Day 11. Year 6.

11/30 days writing for the month of April. 37 %. (And, yes, I needed a calculator to do that math. Ha.)  Eh. Not my best showing. Don't worry though.... I will keep writing for a while yet... please keep checking back. I may be able to get the rest done in May. ;)

I shared an article on my facebook page the other day. It was from a site called The Caregiver Network. It actually struck quite a chord with me. It's no secret that I've been struggling a lot this past year. The last thing I want to do is 'burn-out'. I have a lifetime of care-giving ahead of me. I can't burn out now.

I guess I'm writing about this tonight because I was thinking about it a lot today. I know I sound like a broken record... but this past year has done quite the number on me, on Vicki, on my husband, and on Joe and Ally. You never realize how fortunate you are -- being about to get in a vehicle and go for a drive, go do things, interact with the world. Until you can't anymore. We've always done things as a family. It wasn't always easy and things didn't always go well, but we kept trying.

And I think that's one of the things that makes me sad. I feel like I've stopped trying. Like tonight... it's been a really long week with both Ally and Joe having had the flu. Sometimes I feel like the walls are smothering me. And tonight my husband kind of suggested we all get in the car and drive down to Costco since the kids were feeling better. (And in a way, that sounded heavenly.)  But then we exchanged looks with each other, and quietly decided not to try that. And it broke my heart. But it's easier not to try. One big reason is for safety. And that's something we are constantly aware of. At what cost do we put Vicki through trying to get in a vehicle? We worry both about the safety of Vicki and the safety of my husband as she is fighting. And then IF we were to get her in... then what? I would sit in the car with her while my husband and other kids went into Costco. And then we would have to struggle again to get her out of the van at home. And who knows how long those transitions would actually take. So it's easier to not try.

I've seen such a change in me too. It's easier to just keep my sweats and old t-shirt on and not bother trying to fix myself up and make myself 'presentable'. Sad. I know. It takes everything I have sometimes to do that.

Even though sometimes I feel like the walls of our house are closing in on me... it's an odd sort of comfort. I'm safe here. I'm used to it here. It's easier here. It takes everything I have to actually agree to go meet someone for a cup of coffee and girl talk when Vicki is at school. And that's the only time I can get away. And even then, it's easier not to. And I know that's dangerous.

About a month ago or so, I was able to take Ally to a function at school for about an hour one evening. It had been quite a while since I had done that. It was hard. I'm not quite sure how to describe it. Again, the author, Zachary White, from the article I read entitled "Inside Out" summed it up pretty good:

I watched others. They lived their lives.

I overheard their conversations. They talked of upcoming holidays and family reunions.

The more removed from others we feel, the more reasons we find to stay away from others.

The more we feel separated from others, the more reasons we find not to get out of the house and spend time with others.

The more removed you feel from others, the more strange it feels to be in the company of others.

I didn’t want to fake it anymore.

So there I was, out in the world. And I had so much trouble. I plastered a fake smile on my face and when acquaintances I knew asked me how Vicki was doing... I would pause. Do they really want to know? Or do they feel awkward  around me to and it's just something to fill the air? Do I smile and lie? Or do I tell the truth? Most of the time I would say, 'She's struggling. But we are working through it.' But sometimes what I really wanted to say was: 'It's so hard. It's so hard on our whole family. We can't go anywhere anymore. No doctors know how to help her. We've had to stop everything she used to love and do. I can't even pick my other kids up from practices anymore.' 

So, I sat down in the corner and watched Ally interact and have a good time. I texted my husband and I texted my friend who stays up with me until 2 in the morning and knows and understands how hard this is. How hard it is to go out and try to be 'normal'. I just wanted to run back to the safety of my house and my walls and my little family and shut the door. And text my friend in the middle of the night crying. 

Sheesh. This sounds so horrible. Don't worry. I am a fighter. I find ways to mend my spirit so that I can continue to be strong for Vicki and for my family. But sometimes, like tonight, I like to be as honest as I can be. We all have struggles. We are all care-givers to someone, in someway. We all need to take a moment and regroup and recharge. It's not easy, but I find my ways. I hope you do too. No one has to be truely alone in this world. In some little way, I hope my blog helps someone out there, just a little bit. To know that even though our circumstances are all different. I am here for you, just as you all are here for me. xoxo

Day 10. Year 6.

I thought I would share with you tonight the kinds of twists and turns my mind takes on a daily basis, especially after reacting to local news happenings. This world we live in is a scary place. The point of my post is not to dwell on this or discuss politics or anything of that nature. It is simply a starting point to discuss one of my deepest fears.

