Bennett's Wish

It’s almost that time. The time I have been anticipating, and dreading, since Bennett’s diagnosis of CDKL5 Deficiency Disorder. The time when strangers will know instantly that he’s disabled. The time when the stares, comments, and judgements will start. Up until now, Bennett is “just an adorable, sleepy baby” to the average person he meets. We get “Oh, isn’t he adorable!” comments from passerby mixed with big, smitten smiles. I’ve grown away from my feelings of insecurity and scrutiny when he was an infant and now we merrily go about our day, not giving a care in the world what other people may think or say. It’s almost that time to get a wheelchair. I knew it was coming. His therapist has been mentioning it for months. Every time I thought about it, I would feel a mixture of excitement for my baby boy to have the support he needs, and a feeling of pure devastation that this is WHAT HE NEEDS. I have a child with a lifelong, severe disability. He is most likely to never wal...

            The unknown is terrifying. The anxious, helpless feeling of not having a diagnosis is debilitating. You have no control. You have no power. You walk by a giggling baby saying, “Mama” at the grocery store. With a punch in the gut, you are reminded that you haven’t seen your baby smile in three weeks. The clerk asks how your day is. You briefly debate mentioning that you were holding your crying, seizing baby in your arms just that morning, feeling powerless and decide, instead, to say, “Great! How’s yours?” You then wait until you’re in your car to let the sobs escape and the tears stream down your face. Any “little” thing is a trigger- a tipsy toddler walking about, a friend’s nine-month-old saying their first words, a monthly milestone birthday, a friend’s social media post announcing one of her baby’s many firsts, brand-new and hand-me-down baby toys that are collecting dust in the garage… You know there’s something terribly wrong with...