This is where is our story didn’t begin. This is where I realized that after years of teaching with special needs, years of advocacy with other families, and years advocating for myself and daughter it was time to be vocal. This is part of our story and there is more to come. My hope is that you will share your story too.
*orginally posted January 10, 2017
It’s been so cozy in our glittery wonderland of bubbles and glitzy paper; however, the holiday tilt a whirl has abruptly told us to get the hell off. The ton of brick of sorrow and fury hit full force today. It’s not a new or sudden burden, but a reality being acknowledged and denied all the same. For years, I’ve been told “she’s okay,” “there’s nothing wrong,” “we don’t see anything.” My daughter is the ghost child. You see the specter but right through her because you don’t see.
While my daughter is “okay” she’s not “okay.” This morning’s event has continued months of agonizing, acceptance, determination, reflection, and writing. In reflection, I keep going back to her preschool years when I literally thought I was going to lose my mind. Literally everyone indicated that there wasn’t anything wrong. It kept nagging as we stumbled through doctor visits, late nights, and uncertainty. Confirmation was something as a parent I needed and few offered their compassion. Most dismissed us. As it turns out she did and does have hearing loss. When those tubes fall out for the third time, we will be vigilant and awaiting our battle. I’m tired of being dismissed. I’m not the only parent who has experience this or feels this way. I hear you. Your anguish. Your need to be heard. Your unique dynamics in need of being understood.
In truth, to those who dismissed our cry, I’m angry with you for being so ignorant and uncompassionate. I’m livid at myself for my lack of self value to better advocate for her. Those bricks hurt like hell as I watched my daughter shut down in testing today, near tears, just so we confirm what we already know. It seems like torture for her to go through this. She has been coping but those threads are unraveling. We shouldn’t need confirmation; we need solution. We see all of her. Her uniqueness, talents, struggles, temperament, and yes, her disability. We won’t let our ghost child come undone just so you can “see it.”
It hurts to watch her struggle and dread basic tasks. It hurts to lose our cool when we don’t understand why she can’t be like our other kids. The guilt on days that we can barely handle it. It hurts to know something isn’t right and feel like we need to be committed to a psych ward because no one else sees it. While we are still in the phases of testing and evaluations, the instinct is stronger than ever. Our creative and insightful ghost needs more to be better understood. She needs more of me and she needs more of you.
Stop dismissing the ghost children.