Year 2. Plus 2.

Of course I had to write again tonight. The greatest thing about writing is that for me, personally, it is free therapy. :) I wonder how many hours of 'therapy' I have logged so far? See baby, I AM frugal!

Gosh, I feel like all I have been saying lately is 'today was rough'. So I think I'll try something different today. And here it goes... 'Today was really rough.' :(
Bleh.

One of the harder aspects of all of the recent changes in Vicki, for me, is the unpredictability. Yes, kids are unpredictable. No one ever really knows when something is going to happen. And Vicki has always been unpredictable. But now, it scares me. It scares me to the point of not wanting to do anything at all, not wanting to go out at all, not wanting to try activities at all. Not wanting to do the things we usually do. Because I just don't know. I am used to seeing some sort of sign from Vicki, something that clued me into being a minute or so from a major meltdown. Or certain things that would set her off or make her nervous. We can all see little things in our kids faces, things no one else sees. But not now. I can't see them with Vicki right now.

I hate the fact that I dread just about every task right now. Because I don't know how she will react. Will she skip around and sing? Or will she sit frozen, scared and screaming?

5 hours. That's how long it took for me to get Vicki out of the van this am after we dropped Joey off at school (3.5 hours for that) and then 2.5 hours to get her upstairs, showered, dressed and back downstairs eating breakfast at 2 pm. Wait. My math skills need work. That's 6 hours. ;) But, you see, it's everything. I feel like I have tried everything. I feel like I am racking my brain to try everything and anything. And the really hard part is that I don't know what I am fighting against. I don't know what is going on inside of Vicki. I don't know the function of any of the behaviors that she is having. And I don't have answers. Or clues. But I do still have hope and faith.

When I have days like today, well, I've never had a day like today... But when I have days when there are significant challenges... I always think to myself, I never appreciate enough everything that usually goes so smoothly. Like getting out of the van, like going to the potty, like taking medicine, like me combing her hair, like getting her dressed, like taking her to school, like being able to pick up my kids from school, like her picking up a Capri sun and drinking it..... It all just happens. But today it didn't.

Vicki didn't get out of the van, go potty, take medicine, comb hair , get dressed, go to school, drink her Capri sun. Well, she did eventually get out of the van, go potty, take her medicine, I combed her hair, got her dressed and helped her drink her Capri sun. But she never did make it to school. And I never did get to pick my other kids up from school, stupid dead battery in the van. Really?!?! Too long opening and closing the van doors and lights today, I guess...

Everyday I'm baffling. Yep. That's my new word of the day. Come on... Everyday I'm baffling... du-ta-du-da-ta-du-da... I don't know what I would do if I couldn't laugh at myself.

But seriously... I keep saying that Vicki wants to do whatever task it is. She really does. I can see it in her face. And she answered my questions this morning. But she couldn't move out of the van. What is stopping her? She gets rigid, I can't pry her legs out of criss cross applesauce style. I ask her what she wants to do. She tells me, 'Take a shower.' But then she can't get out of the van. What the heck is holding her back? Now, I could, if I really had to... muscle up and let adrenalin take over and get her out of the van. But that wouldn't help anything and I don't want to put her or myself at risk for injury.

Do you want to know what finally got her out of the car? I tried everything I could think of for 3.5 hours. And this is what worked. We had done a sticker puzzle in the van together. She loves puzzles and stickers, so she liked the activity a lot. Anyway, there was garbage from the stickers. And I crinkled up the piece of paper and sat it on the floor of the van. Vicki said to me, 'Mommy. Trash.' And then I said, 'No. Vicki. Trash.' and pointed to the garbage can inside. And she kept saying to me, 'Mommy trash. (No, I'm not!!! ha ha....) Mommy go. Mommy trash. Mommy walking. Mommy black trash (the trash can is black). So, on a whim I tossed the trash onto the garage floor outside of the van. And I walked away. Well, that really bothered Vicki. A lot. And finally she jumped out of the van, picked up the trash, sprinted inside and threw it in the black trash can. Success!!!!!!!!!!!!  I blocked the door to the garage and praised the heck out of her. And then of course it took another half an hour to get her upstairs. But. Still. Celebrate. Celebrate it all. Because it is soooo worth celebrating!



And then tonight before bed she was skipping around and smiling. And at bedtime she serenaded me with one of her favorite songs, Rocket Man.

And all this science I don't understand...

Oh, no no no. I'm a rocket man.

Now I think it's gonna be a long long time...
And i think it's gonna be a long long time...

If you could tonight... just send Vicki a little bit of love.
Here's to hope for a skipping and singing Vicki in the morning.
Thanks again for listening. xoxo
Oh, and I am open for suggestions! Anything! Anything at all! We are tossing around a lot of stuff right now, waiting, testing, searching... I will keep you posted.

Year 2. Plus 1.

I can't believe it's been 21 days since I last wrote. So many times in the last few weeks I have wanted to sit down and write. And for 21 days, I didn't. I don't know what made me tonight. No, that's a lie. I know exactly why I am writing tonight. Because I need to. Because I really, really needed to.

It's been a rough May. :(  Every day is so different. Every day I get more and more confused. Vicki's behaviors mystify me. Scare me. Leave me heartbroken and crying. Leave me helpless and afraid. All I know for sure is I really just don't know. And quite frankly, it sucks. I feel like we are hanging in some odd kind of limbo. Not sure how to proceed. No one seems to have any answers.

