I am a special needs mom. Maybe some moms of children with disabilities prefer different terms, but for me it fits. Merriam Webster defines “special” as distinguished by some unusual quality, and our family, my children and I have special needs.
I have taught doctors a more than a few things about my child’s condition, and have even made the correct diagnosis before they could, or when they couldn’t at all.
I get up early to prepare medicine and perform medical procedures, these things don’t take breaks for anything—holidays, birthdays, or sickness or storms. They are part of our day. Every day. These early mornings often come after sleepless nights. I push through the brain fog to ensure accuracy and consistency, no matter what; my child’s life depends upon it.
My calendar is filled with appointments; schools, doctors, therapists and more. I am a professional parent, the most important member of each of the teams that support my child, and I take my role seriously. I have researched, fought, begged, researched some more, and spent untold hours and dollars ensuring the best for my child in every realm. I do not rest until I’m satisfied that my child’s needs are understood and met by all members of the teams that support him.
I know that every mom hurts for their child, but for some of us the hurts are amplified exponentially. Milestones that many moms grieve are milestones that I will never see. Your nest empties as your children pursue their dreams, mine will likely stay full; or perhaps I will make the gut-wrenching choice to move my child to a group home or facility. Until then, there will be dozens of rites of passage that most moms are sad to endure that I know we never will experience.
I often feel invisible or sometimes like a neon sign, it seems there’s nothing in between. Our family is a case study in extremes. I scroll through social media and see all of the normal family posts, which are so foreign they could almost be taking place on a whole different planet. I wonder if my posts make people feel uncomfortable, and am so thankful for private groups of moms whose children are so much like mine. They’re a haven to rest in when I feel like nobody understands.
Yet, I am nothing if not resilient. I have faced down life events that many parents only ever fear. I have faced doctors who struggle to find the words to explain my child’s condition, I have seen death kiss my child on the cheek before modern medicine chased it away, and I know that every day, every single moment is a luxurious gift, not to be taken for granted.
But mostly, I run on love for my child. My child is a fighter, a dynamo. I would be worth nothing if I didn’t give him the best of everything I have. I do this without a second thought, I couldn’t not do it. You wonder how I do it, I know there’s nothing else I could do. He’s my child, and I will give him all the best in the world because he deserves it. I will dig to the deepest reserves of energy and love, no matter what.
I am a special needs mom.