This morning on the way home from school drop off, I stopped at a red light, and I turned around to smile at Georgia. She grinned back sunnily, as soon as she saw me turn, and all of a sudden, I saw her without her extra copy of the 21st.
A lot of friends with children with Down syndrome tell me that they don't see the Down syndrome. That they just see their children as all the same, and that often, they forget.
But I don't. I see it every single time I look at her. There is not a day that I don't think of Down syndrome, what it means, what it's doing, and to be honest, how it shapes every part of her. I asked her dad once, if he ever imagined what it would be like if she was the same little girl, but just with the Down syndrome taken away. He said he didn't, because it isn't, and can't be, and never was. And I feel much the same. It's not a place that I let myself go, as I know it would hurt too much.
But today, I saw it all, and I couldn't stop it, the big revelation that was triggered by that smile.
I saw a little girl with blonde hair, and hazel eyes. She wore pigtails, and she skipped beside me. I'd just picked her up from kinder, and I asked her how her day was. She told me that she'd sung songs, and painted pictures, and made a special treasure, just for me. I waited patiently as she squatted down, and fumbled eagerly with the zipper on her backpack, as four year olds do, so she could proudly present me with her masterpiece. A picture she had drawn of her and I, with pasta shapes awkwardly but lovingly glued around the outside, to make a "frame". I told her I loved it, and it was the best picture ever, and asked her if she would like to go for a milkshake. She slipped her small hand into mine, and said "yes please, mummy".
I didn't see a little girl who, if I was gone tomorrow, would not even miss me, as long as someone was meeting her needs. I didn't see a little girl who I wheel in and out of 4yo kinder in a stroller, who's never skipped beside me, who's never made me a treasure with her own hand. Who doesn't know what a milkshake is, and is some distance away from holding one. I didn't see a four year old that I have never held anything more than a one sided conversation with.
For just a moment, I saw what might have been, and it was so painful that it took my breath away. I have always acknowledged grief as a part of the journey we are on, but this morning it was so searing that for a minute it almost felt like someone had died. Someone that isn't, and can't be, and never was.
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Much love to you, Jules. I understand what you are saying. I have no doubt of your love for all of your girls, but can see that moments like these must at times stop you in your tracks. It's not about not loving her. It's about loving her so much that you feel the loss of what she might have grown into, experienced and shared.
ReplyDeleteOh Jules I hear you...I have done that too....those few words...'what might have been' are so powerful xo
ReplyDeleteThis is such a beautifully honest and powerful post. I really understand what you are saying, even though I have never been in your position. As much as you love her for who she is, the 'might have been' is always compelling and hard to resist. But I don't believe for a second she wouldn't miss you-I've seen the way she looks at you. The conversations might be one sided; the love certainly isn't xo
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ReplyDeleteThank It's human to play "what if", Jules. Thank you for sharing.
ReplyDeletejules, I am so excited I have found your blog again! I have been searching for it! Oh gee those what ifs are tough! I keep looking at woody try to walk and think coop could have been the same....much love to you all xxx bron
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