“I never wanted to change Sophia for the world but instead wanted to change the world for Sophia. I just wished I could’ve accomplished that while she was here.
It’s been five months today since I was cuddled up with my 10-year-old daughter in her bed as she took her final breath. It is and always will be the darkest and most painful moment of my life. I didn’t think I’d be able to survive this pain, and some days still don’t, but I keep going for my husband, my other kids, and the people whose lives were impacted by Sweet Sophia and have yet to be. Sophia’s life not only had a profound effect on her family, but she also had a profound impact on people from around the world. Even though she is no longer physically here, her life and influence will live on in the work that I do to normalize profound disabilities and facial differences. I vow to keep her message of unconditional love and acceptance alive.
During Sophia’s final days, she was surrounded by unconditional love, support, and adoration. The same way she spent every day of her life. She had gotten sick, and we knew this moment was coming. Sophia was already in hospice care in our home. We had made the devastating realization four months earlier that her body was tired and had had enough, and her specialists agreed. She almost died after surgery several months earlier, which she needed due to internal damage from another surgery. It became too much for her body. She couldn’t speak words most of the time, but she could communicate with her expressive eyes and in various other ways. When I told her that she wouldn’t spend another day of her life in a hospital or experiencing another painful surgery, a smile and the dimples under her eyes emerged. She mustered up the ability to say and sign, ‘All Done,’ very loud and excitedly. She gave me an approving and ‘finally mom’ look. I knew we had made the right decision, the hardest decision of our lives.
We thought we had at least a year left, but we lived every day of those four months as if it could be her last. Thanks to the large community on social media that supports and loves us, we were able to provide Sophia with some fantastic and first experiences. Businesses opened up their doors for us when they were closed so we could keep her as healthy and safe as possible. She watched a movie at the movie theatre and got her hair done at a salon. She took a private tour of an art museum, and the Georgia Aquarium. She had a private roller-skating party while listening to her favorite music, and received a doll that looked like her, from A Doll Like Me. She went on fun family vacations and had so many beautiful adventures. It was a beautiful four months full of happiness and #SweetSophiasAdventures.
Sophia knew about the impact she was having on others and the positive changes we were making, and she was so proud. Every day I read her the messages of love and encouragement that many people sent her. She was so happy about the large and loving community we had built. Still, a large and supportive community didn’t always surround us. We spent the first seven years of Sophia’s life very private because of the way we were treated when we brought Sophia out into the world.
When Mark and I decided to get pregnant, we never imagined our lives would be anything other than typical, but that all changed in the blink of an eye. I always wanted to be a mom, so my husband and I were beyond excited when we learned we were expecting. Every ultrasound throughout the pregnancy, we were told our baby was doing great until an ultrasound at 34 weeks. Our world came crashing down when we learned that something might be seriously wrong with our baby. We were immediately rushed to a specialist. It was then that two doctors spent two terrifying hours carefully examining Sophia through an ultrasound. I will never forget the moment we were told the news.
‘Sophia’s mouth, hands and feet are severely deformed. She might not survive birth,’ they said.
We were devastated. We had four weeks to carry the weight of this news. It was a challenging time, but we remained hopeful that our baby would be okay. I questioned my strength, and if I could handle this, but I had no choice but to face whatever was to come.
Sophia’s birth was the exact moment our lives changed forever. She was immediately whisked away to the other side of the delivery room. I felt helpless, while many doctors and nurses worked on her. ‘Is she okay? Is she okay?’ I asked again and again, hopeful they had made a mistake about the ultrasound, but no one would answer. Miraculously Sophia was breathing on her own, and when they laid her on my chest, a voice in my mind said, ‘comfort her, you need to comfort her.’ I was in shock as my little girl stared into my eyes. I had never seen anyone like her, and the moment I reached out to touch her, she was gone, taken away for testing. Hours went by, and my husband was the first to see her. I remember him coming back to tell me about her and proudly stated that he was the first to change her diaper. He gave me the strength and courage to face our new reality, and so I went to see my baby girl. The first time I held Sophia, I began to sob. All the shock and fear faded, and I knew at that moment that the immediate love I felt for my child would give me the strength to be the mom she needed me to be. I knew I would do whatever it takes to care for my child and fight for her life. I found my strength in Sophia.
