Anophthalmia. I can still hear the words “Your baby doesn’t have eyes.” clear as day. Like what did you mean she doesn’t have eyes?! I mean, I know people are born blind, but to not have an actual eye seemed impossible to wrap my brain around. I reacted like a typical mother would and blamed myself. Hell, I still do somedays!
Anophthalmia would eventually become one of the least of my worries. Overtime, we’ve received several diagnoses. CHD, hypotonia, microcelphaly, epilepsy, sleep apnea and sensory processing disorder. She’s tube fed and wears AFOs.
Having a child with special needs is a life long grieving process. Each new milestone or major life event that doesn’t happen for your child, is a painful reminder of what you lost due to their disability. However, because of this experience, because of this loss, I have also gained SO much! I am learning the value of true unconditional love, PATIENCE (OMG), and joy. Yes JOY! I am learning to find joy in the simple things. In the small moments. I find joy when she does what doctors expect her not to do. ♡ My heart is full. MY CHILD WHO IS BLIND IS TEACHING ME TO SEE!!! Her siblings will learn to accept different and embrace others with disabilities. Life with Evely is FAR from what I imagined. It’s way more challenging, EXHAUSTING, and overwhelming. But I have her. SHE IS MINE. To my fellow parents with kids with special needs, the grieving process of losing what you envisioned to a disability is continuous and appropriate. Doesn’t mean you’re a bad parent or love your child any less. You create new memories, new milestones and new things to look forward to. But this doesn’t mean the life you dreamed of, the one ripped away by a diagnosis won’t creep back into your heart and cause grief. Cry, scream, GET MAD! Do what you need to do to get it out of your system then go on loving your beautiful, challenging and unique child who is ALL yours!
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