In Sometimes I Forget I wrote about how easy it to forget sometimes, that our son has Down syndrome. There are some days that the fact he has Down syndrome is no different than the fact that he has blue eyes, or blonde hair. It’s there, but no big deal. It is such a small part of him, that it’s easy to forget, until I remember.
Sometime I remember and am in awe at all he has overcome. I am inspired by his determination and will. I am proud if his accomplishments and achievements. I am confident that he can conquer anything that this world has for him. I am entranced by his laughing eyes and goofy antics. I am captivated by the unconditional love that he and his sister show towards each other. Somedays I remember that I am the mom of a child with Down syndrome and I am completely okay with that.
Then some days I’m not. The realization of it grips my heart with such a fierceness that it seems to take my breath away. There is a heaviness that overcomes me as I look upon my son wishing that I could take away the extra chromosome. The one that reveals itself in his eyes, his walk, his speech. The one that forces him to work ten times harder than his “typical” peers to achieve. The one that makes him a target for glances that linger seconds too long and conversations uttered in hushed tones. The fear of the unknown coupled with worries for his future leave me paralyzed. Have I done enough? Can I do enough? To ensure that the world is changed enough for him to not just live and coexist in, but to thrive and excel and inspire.
There isn’t much that can be done to prevent those days. But for the days that you remember, and begin to feel overwhelmed, remember that you’re not alone. I have those days too. I find comfort from others who have beaten down the path before me. I find safety in walking neatly in their footsteps. Their words give me encouragement and hope that those days will become less and less as my child grows. I find security in holding my boy close and accepting the hugs and kisses he so freely give. To hold his hand in mine reassures me that together we will conquer all.
On the days that you remember, also remember how far you’ve come. Allow yourself to be reminded of the incredibleness that is your child. A being that was fearfully and wonderfully made. A son or daughter who has overcome insurmountable odds to even be here. Take a moment to remember the other days, the ones that occur more often, the days when you’re okay.
Because, you are. Even on the days you remember and you feel like you’re crumbling, just know that you’re okay. You’re not wrong in how you feel, you’re a mom, who wants what every other mom wants. This day will pass, you’ll go on and weeks will pass before another one. Then months and then years and eventually you will look back and wish you had known on those days that you remembered, that will be okay.
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