If you could just say a little prayer for Vicki, I would appreciate it. She is struggling. So much. And it is heartbreaking to watch. I've been kind of a mess all day, well, heck, all month. I feel so helpless. I feel so confused. I feel so much pain for my beautiful little girl.
But what's the point in lamenting in it if I don't do anything about it, so I have been plugging away at my to-do list. I was fortunate to be able to get Vicki an appointment with her neurologist for this Friday. At least that's something. I've been talking and emailing, and calling, and thinking, and crying, and .... all day long. So maybe... maybe on Friday... you have to start somewhere. And I think the neurologist is the most logical place to start.
Today was horrible for Vicki. It is so hard for me to describe. It's like I can see physically the internal struggle that Vicki is waging against herself. And one of the hardest things is to watch Vicki get lost in it. I just want my little girl back. The happy little girl with eyes that sparkle and a voice that sings and an energy so contagious that makes me want to burst with happiness when I am with her. To watch her struggle with absolutely everything. Everything. Getting out of bed, walking down the stairs, getting into and out of the car, sitting on the potty, taking a bath, getting out of the bath, putting on her shoes, walking into her classroom, transitioning with anything, eating, working, playing. Oh there are glimpses. And there are times where she is Vicki. But there is no question in my mind that there is something medically going on. And dammit, I am going to fix it. It's odd to want it to be medical, to want it to be neurological, to want an explanation for this. Because I have to believe that everything she is going through is not strictly behavioral. So many things are affected so globally, I don't think Vicki can manipulate it all at the same time. The yelling, the really odd echolalia, the motor planning, it can't all be Vicki acting out and trying to control her environment. Because if it is, I really don't know what to do. Trying to figure out some of her behaviors has been exhausting. It took over 20 minutes for her to get out the car this morning after we dropped Joey off at school. It took prompting and prompting, physical, verbal, everything. Every piece of getting ready was a struggle. And quite frankly, I don't know how so many people do it. Day in and day out. You know those people who always seem to be 'on', always seem so energetic, so reinforcing. All I think sometimes is, please not now. Please don't do this. I beg her and plead with her in my mind, I will her with everything I have to just put one foot in front of the other, to just bend her knee and put on her pants, to just keep going.
It took Vicki over an hour to walk from our van into her classroom this morning. I could continue to list the times for you for how long it took Vicki to do things today, and try to describe in greater detail little things I see, but after talking about it and writing about it all day, I think I'm done. Now there are glimpses of Vicki, she did ask to go potty, got excited when I asked her if she wanted corn dogs and mac and cheese for dinner and asked Joey for 'Dancing in the Moonlight' on his MP3 player. But there is so much that is not Vicki. Sigh. I feel like the balloons I tossed today from Ally's party on Sunday. Deflated. :(
That's enough of a pity party tonight. Done. Over. Tomorrow is a new day and then the next day we go to the neurologist. Cross your fingers.
I can't end tonight on this. It's too depressing. Let me tell you about a few amazing things. Friends. Friends are amazing. Really. Truly. Amazing. Teachers. Teachers are amazing. Really. Truly. Amazing. My mom is amazing. Really. Truly. Amazing. Joey is amazing. Really. Truly. Amazing. Ally is amazing. Really. Truly. Amazing. My husband is amazing. Really. Truly. Amazing. And Vicki. Vicki is amazing. Really. Truly. Amazing.
Words of encouragement, words of wisdom, acts of kindness, lending a hand. I hate asking for a hand. But when one reaches out to me, it feels amazing. My friend helped me out getting Ally to soccer practice tonight because Vicki was having such a hard time. And we were talking a little bit. She was telling me some of the things she has told her kids about Vicki and about autism. I've always noticed that her kids, anytime they see Vicki, will stop and say hi to her, 'Hi Vicki' and wave at her. And Vicki (although sometimes has to be prompted) always says hi back and waves. That means the world to me. Again, it's the little things.
Joey wanted me to go on his field trip this Friday (I was shocked, because he IS a 6th grade boy!) and while we were talking and waiting for Vicki to come out to the van after school, I told him that we had to take Vicki to the neurologist this Friday. And without missing a beat, he said, 'I understand mom. Don't worry about it. I want Vicki to get back to normal.' And I thought that his choice of words was so cool. Vicki getting back to normal. Vicki getting back to Vicki. He knows. He understands. He gets it better that I do. It makes my heart want to burst.
was for Vicki to get out of the van when we got home...) , 'Look at my prinsss book soon but she must be karfl with it.' Her new princess book she got from a friend at her birthday party. She was ready to give it to Vicki and share. And she did. She knows Vicki really really likes it. She knows. She understands. She gets it better than I do. It makes my heart want to burst.
And for my Vicki. My heart is singing for and to you tonight:
I'll be there for you
These five words I swear to you
When you breathe I want to be the air for you
I'll be there for you
I'd live and I'd die for you
Steal the sun from the sky for you
Words can't say what a love can do
I'll be there for you
And thank you all for being there for me. xoxo
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