It was Snail's birthday on Saturday, she turned 12. This was a birthday that made me reflect that perhaps the meaning of being a parent is holding in the part of you that wants to run into the bedroom and cry, but instead stays, sitting, holding the hand of the girl while she has another massive seizure. Okay, some tears may have come out afterwards (sorry, family!). But mostly they stayed in. They were tears for her, anyway. For the girl.
Twelfth birthdays shouldn't be about this stuff, the quiet moments in the aisle of the toy store because here you are again, in the toddler and baby section, looking for something that is easy to operate and might provide some therapuetic value, thinking about cause and effect, fine and gross motor, sensory integration. They shouldn't be about worrying that you won't get the meds into the girl because she seized 5 times yesterday and again before breakfast. Or that you didn't have the adaptive switch for her bubble machine after all, and had to order another one and it came in time but kinda made you cry because you were both happy and sad: happy it came and sad beyond any words that
this was the present you were so excited about getting her. Birthdays shouldn't be about about whether you should have presents on the floor or in the wheelchair. Or about how long after getting the presents would she go before having another massive seizure and then spending the rest of the day unconscious. Again. Only to do it all again the following day at her sister's third birthday party.
Oh yeah, this weekend was fucking hard.
We love you, Snail. You are a spark of joy in our hearts. You are a laugh on our lips. You are a "cug" of love, and excited squeals of joy, and resting your head on my leg, and squishing my hand, and being lit up inside with wonder. You are the girl. I just wish, I wish so very very hard, for all of us, but most, most, most of all for YOU, that you were a normal girl.
And I wish that your twelfth birthday didn't include the recovery position. Some days, things are definitely not okay. This was one of them.
4 comments:
Teary here. Much love to you all.
Oh, my goodness. I am so sorry. I feel for you; I know your pain and sorrow and desperation. Your daughter is so beautiful. She crosses her leg EXACTLY like my Sophie. It sort of freaks me out how much they remind me of one another.
Hang in there. Your daughter is on her own journey as well -- you can be with her and help her and guide her but remember that she is on her own journey.
Love to you and wishes for less seizures, no seizures, peace and comfort.
Thanks xx
Elizabeth, Sophie really reminds me of Snail, too! That description in your Balance post about the head turn and arm thrown back start of seizure, that's exactly what Snail does, it freaks me out how similar they are, too! It's somehow comforting to read your blog about your girl who is like ours. That doesn't quite make sense, but I hope you get the gist. There's comfort and understanding in there somewhere...
I wish you the same wishes you wish me, xx
:(
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