We're so used to seeing and living with uncontrolled seizures that when they happen after a period of not-happening, it's remarkable. This past Saturday Sophie did have a big seizure and another one on Sunday. She had gone almost three weeks without one, the longest time in well over a year. We had even had a few days last week where she had no seizures whatsoever. I'm disappointed a bit -- who wouldn't be? -- but I had sort of expected it or at least put up some defenses in the event that it happened. My general philosophy, the belief that sustains me, is this too shall change, and change it did. But the great period without has reignited my hope that we will one day see longer and longer periods without them.
But back to my original thought: today, Monday, Sophie was significantly slower and duller than she had been last week. She was more Sophie-like -- the Sophie that has evolved over the years as the seizures have ravaged her. If you look at photos of her as a little girl, there is still a sparkly light in her eyes and a tipsy smile. I've posted many photos of my beautiful girl and I think all who have seen her and them can attest to the soul bursting out, but I wouldn't call her expression light or sparkly. Last week, Sophie was busy and more alive -- in that light sort of way that stares down at me from our hallway where many photos are posted of the three children through the years.
Today she is moving more slowly and her face looks a bit fallen. I don't think it's my imagination. What I realize is how much her personality is defined by those seizures and how heroic she is to get up every day and just live. It's as if she is buried under layers and layers of muck on these days -- and because these days have been happening so often, days into weeks into months into years, we've all gotten used to that. When she -- and we -- had a respite, she shone.
And what that's done is give me a renewed compassion for her and for those difficult times.
And when these difficult times pass, I will be sure to be grateful for the light.
Oh, I love this photo. I've not seen it before; it's beautiful. Both of you just shine with gentleness and joy in the moment.ReplyDelete
I am sorry that Sophie's hiatus from seizures has been interrupted. Yet, that hiatus gives me hope that there will be other periods like it, when Sophie will enjoy freedom from seizures, and you will enjoy it with her.
She is so very beautiful. My heart breaks for the heavy load that you bear with her, and yet, there is so much love in your writing, and with it, hope...XO
I know what you mean about the muck. It's a lot for these kids to work through. But when it breaks out, man, that's some good stuff. Glad you and Sophie got to have some recently, and here's to another upswing.ReplyDelete
Hoping for more free days--for you both.ReplyDelete
You are giving her the most precious gift you could possibly give outside love: you are seeing her.ReplyDelete
You are right to believe that you will be able to bring more and more healing in to Sophie's life in this manner. As you move through the various remedies and bring opportunity for Sophie's brain to rest and restore itself, you can reasonably expect to see the time periods between major seizures to compound in length. I like the BioMed parents who make 7-10 year plans for their autistic kids' recoveries. It seems like a long haul, but it is a reasonable and fundamentally short time span in a human life. Worth every minute in my estimation.ReplyDelete
I agree with Maggie May. My God, what a mother you are! And if there is anything stronger on this earth than a mother's love for her child, I do not know what it is.ReplyDelete
I love this picture...you both are sparkling.ReplyDelete
I am crying,ReplyDelete
please know that it is because you shine too,
I am sure your beautiful daughter feels those sparks into the core of her precious soul. It lets her radiate pure on her free days.
She is very inspiring! Beautiful photo!ReplyDelete
She'll be back. She'll fight her way back through.ReplyDelete
What a photo of the two of you! Beautiful girls.ReplyDelete
Hoping for more good weeks.
Thinking of you.
A beautiful photo of you both! I too live by "this too shall change". It comforts me when times are hard, and keeps me in line (for better, for worse) when things are going well. I'm sorry the big seizures came back. I hope that this is just a blip and that you go back to fewer big seizures, so Sophie can get out from under that muck and shine shine shine again!ReplyDelete
I love this photo .... and that you have both memories and hope to go on. I hope for more and more respite and relief in the days to come ......ReplyDelete