05/07/2024
This quote shared by Special Needs Survival resonates deeply with me, and I can’t help but chuckle because it captures my daily struggle so perfectly. Humor becomes a necessary shield; otherwise, the tears would be too quick to come, given the stress and anxiety that weigh heavy on my shoulders.
I know the pain of missed opportunities all too well, sacrificed at the altar of sheer exhaustion. It’s like I’m in a perpetual marathon, always straining towards a finish line that seems to recede with every step I take. I pour every ounce of my being into the smallest victories, ones that others might overlook, but they’re monumental to me. It’s been a relentless journey of teaching my son the basics that come effortlessly to most – mastering the act of sitting took us three long years, and speech and feeding have been a nine-year odyssey. And now, when he prefers to be fed and struggles to use the voice I’ve fought so hard to give him, it feels like a silent scream into the void.
The exhaustion is bone-deep. Even when my son isn’t physically with me, the advocacy never pauses. It’s an ongoing battle to get the world to look beyond his disabilities, to see the wonderful boy that he is. It’s an ironic twist that his good looks and the invisible nature of his challenges sometimes feel like a curse. People fail to recognize the depth of his needs because he doesn’t fit their preconceived notions of disability.
The fight for support and resources is relentless, made all the more frustrating by the fact that our needs are often dismissed. We don’t have the dramatic diagnoses that elicit immediate empathy and open doors to assistance. My son isn’t terminally ill; he doesn’t bear the hallmarks of the disabilities that prompt a second glance. He simply has a speech delay and relies on a wheelchair for mobility.
This life can feel like a solitary journey, but we persevere. We have to. The love for my son drives me, even when I’m running on empty. It’s a love that knows no bounds, that rises above the fatigue, the battles for recognition, and the endless advocacy. It’s a love that keeps me believing she could, even when she’s really, really tired.
Special Needs Survival 💚