Schuyler's case has always seemed to me to be the Fairytale of the PMG world......at least from the seizure point of view. She's been my beacon of light. I tended to think about the possibility of Ayla and seizures and then think, "Schuyler's 11 and she hasn't had any yet. Ayla might be lucky too."
And then tonight I read Rob's new post. And tonight I'm thinking differently. Tonight I'm thinking.....
"My beacon's gone and that fucking monster is coming for my kid".
And now there's nothing left to do but let the tears of realisation fall.
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9 comments:
You said it best
"Oh Fuck"
xxx Jen
I choose to stay hopeful - just let the fucker try!
Oh Lis darling,
Can't we please believe that she is in the 10%. We've expected miracles for so many years now, can't this be the miracle.
How about thinking of the flipside, that doctors have 'opinions' and statistics mean nothing, I try to do this with Huds anyway, that he has CP an his hips should be outta socket and he should have scoliosis by now, but we have ABR, and he used to have terrible epilepsy but now none thanks to the SCD, Ayla has an awesome diet, and mother and stats change over a period of time, maybe these 10/90 stats are from the 50's! Hang in there, spend some more time in the sun, you haven't crossed that bridge yet ;-) and if that doesn't help give her a squeeze and realise she hasn't changed a bit from before you read Schylers update, and if that doesn't work try wine! ;-) Love your blog, hope your ribs and sternum are healing, your guts are settling and you have some perfect weather heading your way!
Ah Chris...you are the sunshine girl :). 24 hours gives lots of perspective and I know that Ayla's chances of developing seizures hasn't changed from yesterday.....its just the unknown that sometimes leaves me like a deer in the headlights.
The news about Schuyler was a big shock yesterday.....who knows, Ayla might have to be my new PMG Fairytale :)
The thing to keep in mind is that we're a long way from actually having confirmation of seizures. I'm still holding onto the same hope as well, that we'll have a place in the Ten Percent Club. Crossed fingers for all...
Oh, sweetie. That brought tears to my eyes. Shit, I keep typing then deleting, and finally realise I don't know what to say. Keep the monster at bay! From what I can see and from the smidgin of understanding that I have, you seem to be doing a great job so far!
@Rob....I hope you're in the 10 percent club too. I hope lots of us are and that the 10% grows to be 20% or more. I think the thing we also have to remember is that this condition is still relatively new and the research and statistic gathering still continues....who knows maybe it's not 85 - 90% anymore.
Fingers crossed Rob....we're thinking of you, Julie and Schuyler.
@Nettie....Thanks Lovely. It's ok to not know what to say. There really isn't anything to say at all. I write when the moment takes me and I write what's in my heart. And on that day, at that moment, fear and sadness were in my heart.
24 hours can give perspective and I realise that nothing has changed with Ayla....we're still in the same shaky boat with no destination in particular in mind. As much as the idea of seizures is scary, I can't live my life being frightened every day. I'll just have the occasional day of fear and then pick myself up and carry on, business as usual. I want Ayla's life to be fun and full of beauty and joy.....not worry about what might happen.
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