As our children grow we can’t help but look forward to the life they have in front of them and what they will become.
But for one little girl her parents knew they didn’t have long with her and prepared themselves for the worst.
When mom Natalie Weaver was 34 weeks pregnant doctors told her there was something was wrong with her baby. They couldn’t say what but said her mouth, hands and feet were likely to be deformed.
Even more heartbreaking was the uncertainty as to whether their sweet baby girl would survive.
Aside from her facial deformities, Sophia was also diagnosed with an immune deficiency and Rhett Syndrome, a rare genetic mutation affecting brain development primarily in girls.
Sophia survived but her life was dominated with seizures, breathing issues and infections and having to endure 30 surgeries, as reported by kidspot.com.
Her family not only had to watch their sweet baby girl suffer but when they shared her story online they were subjected to cruel comments about Sophia’s condition.
Dad Mark said it was a horrific time but they gained strength from their daughter.
“Sophia demonstrated her warrior-like persona from the minute she was born,” Mark said. “She gave me the strength I needed to help care for her unique medical routine that was complicated and full of uncertainties.”
When doctors told the family that Sophia didn’t have long left they brought her home so she could spend her final days with her family.
Mark said he experienced a surge of energy as he held his daughter in his arms for the last time, having thought he might crumble when the horrific moment came.
But getting over her death is a constant struggle.
“It feels like pain and sadness are never-ending, and my grief is continuously present. I have never really known depression, anxiety, grief, loss, or deep sadness until now,” he told Love What Matters.
“I don’t know why I do it, but I write her name in the shower on the glass with a big heart almost every day. Perhaps it’s my way of remembering her with a simple routine and trying to focus on her amazing spirit that I like to believe is still around me every day. I can’t hold or kiss Sophia ever again. That is a pain that is almost unbearable at times.
“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.”
Mom Natalie is the founder of Sophia’s Voice, an organization that supports people with disabilities, caregivers, and the work of disability rights activists.
My heart goes out to this grieving family, they were lucky to have each other and I hope that time will help heal their broken hearts. Rest in peace sweet Sophia.
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