Dear Spectrum Mommy,
My name is Sandy, and I wanted to share my journey with you in hopes of finding some solace in knowing I am not alone. This journey has been a rollercoaster of emotions, and I believe you will understand the depths of my heart as I share this story.
Ben isn't my biological child; he is my husband's nephew. I have been his primary caregiver since he was just two months old, as his biological parents are separated. While Ben's father, my husband’s brother who is working abroad, provides financial support, his mother is mostly absent despite living nearby. It breaks my heart to see Ben waiting for her during her rare visits.
I was content taking care of Ben, but after three years of being unemployed, I had to return to work as my husband had just quit his job and was struggling to find a new one. During that time, Ben’s grandmother and my husband had difficulty caring for him. He was constantly crying, searching for me, and showing signs of what I suspected was autism.
After just four months of working, I resigned to focus on Ben, as his symptoms were worsening. He began bumping his head on hard surfaces, and I couldn’t bear to see him in such distress. We took him to a developmental pediatrician, and it was no surprise when he was diagnosed with ASD. We started occupational therapy, but Ben's biological mother still rarely visited, even though she was just a few streets away. It pains me to see him neglected by his own mother, especially considering his condition.
I love Ben deeply, but there are days when I wonder how long I can keep sacrificing for him. I’ve given up my career, and my husband and I are also trying to conceive our own child. Each month, when my period arrives, I feel a wave of depression wash over me. It’s been years of trying, but nothing yet. Sometimes, I think maybe this is why God hasn’t blessed us with a child of our own yet – because Ben needs us right now.
Amidst all this, I try to find moments of normalcy and connection. Sharing our experiences on social media has been one way I cope and document our journey. However, my mother-in-law advises me to avoid posting anything where Ben calls me "Mommy," as it might make his biological mother jealous. It’s frustrating because I’m the one who’s here, who’s sacrificing, and I feel I deserve to be acknowledged for that.
There are times when I see my colleagues thriving in their careers, and I feel a deep sense of self-pity. I struggle with the fact that I can’t return to work and focus on my own needs, and the frustration of not being able to conceive our own child weighs heavily on me.
Balancing Ben’s care and managing my own well-being feels nearly impossible at times. Yet, whenever I contemplate focusing on myself, I look at Ben and realize how much he depends on me. Despite my exhaustion and the challenges I face, I know that giving up on him is not an option. My commitment to Ben remains unwavering, no matter how difficult the journey.
Warm regards,
Sandy
Dear Sandy,
I’d like to share a quote that I believe truly reflects your journey: “Children with special needs inspire a special love. Their spirit helps us to be better people.”
Your dedication to caring for Ben is genuinely inspiring. The love and commitment you've shown are clear, and it's important to acknowledge and celebrate that. Your personal and professional sacrifices speak volumes about your strength and compassion.
Let me say, it’s completely natural to feel conflicted and overwhelmed at times. Balancing your own needs with the demands of caregiving is challenging, and it’s normal to have moments of self-doubt.
But at the end of the day, always remember, taking care of yourself is just as important as caring for Ben. By nurturing your own well-being, you can continue to be a strong, supportive presence for him.
As a devoted "mom", it’s essential to prioritize what feels right for both you and Ben. Seeking acknowledgment and support is perfectly valid, but what's important is to recognize that your value and contributions are deeply appreciated by those who understand your journey the most- first by God and second, by Ben.
If you’re thinking about returning to work or finding ways to focus on yourself, consider exploring options that allow you to balance your personal and professional goals with your caregiving role.
Your love and dedication to Ben are remarkable, and your story is a testament to the strength and resilience of an exceptional mother.
Love,
Spectrum Mommy
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