So, this is very off the wall. But does anyone watch House? Besides the fact that I think I have a massive crush on either Gregory House or Hugh Laurie. I'm not sure which one. But I've watched House forever. Well, for 8 seasons to be exact. And tonight was the series finale. When House first came on the air, we were just diving into the world of autism, just dangling our feet in the water. Wading through the initial testing. How appropriate that tonight House ends. And I feel like we are back there again, wading through testing, different kinds now, but testing just the same. And now we are drowning in the world of autism. I can remember thinking, wow... I wish I could take Vicki into see Dr. House. He would solve the puzzle. He would find the answers we were looking for. And it would probably be sarcoidosis. :)  It seems like every episode of House had one of the doctors saying sarcoidosis. :) And here I am tonight, wishing more than ever that I could take Vicki in to see
Dr. House. But I'm not sure if he could even solve the puzzle of what's been going on the past 7 weeks.

Tonight I didn't post to talk about all the the different things and behaviors that have been playing out like an episode of House. Maybe I will another day. And I didn't post to talk about all of the doctors and tests and hospital stay she has gone through the last few weeks. (I am still waiting on results for some stuff anyway... I will do a post soon, hopefully, on that...) I didn't post to talk about Vicki's recent birthday. I didn't post to talk about everything Joey and Ally have been going through the last few weeks watching what has been going on with Vicki.

No. I posted because I was heartbroken tonight. And I know it's a stupid thing to be heartbroken about. But, I am. I cried and cried and cried. Today was Vicki's last day at therapeutic horseback riding. For now.

For those of you who read my blog last year, you remember how much I used to post about horseback riding? Vicki loves horseback riding. She loves the horse she rides, Tiger Lily. She loves the barn. She loves the cats and dogs and chickens there. She loves giving Tiger Lily carrots. She loves wearing her pretty green riding boots and black velvet riding helmet. She loves going on little trail rides with Tiger Lily. And oh my gosh, she loves it when Tiger Lily runs. The smile on her face when she is on that horse and it is trotting fast. It takes my breath away. Vicki lights up. She loves going horseback riding. She loves her Mondays. (and last year it was Wednesdays). When she sees that horse visual on her schedule, she gets so excited. She always asks for 'piggy tails, Pochontas' on horseback riding days. (2 side braids).

I guess it's only been 2 years that she's been riding. But it seems like forever. And today, I made the decision to stop. For right now. I am going to keep saying 'for right now'. Because in my heart I know she will ride again. In my heart I know she will. I know she loves it. And it killed me today. We went to the barn and she couldn't even ride Tiger Lily. But I know she wanted to. But, along with so many other facets of her life right now, Vicki just couldn't. There is something stopping her. I don't know what it is. She wants to do it. She can pick her feet up to step up on the step ladder. I can't even explain it. Whatever is going on with Vicki, it's so hard to explain. And it's heartbreaking to watch. There is a hesitation in everything she is doing. Something is getting in her way. Even with people helping her, she couldn't get on the horse right. And even though this horse is an amazing, well trained animal, it is no longer safe to have Vicki on the horse. Vicki is too unpredictable. And I don't want Vicki to hate it. It has always been a place where she would go to smile. And now there is anxiety. There is anxiety with everything. I don't want it to be a fight. But Vicki is fighting. There is a war. And it is going on within Vicki. That's the best way for me to explain it. She wanted to ride so badly. I could see it on her face. I could hear it in her cries the whole way home. I know it's been getting harder and harder, and I just needed to see it for myself today (usually one of Vicki's therapists take her). And Vicki couldn't ride. It was horrible watching her struggle so much. I hated that it took 3 of us to get her back to the van. I hated that she kept screaming horseback riding, yes, Tiger Lily. It was raining the whole way home. Even Mother Nature knew.

It isn't just horseback riding. It's everything. It's eating. It's walking. It's talking. It's eating. (I said it again, because for those who know Vicki well, know that she loves eating. She loves all things food.) And it is horrible to dread meals with her. But I do. She can't even bring her fork to her mouth without someone hand-over-handing her hand and the fork. And when I say she can't, she can... she has the capability, the motor skills to perform the task, but she can't. And I don't know what to do.  She can't transition well. She needs someone to touch her. She needs me. And I need to help her. And I just need someone to help solve this new set of puzzles so we can get our Vicki back.

Sorry this post is so heavy. And thank you for listening. I really appreciate it. I will post again when I know something. Well, maybe I should re-phrase that. I may never post again if I only post when I know something. :)  I will keep questioning, keep searching, keep hoping. And I will let you know if I can get an appointment with Dr. House. :) 

Just because I find it so hard to end on such a sad note, I want to tell you something. Joey made my night tonight. He is a smart kid. He knows when mommy is hurting. And tonight as the kids were playing in the room after their dinner (of soup and shrimp poppers), my husband and I had a late dinner at the table... I slaved over it for hours... I cut open the bag and warmed up a bag meal. :)  Don't knock those bag meals though... they are yummy... and tonight was steak and portabello mushrooms and pasta. With leftover focaccia bread. And Joey comes out and lights a candle for us. And asks if there is anything he can do for us. And my husband said, 'serenade us with Belle Notte, from Lady and the Tramp'. And he runs out of the room, I thought it was because we asked him to sing, but he had gone in the other room to you tube it and play it for us. :)  So in the midst of everything, there was a moment.

Side by side
with you're loved one
you'll find enchantment here
the night will weave its magic spell
when the one you love is near

Oh, this is the night
and the heavens are right
on this lovely Belle Notte

And with that one little gesture, Joey reminded me what it's all about. :) And as long as we all have each other, it really is a lovely night. It's all about a series of moments. It will all be ok. And Vicki will get back to horseback riding. I know she will. She's just (to coin a Ross phrase from Friends), 'on a break'. xoxo