Holy crap! I think I have whiplash. Is summer seriously almost over?
What?? Seems like here I am again coming here to update over summer starting.. at least I made it before Christmas.
I lay in bed and write the best blogs. Like seriously share worthy. Then I wake up and go to the computer and it is though I am grabbing those words, but I can only grasp a couple letters at a time and they never formulate like they did in my head.
It's been a good summer, but an almost over summer. Modified year round rocks all year, except for summer. I like them home and I am not kidding. There is no strict bedtime, no homework, and maybe it's impending doom of Jr. High that is shadowing me and my feelings, but I can't shake the melancholy. I feel like Oliver going into kindergarten is overshadowed by this awful sense of knowing ...Lily is going to Jr. High.
And once again I am reminded of how much our house/lives/world revolves around Lily. And it isn't bad. It isn't wrong. But sometime I realize, it isn't fair. But I also realize there isn't much I can do about it.
Since 2010 every summer has been focused on something for Lily. From conference to out of state clinic, to hospital stays, we spend our summers focus and money on CDKL5.
In Virginia on the last day of conference we sat in on the sibling panel and I cried. I was tired, yes, tears always overwhelm me when I am tired and also when I am PMSing, which I was also doing, but I think I would have been full of tears with lots of sleep and no extra hormones.
We stayed up and "socialized" every night in the hotel bar. Let me tell you, no one knows how to "socialize" like special needs parents. Can I get an Amen? We need it. So yes I was tired. But something struck me hard as I listened and laughed and cried at these kids who shared what it is like to have a sibling who doesn't speak, who acts differently, who has seizures, who (and most gut wrenching noted) may not always be around. My heart literally ached as I sat there. I thought of the lives our kids live and how not typical it is and how hard it can be. And I know the positives. I state them all the time, our kids are better for having Lily as their sister. But there are serious negatives as well. And they are real and they are ever present and they suck.
At conference I learned a lot, got a lot out of conference, we had a wonderful time, it was incredible meeting families and connecting and sharing and my heart was filled that long weekend, but it also broke. It broke over the connection we all had. It broke over sharing notes on seizures and wheelchairs and heart break. It broke over realizing the world we live in although so normal there among friends who understand, it is so not "normal" back at home. And there is a rawness of understanding the life our "typical" kids live.
Don't get me wrong, it absolutely was a time of hope and connection I can't put into words, but it was also a moment of conviction for my focus at home and a realization for my other kids who may be standing in a corner saying look at me. See me.
Although often it is a screaming over dramatized rendition of a stubbed toe, but tomato tomato. (you are supposed to read those differently, doesn't come across as well in writing).
The kids were great back at home with Grandma, our trips up north were cool, relaxing and filled with good times with great friends. And of course seizures never left our side... well except for when Lily was hooked up to an EEG for 30 hours. Oh then the seizures took a hike, but they were back when the cap came off. Seriously think there is something behind that. But we did get data without a big seizure. As it turns out and I really already knew this, but Lily has a mess of an EEG. Spikes all the time, has seizures that don't even look like seizures and this was all the while I would say she was having a wonderful day. I really wanted to see what her O2 and heart rate do during her big nasty seizures, but I guess it just wasn't meant to be. We will try another med to add to the list of many. And that's all that about that.
It's been a summer. Not too different from Christmas. A whir wind leaving me breathless and spinning. But also focused on claiming back my family. My focus and seriously.. and I mean it this time.. slow down mama. SLOW DOWN MAMA
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