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