I suppose there are a lot of things that i am still unable to say out loud. Saying things out loud can give them power, can make them grow and take root and take form and take over. I refuse to allow that to happen. Instead i accept no other alternative than the fact that i will recover my daughter.
For the greater part of the past two and a half years i have been begging the question “What is wrong with Paloma?” I have asked therapist, teachers, Dr’s.. other parents, family, friends… anyone that would listen. I have cried, i have started new therapy, quit therapy, seen every type of holistic Dr, traditional Dr, home school, pre school, routine, no routine… cried more.. what was happening to my bright baby? Why was she slipping through my fingers? Why was no one listening? I began to feel crazy… like the mother always looking for something to be wrong.. maybe i just needed to wait it out. After all she would do things on her own time line.. she had stopped reading because i wasn't working with her enough..And she lost her words and didn't talk much because she has verbal apraxia..And her receptive language is so bad because i just didn't play the auditory processing games enough… that was it… i had figured it out… I had just been a bad mother.. After all hadn't i let her eat gluten while i was pregnant? And didn’t i let her watch too much TV? Never mind infection after infection… Another two… or was it three surgeries? And then the Mono that stole a year from us last summer… the strep… the pneumonia… and still i asked “What is wrong with Paloma!”
Being a special needs parent can be isolating in and of itself. Being a parent of a child with Down syndrome, who isn't like the other children with Down syndrome isn’t just isolating..it’s absolutely excruciating. The feeling of being less than, the feeling of your beautiful child being less than.. it’s more than i could handle.. slowly i left the groups.. slowly i lost touch.. but still.. “What is wrong with Paloma!” I could see it in the teacher's eyes.. the well meaning therapist when i asked her if i would ever have a conversation with my daughter.. Would my daughter ever be able to tell me about her day?… Or maybe just tell me her name? No one had answers for me out side of “Down syndrome is a spectrum.. “ or “ She may just be lower functioning….” but they didn’t know my baby.. they hadn’t seen what i had seen… those bright beautiful eyes had gone dim… and i felt like the only person in the universe who noticed… so i kept asking “What is wrong with Paloma?” Only now i had stopped asking out loud..
Being Paloma’s mom and loving her.. is like trying to wrap your arms around the moon.. it’s catching her smile and swimming in it.. it’s that little star fish hand sliding into mine… the softness of her palm and her delicate little fingers.. her grasp.. not too tight.. just firm enough not to slip away.. that’s how it feels to love Paloma… like it could slip through your fingers.. so you cradle it..and hold it gently.. change with it… bend.. take each blow as it comes…forever humbled and never looking too far in the future… because it hurts… and i hurt enough.
And the..suddenly... sometime, give or take three weeks ago, i understood what had happened to Paloma. No one told me, and no one had written it down on a piece of paper… they didn’t have to.. it was as if suddenly Paloma’s life played backwards before my eyes.. and the pieces fell around me.. and inside my heart i had the answer.. I knew what was wrong with Paloma.. i knew why her eyes had gone dim…
So here we are… so much to say, but i won’t.. i am just going to do.. i am going to fight, and read and pray and learn and believe… i am going to hold my head up and breath. I am going to love my baby well again… and i am going to watch those eyes grow bright again….