Hi!!!!! Because the month of April is fast approaching and I am gearing up for year 5 of this blog... I wanted to get back into the swing of writing. I never finished last year's posts. (And I really hate to leave things undone!) To be honest, it has been harder and harder for me to write and open up. I want to write with honestly and really share Vicki with all of you. But sometimes I can't even put into words how I feel. And when I do, it's heartbreaking all over again. I experience things once with Vicki and then relive them in my mind and my writing over and over. And I feel like I just come off whining or wanting pity. And I don't like that feeling.
Being completely honest... this has been a really hard year. I don't want to sum it all up right now... because if I try to, I will just quit writing after a few minutes and never publish this post. So I will tell you how things are going right now.
As a mom... no matter if your child has autism or not, sometimes you just get that feeling in your gut, like something just isn't right. I have that feeling. And I've had that feeling for some time now... and it keeps getting stronger. Sometimes I think about things so much and dissect Vicki's behavior so much, that it consumes me and takes over my life. Yep. That's about where I am right now.
Sometimes it's big things that happen that make my mommy senses tingle. For example, Vicki has been sick a few times this winter. She hardly ever gets sick. She is usually my 'healthy' one. But she's thrown up .. back in January and again this past week. Sure, she could have just your average, run of the mill, stomach bug. I am probably overreacting. But I always look deeper. I don't know why... maybe because she can't tell me what she's feeling. But something just doesn't add up to me. It's all of the little things. Little changes in behavior. I will just sit and watch her. And when you watch close enough, for long enough... something is different. Or I am just going crazy. Autism can do that to you. ;)
I don't really know what's wrong. There could be so many things.... She's been crying so much lately, especially the last few months. Crying. A. Lot. And it's that heart wrenching cry where she screws her face up and just sobs... oh it kills me a little each time I see it. Yes. I know she will be 13 in May (yikes!!!) and that it's perfectly natural for teenage girls to cry a lot. I just feel like it's more than that.
And with her PANDAS... over the past year it's been a roller coaster... she'll have a flair up and then things seem like they are settling down and chugging along. And then, another bad spot. We are back to difficult transitions. Like 2 hour transitions.Transitions so hard we are fearful when she goes to sit down somewhere that we won't be able to get her up again. And we can't. Could it just be her acting out? Just wanting to control something in her life? Yes. It could be. But I just feel like it's more than that.
Her OCD has been very difficult at different times this past year. So much so that she would add little things to her day like tapping her foot 100 times before she took her medicine, or turning the pages of a magazine so many times... Eating got to be so difficult. 2 hours for her to eat. It all ebbs and flows. She follows her routine to a T. She needs it to function. And sometimes the only way for me to get through one certain activity was to mess with her OCD... start doing something else in the wrong order or the wrong way, so she would move on. And you know what scares me now?? I did that the other day, and she didn't care at all. Not. At. All. And that is highly unusual. I should be celebrating that... but instead it's another thing I can't stop thinking about.
And her body posturing.... she hunches over so much. And she's been grabbing at her chest a lot. Maybe she is just noticing things more... or she is just more sore, or growing.... But I think... is it something with her medicines? She takes so many of them. I hate it. Does she have heartburn? Is her stomach upset a lot now? I don't know. It's just so odd. And yesterday she asked for dentist and ice cream. I had her look at some of her visuals just in case she messed up the word... because usually we pair ice cream with a successful blood draw. And sure enough... she chose the blood draw visual. Is that her way of telling me something is off and she knows it? It really freaked me out. Or, it could just be that she wanted ice cream. ;) Or that she knew we had to get blood work done sometime soon. (Which we did.) So we took her today to get it done. At least maybe that will shed some answers on this. But it's so hard because even though her team of doctors knows everything that's going on with her, it's hard to investigate things with her.
Well, that's all I have tonight. I have to sit down and write some more updates to Vicki's doctors so we are all on the same page. I am anxious to see what the blood work shows. Anyway... thanks for listening. It felt good to write some of it down. I'll be back again soon. I plan to finish up the last 6 posts before April starts.... I will let you know what comes of all of this. Until then, I would really love for you to keep Vicki in your thoughts and send a few extra prayers and lots of love to her this week. I wish we could just go and see Dr. House. ;) I really miss that show. (That was random.) xoxo
