Who am I?

I am Amanda, a stay at home mother to two wonderful children, Fiona & Ferris. Fiona has Autism, possibly caused by a small genetic deletion at 22q13.1 (but not the region attributed to Phelan-McDermid Syndrome - although she presents similarly), but we cannot say for certain, as her particular deletion is undocumented. In other words, according to medical literature currently available, she is the only known person with a deletion in this exact region, and so it is of "unknown clinical significance" and we have no idea what her future holds. Currently she is almost completely non-verbal, her only real word with any real meaning being "boob" as she is breastfed. *gasp* Yes, you read correctly, my almost 3 year old daughter still nurses, and I'm proud of that fact. Ferris is a neurotypical little chubba bubba baby man. He gives me sanity, and hope, and comfort for the future. He is nearly 8 months old at the time of this writing, and he is my charming, adorable, little-big guy. He is also breastfed, and doesn't seem to mind sharing with Sissy, who is the neatest thing since pureed peaches in his eyes. Want to know more? Just ask!

Monday, March 21, 2011

Seeking Sunshine

First things first, thank you for taking the time to check out my blog. I've tried to do this in the past but no one reads my ramblings and I get tired of talking to myself and quit. I'm rather socially awkward, and hate bugging people to read my rants and such, but of course back then I didn't have much that was all that interesting to blog about. Oh how life changes in the blink of an eye. I almost wish at times I still had nothing to say, but that just isn't the case any longer. Now I find that I need some sort of podium to voice my thoughts and concerns, my hopes and fears, dreams and nightmares, and day to day experiences and dealings with raising a child with Autism. This is my journey, my struggle, my life, as I work through the anger, and find my way to acceptance.

Don't take me wrong, of course. I love my daughter more than life itself and I really wouldn't change her for the world. I am still struggling with accepting her disorder, it is a fresh wound, and somedays I still break down and cry a river of tears, and feel so lost, and hopeless at my worst, but it doesn't mean I love her any less. The more I read the writings of other parents of Autistic children, the more I know I am not alone in feeling this way, and struggling with my emotions as I do. It is hard. Damned hard.

Every day, I wake up, pull myself out of bed, and think, maybe today is the day that she will talk. And I make myself get around and start my day,and go to bed thinking, maybe tomorrow... Every day she amazes me with how smart she truly is, and she shows me this constantly, even without any verbal communication, she gets her needs and wants across to me. She is a problem solver, a thinker, and demonstrates pure brilliance every single day. Every day, I sing to her , "You are my sunshine..." and it is true. But some days, most days, I still feel as if I'm sitting in the dark, grieving for the child I planned, the future that child had, the child I did not have, while still loving the child I have instead. This is something I struggle with as well. I love my daughter fiercely, and I feel guilty for even thinking in terms of grief, but I can't deny it, nor can I explain it if you don't already understand the idea of ambiguous loss.

So here I sit, seeking sunshine, with the brightest little girl in front of me, staring off to my right, unable to look me in the eye.

1 comment:

  1. I think it's normal to feel loss for yourself and your child when you realize they have special needs. It doesn't mean you love Fiona less it just means that you are human. I know when Thomas received his diagnoses of CP I felt completely lost. I feared he may not ever be able to live an independent life, go to college, find someone special to share his life, have a family, and do something wonderful with his life. Those fears were, and still are sometimes, painful. As time has gome by I see more and more every day some of the things he is capable of and my hope for him grows and the person he is becomes more apparent and more wonderful. It is my hope for you and Fiona that as the wonderful person she is continues to emerge that life for you both will just get better and better.