Stephanie - posted on 02/05/2010 ( 7 moms have responded )
A recent post has lead me to this post because it is still something I'm dealing with and probably will for a very long time to come.
We are mourning the lost of a child. It is very real, physically, emotionally, and mentally. Our children have not passed on, but our hopes and dreams for our children that begun when we were pregnant have. I never realized how much I had hoped and dreamed for Annie and all the special mom/daughter moments we would share until I was told she had Angelman's and the typical development cap is a 36 mo range. I was devestated, for her, for me, and for my family. I wouldn't trade her for anything, she is my angel, my gift from God. It wasn't easy, for a long time. I blamed myself for her condition and I hated myself because of it. I tried so hard to make her keep up with kids her age. I secluded myself from anything to do with kids. I realize this wasn't healthly and that sooner or later I would have to face society. Sometimes I think I have finally accepted her condition and I am ok, then I see "normal" kids her age doing things I have only dreamed she would do or because she's a social butteryfly and loves everyone,strangers come up to her and talk with her, ask her questions; and thats when an ackward social interaction arrives. Do I smile and tell them a little about her, do I just ask Annie to wave to them and leave as soon as possible? Its after these incounters that I start to feel the "loss" again, the ever more present facts that Annie doesn't do developmental appropriate things and that depending on what it is, she may never.
The hardest thing I deal with constantly, is knowing I will never hear my child say" I love you". I know she does, and she hugs and kisses. But I'll never hear her precious voice. I am thankful evreyday that one of the side effects of angelmans is excessive happiness and laughter. This above anything else keeps me going, despite her medical problems and physical limatations she always always always has a smile. In her world it never rains and is a happy beautiful place to be.
So although we mourn the loss of the child we could have had, so we are blessed with and angel we would never have had the privilege to meet and love. Please feel free share you mourning and blessings. We've all been there and will revisit it may times. Know that you're not alone, we are always here for you.