A grieving father, Mark Weaver wrote a heart-warming story expressing the love he felt for his daughter Sohpia. He shared the hardships of her health struggles and the beauty he found in her soul. Sophia experienced developmental delays and struggles with her motor skills. She was born with a rare neurological disorder known as Rett Syndrome. Both Mark and his wife Natalie want the world to know how sweet their daughter was.
Grieving Father Shares His Story
In a publication on Love What Matters, Mark shared his story and the final moments before and after his daughter’s death. The grieving father says he handled things differently than he’d expected. Initially, he thought he’d, “collapse on the floor next to my wife Natalie, completely devastated, in tears, and struggling for each breath.” In contrast, his response was strong and collected. He says, “my focus was clear. My mission and purpose were clear, I needed to take care of my little girl because nobody else could. I called the nurse and the funeral home coordinator. I comforted Natalie, family members, and even cut some of Sophia’s beautiful long hair so we could have something of her with us forever.”
Mark wrote a touching excerpt in which he explains, “I am deeply conflicted about losing my sweet Sophia. While the pain of losing her is enormous, it provides me with some comfort to know that she won’t have to endure more pain, surgeries, and life-threatening complications. Selfishly, I want her in my arms right now, just one more, kiss, laugh, and one more giggle. That can’t happen and learning to live without it is a part of my grieving process.”
Read: Mother describes first moments meeting her child with Pfeiffer Syndrome
Grieving Father Faces His Daughter’s Death
He speaks of the bravery Sophia exhibited and how she fought her battles while always spreading love everywhere she went. The grieving father says of his daughter’s will to fight, “Sophia demonstrated her warrior-like persona from the minute she was born. She possessed an undaunting fight in her that surprised us. She gave me the strength I needed to help care for her unique medical routine that was complicated and full of uncertainties. Over the years, fear swirled continuously around my mind as Sophia grew older. Her medical conditions took her down a path that made it clear that her time with us on earth was limited. “
A Grieving Wife Speaks Out
Natalie says she got asked so often about Sophia’s condition that she stopped answering the question and so explains in a blog called, ‘What is Sophia’s Diagnosis?‘. Particularly, the answer is long-winded. Additionally, it sounds as though there were a few things that Sophia spent her life-fighting. According to Natalie, the things Sophia battled were not hereditary but a predisposed gene.
She says they went through extensive testing and in addition to Rett Syndrome Sophia also had Type 1 Diabetes. In 2019, Sophia’s mom Natalie vowed to keep Sophia’s message “of love and acceptance alive” stating, “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.”
What is Rett Syndrome
Rett Syndrome is incredibly rare and affects, almost exclusively, females. Symptoms range (there’s a long list) and each case varies from person to person. It is a progressive disorder, meaning that most often symptoms worsen over time. Typically, development starts at a common rate but also begins to slow over time. According to the NIH, those with the disorder have symptoms similar to those with autism. In early stages children may commonly walk on their toes, grind their teeth, or have difficulty with sleeping, eating, and breathing.
Sophia went through 30 surgeries in her short life and powered through them with a positive spirit. After the last surgery, she experienced respiratory failure, and her parents decided that would be enough. They took her off hospice and brought her home to spend her final days in a comfortable environment. In the time leading up to that the grieving father and family spent weeks doing the things, Sophia had always wanted to do.
The grieving father says, “I like to think that she had a special place in her heart for me and that nobody could make her laugh as I could. Sharing laughter in a lifetime of pain is truly a gift. I miss Sophia every day. She was my shooting star, and I was lucky to be her daddy.”
Both Mark and Natalie share the sentiment stating, they both felt “so lucky to be her” mommy and daddy. Sophia’s Voice is an organization of which the grieving father’s wife is founder. Natalie’s organization helps not only raise awareness for Rett Syndrome but helps families. Those who are dealing with the same hardships and need help with medical supplies, medication, appointments. They have even gone as far as helping families make their rent or mortgage and help with utilities.
Keep Reading: Dad Refuses to Give Up Newborn Son with Down Syndrome When His Wife Walks Out on Him
- Parents of 10-year-old with rare condition made her final weeks count: We said ‘let’s have fun’. People Mag. Michelle Boudin. June 12, 2019
- “‘I’ve spent 10 years fighting fiercely for her’: Sophia Weaver, now in hospice, is experiencing a whole new world of firsts.” WCNC. Meilin Tompkins. May 10, 2019