and routine ultrasounds we had. We were rushed to a specialist who spent two hours examining Sophia through the ultrasound. I was eventually told that Sophia would be born with deformities to her face, hands and feet and that she might not survive birth. They had never seen this before, and they didn’t know the outcome. I felt complete shock and the heaviest weight on my chest. Everything we had planned for disappeared in an instant and our world felt like it was crumbling. We had four weeks to prepare for the unknown. I remember being so afraid and depressed. It was a heavyweight to carry, but I had to find ways to relax myself because I didn’t want to add any stress to Sophia. It was the first time in my life that I felt immense fear, but this time I couldn’t run away from it. We held onto hope that everyone would be okay and she was okay. She was the strongest human being I’ve ever met.

Miggy: Sophia had a range of medical complexities and disabilities. Will you please educate us on Sophia’s condition and explain how her needs affected your day-to-day life? 

Natalie: We didn’t find out about Sophia’s conditions until years later. Every genetic test came back negative for any chromosomal changes or syndromes. None of her specialists had seen anyone like Sophia, so she had a lot of tests in the beginning. The first several years were relatively calm medical wise except for some surgeries to help maintain her vision and to give her a chance to walk. Then health issues began to develop and each year brought a new challenge and diagnosis. Sophia was first diagnosed with a rare immune deficiency which we found out much later was the cause of her facial, hand and foot differences. Then she was diagnosed with Rett syndrome, though her mutation on the MECP2 gene is one that’s never been documented. Rett syndrome is what caused her regression around the age of three. She lost the ability to sit, stand, talk, eat by mouth, use her hands, and coordinate her movements. She still had moments of being able to do some of these things, but it took considerable effort. Rett syndrome also caused her epilepsy, tremors, dystonia, scoliosis, swallowing, and breathing issues.

Sophia also had type 1 Diabetes. None of these conditions were hereditary or caused by anything other than natural and spontaneous genetic changes. This is who Sophia was always going to be, and she was meant to be one of a kind. Sophia required 24-hour, around-the-clock care. She needed assistance to do most things. We were trained to care for her at home medically and had nursing assistants who helped. We had all the things you would need while in a hospital, but at home, and of course, we decorated it to fit her princess status. She always had to be watched to keep her safe, protected, and alive. My ears were always open, and I was ready to drop whatever I was doing to run to her to assist in almost daily medical emergencies. Throughout her life, she had 30 surgeries, ranging from minor to major, to help improve function and decrease pain. The stress, anxiety, and worry were unimaginable, but I continually adjusted to it so I could be there for Sophia and my family. It was my priority to be the best mom that I could be. I am honored and proud to be her mom.
Miggy: Sadly, Sophia passed away this past May. Naturally, this has been a very difficult time for your family–the most difficult thing any parent can imagine. What would you like people to know or understand about grief as you walk this path? People often want to help when a parent has lost a child, but sometimes they don’t know how–what has been most helpful to you and your family during this time? And how can people continue to support your family?

Natalie: The thing I want people to understand about grief and, in particular, losing a child is that it is the most life-changing, painful, and challenging experience. There is no moving on or getting over it. Grief will always be with me, and I’m just trying to learn to live with it peacefully. There is nothing anyone can say or do to change that. I don’t need the perfect words, advice, or sayings. I just need people to show up. I need their physical presence. The presence of others who sat with me held me and listened to me during my darkest hours helped me the most. I just want to be seen and heard without trying to be fixed or changed. I will miss my child forever and the ache will always be there. Don’t’ avoid me or avoid saying Sophia’s name. Bring her up, say her name, share a memory and I will forever be grateful for that. Ask me how I’m doing ‘today’ because it acknowledges that you understand that my emotions change every moment and every day. People can continue to support my family by supporting the work I do in honor of Sophia and fighting with me to change this world to make it more accepting of kids like Sophia.

Miggy: Many people are already familiar with your story as you’ve been featured in prominent news publications like CNN, Newsweek, Today and you even received a personal response from Barak Obama on Twitter. When Sophia was born you didn’t just become her mother, you also became a fierce advocate. Sadly a lot of this advocacy stemmed from the severe online bullying directed towards Sophia on Twitter and other platforms. While you successfully were able to get Twitter to change their guidelines to include protections for the disability community, the fight for dignity and inclusion for people with profound disabilities and facial deformities is far from over. What do you want people to know about online bullying, advocacy and what they can do to be an advocate as well?

Natalie: It was 2018 when I got Twitter to include disability in their reporting tool and 2019 when I worked with the head of Instagram to make changes regarding hate speech and bullying of people with disabilities and facial differences. The bigger problem is that most of the time, these social media giants didn’t even recognize what hate speech and bullying towards people with disabilities and facial differences looked like. There is still a lot of work to be done regarding these specific issues, and the more people that join the fight, the better. 

