I found myself in line with around 30 others, absorbing insights from experts on running. Since I’m hard of hearing, I focused more on the shoes than the words. Then came the practice: I ran around the track, along paths, sidewalks, and even the beach. I kept pushing myself forward.
At first, it was incredibly challenging. On top of being in my first trimester, I was out of shape, carrying extra weight, and my lungs had spent two decades getting used to a pack of cigarettes daily! It was no walk in the park, and I won’t pretend it was easy.
Raising a child with a disability feels a lot like learning to run. We gather information from various sources, listening to what we should do. Sometimes we absorb this wisdom; often, we don’t. Most of the advice comes from others’ experiences and only a fraction will truly resonate with us.
Then, we hit the ground running: we advocate fiercely for our child, immerse ourselves in the language of disabilities, and engage in conversations, blogs, and sometimes heated debates. We cry—especially when hurtful comments come our way, like when someone at the grocery store referred to our beloved child as a “mongoloid retard.”
We confront our own pasts, grappling with every inappropriate joke we might have laughed at or every thought we regret. It’s exhausting and frustrating. We don’t want to be the language police, nor do we want to correct intrusive remarks about our child. Yet, propelled by love, we keep forging ahead because if we don’t, who will?
Over time, it does get easier. We grow stronger and more informed. We learn the necessary acronyms and build a network of supportive friends. We realize we are not alone in this journey. Breathing becomes less labored as we find our pace.
As we attend meetings, we encounter new parents who are just beginning their own journeys. We feel a deep sense of gratitude knowing we’ve advanced beyond that initial struggle. Yet, memories of those early days—when it felt like a monumental effort just to run a block—can wash over us unexpectedly.
Challenges continue to arise, and we may stumble into situations filled with ignorance and prejudice. At one IEP meeting, a staff member dismissively referred to my precious child as “slow.” I’ve heard therapists reassure me by saying, “Down syndrome kids are always a bit behind, so don’t worry.” Really? That’s the mindset we need for our child?
It’s overwhelming, and there are moments we want to give up entirely. But then, somehow, we find the strength within us to take a deep breath, get some rest, and tackle the day with renewed determination. It really does become manageable again.
Our ability to help others grows; we can uplift them, share our experiences, and remind them they are not alone. We remember how daunting it felt to be new to this community, with all its unfamiliar terms and challenges.
Eventually, the day arrives when someone jokingly labels us a “poster child for acceptance,” and we can’t help but laugh. We laugh until tears stream down our faces, recalling every moment of discomfort and every unkind thought we’ve had.
None of us are perfect, but in our struggles, we find common ground. We care deeply and love fiercely. This journey isn’t merely a race; it’s a relay between generations of parents, each learning and growing together. We are in this for our children, driven by love.
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