Today there was another bomb threat at a local middle school in our county. Luckily, the building was cleared and all of the students/staff/responders were safe at the end of the day based on the reports that I saw.  This has been happening with much more frequency, it seems. This school is in lock-down, that school is being evacuated. It's scary stuff. Our world is a scary place. You never know what is going to happen. Nothing is guaranteed. I can't imagine the fear, the terror, the everything, that people in those situations must feel,. That loved ones in those situations must feel.

But I think about it. As most people do I assume. After 9/11... kissing a loved one before going to work, before getting on a plane... it took on a new meaning, didn't it?  After Columbine and Sandy Hook... pulling our kiddos in closer for a tighter hug, and a few more I love you's... right? Pausing for a moment before you went to the movies, or even to a sporting event... It's there.

But today, today what I was thinking about... what if it was Vicki's school that was being evacuated? In this world today, what if's don't seem so out in left field anymore. A few middle schools in our county have had bomb threats made this year. It could have been Vicki's school. It could be anyone's school.

I don't want to make it seem that my fear is any more important than your fear... fear is fear.

But I talk about this particular fear every time I walk into an IEP meeting for school and we discuss Vicki's list of 'accommodations'. We discuss it when we talk about fire drills. But we never discuss it to the degree that lessens my fear. I'm sure nothing will ever really lessen my fear.

Now, I've never worked in the school system or in the police department or fire department. I have no idea what it takes... what people do behind the scenes to execute a successful drill, or a successful emergency plan. I trust these people. I know they will do everything in their power to keep our children safe.

I'm having  a hard time figuring out how to say what I want to say. So, let me just give you examples.

One of Vicki's accommodations is to have one of those chairs with wheels in any room that she is in at school. I'm sure one thing you've gathered about Vicki, and about a lot of children with autism, routines are followed. And if there is a hiccup in a routine, well, you never really know how Vicki will react. And I know you can't plan for every scenario. BUT I want to. It's in my nature to. Fire drills have historically been very difficult for Vicki. No child likes that sound, being disrupted, made to go stand out in the cold in a line for who knows how long... But with Vicki, she would drop to the ground. She would freeze in place. She would not follow simple directions. And the older she got, and the stronger and bigger she got, the harder it got. Enter the chair. Vicki would sit on the chair and her aide/teacher would be able to wheel her out. Until that stopped working. It can be so difficult now, especially if Vicki is having a really bad day, to even get her physically up and sitting in the chair. And if she gets in the chair, she knows how to brace herself in that chair so that it doesn't wheel.  I've seen this firsthand. That day back in October when I had to pick her up from school to go to the ER. I think there were at times 5 people trying to wheel her out to my van. She never did get into the van. Granted, this was not an "emergency situation" per say, but Vicki was sick and we did need to get her to the doctor. And for that hour plus... we had the staff to try to help her. But it didn't work. There was another time when her teacher was out of school for the day and the sub had to endure a fire drill with Vicki. It did not go well. What if the people that were needed to physically pick Vicki up and move her (if that was even possible) were not available? Then what?

A few weeks ago, there was a sub bus driver taking Vicki from school to home at the end of the school day. Vicki ended up being about 20 minutes late that day because it was not her usual routine. The bus didn't stop at the exact spot that her normal bus did. There were little things that weren't the same. Who knows what affected Vicki. The sight of a different person, the subtle changes in routine, a different voice greeting her, having to walk a few more steps... who knows what it was. But it affected her. And honestly, this happened a few weeks ago. Her regular bus driver has been back for a long time now, but the routine that had changed that one day has caused a ripple effect for Vicki. She began a different OCD routine based out of her anxiety. And she is still struggling to make that transition. Last week one day, Vicki braced herself on the outside of the bus and it took quite a bit to get her on the bus. She came home with a slightly scraped and bleeding knuckle. Then even this past Monday, she continued to struggle with that transition and came home with another fresh scrape on her hand.

And these little instances are when there is no massive school wide panic. This is just Vicki struggling. This is autism. This is OCD. This is anxiety. This is PANDAs. This is a girl who can't transition to her normal bus at the normal time with her normal bus driver anymore because of the instances of one day. And this is a special needs bus. There are many accommodations that Vicki is privy to on it.

I can't imagine what it would be like for Vicki.... it scares me to the core of my being.... What would happen if Vicki's school had to be evacuated? What would happen if Vicki had to get on a different bus, with a different bus driver, at a different time, with different children. In mass hysteria.

So, for the frightened children that were being evacuated today from that other school... they had 4 transitions that they had to do. Right? They had to get on a bus, get off a bus and walk into another school, get back on the bus, and get off the bus and go back to their school. I seriously can't imagine what would happen with Vicki. Each of those transitions could feasibly take hours.