I want people to understand that there are people who are bullied merely for existing. So many people respond with shock when I share the hate and violent threats I’ve received. To me, it just signifies that people aren’t in tune with the amount of hate that people with disabilities and facial differences receive. Just taking my daughter out meant we would be met with stares, discomfort, discrimination, and even cruelty. It happens in society and online. I want people to follow activists with disabilities so they can become more aware of the constant threats toward people with disabilities and facial differences. I encourage others to listen, learn, and join their fight for equality, accessibility, healthcare, kindness, acceptance, and so much more.
Miggy: Natalie, you’ve also become an advocate at the state level and run an organization called Sophia’s voice. I would love to hear more about your foundation and the work you do.

Natalie: I started Sophia’s Voice almost two years ago. As my platform grew people began to reach out to me asking for help. I realized that I now had the resources to directly help others and it brought me so much joy and fulfillment to do so. I thought it would be great to create an organization in honor of Sophia. The name Sophia’s Voice represents that Sophia has a bold and powerful voice even though she cannot speak in the typical sense, and the logo is of Sophia’s actual heartbeat. Sophia was my partner, and she felt so much pride in the work we were doing and the effect she was having. Her legacy, voice, and impact lives on in the work that I do. We do several things at Sophia’s voice. We work to normalize facial differences and profound disabilities. We do this by giving a glimpse into our lives with Sophia. We also work to hold social media giants accountable for recognizing and taking action against hate speech and bullying towards people with facial differences and disabilities. Most importantly, we help people directly by providing financial assistance for medication, doctors’ appointments, medical equipment, supplies, medical debt/bills, and other things related to medical hardships. We also financially support the work and efforts of activists with disabilities because their work is vital.

Miggy: I know from firsthand experience what a special role siblings can play in relation to having a brother or sister who is disabled. Will you tell us about your other children and their relationship to your Sophia?

Natalie: Sophia was our first child, and then we had Alex, who is 9 and Lyla, who is 6. They both had an incredibly special relationship with Sophia. They were so sweet and gentle with her. Sophia was just a big sister to them. They recognized the differences, but it didn’t matter at all. Alex and Lyla were always protective of Sophia and took pride in their relationship with her. They would fight over who was her favorite or who sat next to her, and Sophia would just giggle. They are compassionate and learned many of the different ways to care for Sophia. It was second nature to them. They adapted their games to be able to play with Sophia, they laid and watched tv with her, cuddled, read books to her, and brushed her hair. They took great pride in helping with medical tasks like turning her suction machine on when she needed it and turning her feeding pump off. Since losing Sophia, they have struggled with their grief, and they miss her so much. We all go to grief counseling together, and it does help us a lot. Sophia was the center of all of our worlds, and our lives aren’t the same without her. 

Miggy: Would you please share something you love about Sophia–a special story, a personality trait or just something others might not know?  

Natalie: I loved absolutely everything about Sophia. Even though she couldn’t speak in the typical sense, she could communicate and made herself very clear. Every once in a while, she could say words. She was able to say “Hell Yes!” when she was excited, she rolled her eyes and even called me annoying. I loved her personality. She was so kind, accepting, and loved being with her family. She loved music, and we would have dance parties often. She had a naughty side too, and when she could coordinate her movements and a drink nearby, she would knock it over and giggle. The best things about Sophia were her beautiful blue expressive eyes and her infectious giggle. She had the power to wash away all stress and pain just by being in her presence. Miggy: Natalie, I’m assuming it’s safe to say you’re not the same person you were before Sophia was born. What is the biggest lesson you’ve learned since becoming Sophia’s mom?

Natalie: I am not the same person I was before Sophia was born, and I could write a book on the ways she changed me and the lessons I learned from being lucky enough to be her mom. She brought out a strength and courage that I never knew I had, and she is the reason that I am who I am today. Sophia gave me the strength, courage, and fire to fight back, speak out, and create real change in this world. She is the reason I found my voice. I have so much more compassion, understanding, and acceptance in my soul because of her, and I’m better for it. She taught me the true meaning of unconditional love. I feel a bit lost without her here, but I hope in time to find myself and my way again. 

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Natalie, thank you so much. That was a beautiful spotlight and tribute to your daughter. It wasn’t that long ago that I might not have paid much attention to the whole person that Sophia was. While I know I would have never been cruel to her, I also know I probably wouldn’t have reached out in friendship. I would have let my insecurities about disability keep me from getting to know someone as remarkable as Sophia. Hearing you describe Sophia’s personality from her occasional “hell yes!” to calling her mama annoying and of course her sweet and loving side, hopefully reminds people that Sophia, and other people like her, are whole, deep, humans with personalities, likes, dislikes and people who love them completely. As you said, you’re not the same person you were before Sophia and I’m so grateful that I am no longer that person I was before either. As people like you continue to spread messages of love, humanity, connection and hope I think more and more people will join us in letting go of their fears and embracing more fully people who are profoundly disabled and/or who have facial deformities as the whole, amazing, messy humans they are. Thank you so much Natalie for sharing your sweet Sophia with us. 

If you or someone you know would like to participate in the Disability + Differences Spotlight please email me at thislittlemiggy at gmail dot com. 

Have a wonderful weekend.
XO, 
Miggy