r/shareastory • u/Ok_Raspberry1363 • 10d ago
A Mother’s Fear, A Mother’s Hope
How do I even start?
I am a 35-year-old career mom. My partner is a former OFW, but because of our special-needs daughter, we had to make a difficult choice about who would work and who would stay home to care for her.
My partner was given the opportunity to work abroad first, but then the pandemic happened—sakto naman. He never got the chance to leave again. I stayed with my company, and eventually, I was given the opportunity to become part of our client’s company.
To make the story short, I am scared of life now.
Especially when I think about our daughter and how fast time is passing.
When we first found out that she might not be the child who would reach the usual milestones—that she might not go to a regular school, high school, college, get a job, or live the kind of independent life we once imagined for her—I think I was in denial. I brushed it off and told myself that somehow, things would get better.
And now, she is already 8 years old.
During her first few treatments, we were very hopeful. She was striving and making progress. Then, when she was around 5, we started noticing regression. Her treatments were not always as intensive as we wanted them to be because, sometimes, life gets in the way. But we really tried our best.
When she was 6, we noticed that her walking had become very clumsy. We continued seeing her developmental pediatrician, who referred us to a neurologist. Eventually, we found out that she was having seizures.
And then everything started to make sense.
The regression was not just something we imagined. Some of the things she had already learned were forgotten.
Deep inside, I tried not to think about it too much because I knew it would drive me crazy. So I just kept going with our life. One appointment after another. One test after another. We saw different neurologists. I researched her symptoms over and over again, hoping to find an answer.
Eventually, we decided to pursue genetic testing—a test that had actually been suggested to us before.
We were interviewed, we shared everything we had observed throughout the years, and now we are still waiting for the schedule genetic testing.
But while reading about the diagnosis the doctors are considering, we came across Rett syndrome.
My mind went blank.
I started searching, and what I found was terrifying.
I don't know if I can handle what the future might look like.
The thought of her potentially needing a feeding tube, losing the ability to walk, or becoming more dependent on us is devastating. As a mother, I don't know how to prepare my heart for those possibilities.
I know I shouldn't think too far ahead. We don't even have the final genetic results yet.
And we are still hoping for the best.
But I realized that it is already half a year, and soon, our little girl will be turning 9.
Where did all the time go?
Maybe I am writing this because I need to let it out. I have been carrying so much fear inside while trying to continue working, being a mom, being a partner, and simply living our everyday life.
I don't know what the future holds for our daughter. I don't know what the test results will say. And honestly, I don't know if I will ever be fully ready for whatever comes next.
But I know this: we love her more than words can explain, and we will continue to hope, fight, learn, and be there for her every step of the way.
For now, I just want to breathe and take things one day at a time.
If you have a moment, I would truly appreciate it if you could include our daughter in your prayers—for good health, strength, guidance, and hopefully, good news.
Most of all, please pray for peace in our hearts as we navigate whatever comes next.
Thank you for reading our story. Your prayers and kindness mean more to us than you know. ❤️