When I started a family, the last thing I ever imagined was having a child with disabilities and medical complexities. Even if I knew it was a possibility, it honestly wouldn’t have stopped me or my husband. It’s one of those things that’s impossible to imagine until you’ve experienced it for yourself. Like winning the lottery or getting cancer or even becoming a parent to a typical child for the first time. You don’t know what you are getting into, but you just do it because that’s where life took you, and despite the initial shock, you adjust, life goes on and then you are changed forever. Just like that.
This is what happened to me and my family in 2016. My husband and I already had one baby in 2014; as far as babies go, she was a dream. She was twenty months old, not yet two, when my son was born premature and had a six-week stint in the special infant care unit. And from that moment on, I was taught that I was the person responsible for fixing my child. From his clubbed feet to his torticollis, to his global developmental delay, his unidentified genetic condition and the additional neurological and developmental diagnoses that followed. My days were spent lining up and attending doctors’ appointments and therapy visits with infant and toddler in tow. I was told I needed to continue therapy at home, and did so religiously. I became so hyper-focused on the goals that I forgot about the child, the childhood. I look back on videos and all I see now is me pushing. “Say yellow,” “Roll Over,” “You can do it!” I pushed so hard that I missed the things he was doing and the moments of joy he was trying to share with me.
If someone had said when he was small, “Just enjoy them, time goes by so quickly,” as they do for typical kiddos, maybe I would’ve been able to step back and see it sooner. But no one did. Not one person. And so, I commenced fixing my child until one day I woke up. I had reached the end of my rope. I finally saw the damage I had been doing to my perfect child. My perfect disabled child. My child that that had learned through the years from me, from the pressures of society, that whatever he did, he was never going to meet our impossible standards. Ultimately, I taught him no matter what he did, it wasn’t enough. That whatever I did to help him, it wasn’t enough. It was never enough.
Through this blog, I hope I can help mothers and parents who are new on this journey to gain some early perspective, and those who are deep in it, crawl out of the muck to find joy in their life and their children the way it was meant to be. And if you are a friend, a family member, a doctor, or therapist, please take note and follow me for more insights on the other side…
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