All tests in the NICU came back typical, and we believed the only challenges she would face would be due to the differences in her mouth, hands, and feet. So, we took our sweet baby home after a month in the NICU. She was the sweetest baby, and we adapted everything to make life easier for her. She had weekly therapy to learn how to use her hands, eat, and stand. She was so strong, happy, and healthy. She would speak, play with toys, loved to cuddle, laugh, and spend time with her family. You could see her sweet and sassy personality early on. She was developing and relatively healthy until her immune deficiency, and Rett Syndrome entirely presented itself. She lost the skills she had developed. They were replaced with seizures, breathing issues, infections, medical treatments, and surgeries. Each year brought a new diagnosis.
Sophia was like no one in this world. Her combinations of conditions made her one of a kind. All of her conditions were spontaneous genetic changes, not hereditary or caused by anything specific. She had a total of 30 operations to improve function and decrease pain. Even though she lost a lot of things, she didn’t lose her sweet and sassy personality. She was so strong, loving, and had the kindest spirit. She loved to be around her family, cuddle, and laugh. Her giggle could wash away all pain and stress. Being in her presence was a gift and so special. I feel so lucky that I had 10 and a half years with her.
We spent many years of Sophia’s life private. One reason was that taking her out put her at risk because of her immune deficiency. The other reason was the cruelty we experienced while out. Early on, before we knew about her immune deficiency, we would take her out everywhere. It didn’t take long to realize that most of society didn’t accept our beautiful baby. I couldn’t go anywhere without dozens of people staring, whispering, making rude comments, or altogether avoiding us. I vividly remember the moment that broke me. We were visiting Philadelphia to see a specialist. We had Sophia in her carrier, and two teenage girls screamed at the top of their lungs. As they walked away, they began laughing hysterically. This was after months and months of being treated horribly while trying to do the most basic and everyday things. Grocery store trips and running errands took so much strength and courage, and every time I was brought to my knees in pain by the way society treated my child. I never wanted her to experience this cruelty. After years of this, I decided I would protect her from knowing this pain. So, we created a fun, beautiful, and loving environment for her at home. My husband and I had two other kids who adored her and didn’t care about her differences. She was just a big sister to them. We made sure that Sophia experienced nothing but unconditional love, adoration, and fun in between her medical appointments, surgeries, and complications.
We remained private until I lost that privilege when Sophia’s healthcare was under attack, which also meant her life was under attack. I was always her fiercest advocate. I got her everything she needed through insurance, even if the first answer was no. So, naturally, I was going to fight this. I decided after going back and forth for weeks that I had to share our story publicly. I gave TV interviews, traveled across the US to give speeches, spoke on panels, raised awareness online, and have been doing this work for three years now. So many people fell in love with Sophia and were impacted by her spirit just as we were. We gained support from across the world, but It didn’t take long before I began to get attacked online. People made cruel comments about her looks, told me to kill my child, and we’ve received threats of violence, but this time, I fought back and was strong enough to keep going.
Over a year ago, I created an organization called Sophia’s Voice in her honor. We help people with disabilities receive assistance and also hold social media giants accountable for protecting people against cyberbullying and hate speech. So far, we’ve worked with and made progress with Twitter and Instagram and have helped over six dozen people with medical-related expenses. I haven’t been able to work as much but plan to get back to work when my heart feels a little less shattered after her death. I know I will carry this grief and a broken heart for the rest of my life, but I want to continue this work in Sweet Sophia’s memory. Sophia changed me and made me who I am today, and I thank her for that. I found my strength and voice because of her.
October is here, which means we will be celebrating Sophia’s 11th birthday without her, then all the other big holidays that follow. I know these next few months will be tough. The most painful part of all of this is missing her and aching for her, and there being nothing I can do about it. This is the deepest pain I’ve ever felt in my life and will likely ever feel. For everyone who has followed her journey, thank you all for being so kind, compassionate, and supportive. It means the world to me.
I never wanted to change Sophia for this world but instead wanted to change the world for Sophia. I just wished I could’ve accomplished that while she was here, but instead, I will try to carry on her legacy and do that for the other beautiful children like her.”
This story was submitted to Love What Matters by Natalie Weaver. You can follow her #SweetSophia journey on Instagram, Facebook and Twitter. Do you have a similar experience? We’d like to hear your important journey. Submit your own story here. Be sure to subscribe to our free email newsletter for our best stories, and YouTube for our best videos.
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