I know that I've been assured that Vicki would be safe in any kind of an emergency. And they would do whatever they had to do to get her to safety. I have heard of the massive amounts of endorphins that kick in during a fight-or flight situation. And the super human strength the can ensue. And I know that Vicki would not be left. But I can't help but imagine what it would take.... with all of the panic around... what it would take to get Vicki from point A to point B. It scares me. A lot.

It is definitely a scary world out there. And autism has made it even more scary for Vicki. And for me. Yep. I am afraid of autism.

Day 9. Year 6.

Well, I managed to write 8/27 days so far this month. Wait, I take that back. 2 of those days were Ally and Joe. Man, I sucked this year.

Want to hear my excuses for not posting? I have a lot of them.

• I started writing my *Day 9* post a few weeks ago. But it was one of those hard posts. I was trying to answer some questions I've gotten recently. About the future. And that's hard for me So I kept putting it off. I would write a sentence or 2, cry, then save it in the draft folder. That happened for about a week.
• Then I decided that I needed to post about something, so I changed gears. And I started writing about me & my feelings, especially my feelings this past year. And that was hard for me. So I kept putting it off. I would write a sentence or 2, cry, then save it in the draft folder. See a pattern? 
• Let's see. Then Ally turned 11. I think this may have been my last year for taking cupcakes into school for her. :( I'm guessing they don't do that much in middle school. 
• Then we had some landscaping done at our house, 14 years in the making. 
• Just when I was 'ready' to sit down and write again, Ally had her birthday sleepover party.
• And then the day after her party, she got sick. And has been sick ever since.
• So, now I am armed with Lysol. Ally and Joe both tested positive for the flu. And Ally has bronchitis. 
• I never seem to finish anything anymore. And that bothers me. 
• I think I feel like I always need to write something that has meaning and purpose. I don't want to waste anyone's time. But sometimes my brain lacks meaning and purpose. It's just going on auto-pilot. You know? 

I'm exhausted tonight. Yet I can't sleep. I hate those nights when your brain won't shut down. 

Last night I was all stressed out about the kids and the flu. And worrying about them. And then I was sitting at my nightly duty station. Parked right outside the bathroom on a folding chair peeking in on Vicki. I think I told you a little about her bathroom struggles at night. It's been happening since about November. Some nights it only takes about 15 minutes for her to sit down and go to the bathroom. Those nights are such a rarity and a treat. Some nights it takes 4-5 hours for her to sit down and go to the bathroom. Those nights are hard. Really hard. Most nights are somewhere in between. I never know until it's done what the time frame is for Vicki. Last night was a bad night. It took her until 1:30 to sit down and go to the bathroom. I think that plays into why I haven't been writing much this month. Sometimes it takes everything I have in me to walk back down the stairs after a particularly long and draining night with Vicki. I don't have it in me. You know I really want to talk about this bathroom thing. But I also really want to put up a post. Even an incomplete one. So I will stop there for tonight because I hear someone up. So I'm going to go check in on my sickies. 

Much love to you all. Thanks, as always, for listening. xo

Day 8. Year 6.

So, tonight's Joe's night. And how fitting. Facebook told me that it's *siblings day* today. Cool.
And in true Joe fashion, he was procrastinating on writing something up for me. He went to see the new Batman/Superman movie earlier today with his Dad, and then this came up, and that, and then something else. He finally went to write something up on his computer and he was going to email it to me. How convenient that his email crashed. Hmmm. Interesting. Very interesting.

Anyway, instead of making this a huge argument with my teenager, I decided to leave it alone. I wanted it to be something that he wanted to do. Not something that he felt he had to do, not a chore. I wanted his honesty and his thoughts. So I decided to go about it in a different way.

He's in 10th grade and is taking an Honors English course this year. He has a year long project that he is doing; he had to research and write papers using different literary genres on his topic of choice. You guessed it. His topic of choice is autism. I think that speaks volumes about Joe. Not only does he live with autism on a daily basis at home, he wanted to learn more and educate others more in school about autism, and specifically Vicki's autism, as well. He is constantly reviewing articles and submitting new pieces of writing for this project. So, I decided to steal one of his rough drafts (with his permission, of course) to use for tonight's blog post.

In Joe's own words, here is the autism he knows:

Vicki was born on May 12, 2002. She is one of my two younger sisters. She has Autism. 

Vicki was diagnosed at a very young age. She has gone through many different treatment options, by which I mean therapy, as Autism has no cure. Since she was little, she has had therapists come over to our house to do therapy (ABA). We  are always looking for new therapists, as the ones we hire are in college, and they all have to be trained. We have had over 20 therapists over the years. 

Autism has greatly affected by my sister's life and my family's lives. Autism has many symptoms. Vicki has different speech patterns, often she speaks in fragments and in third person. Vicki doesn't respond to all questions, often just repeating the question. When she doesn't get the things she wants, she yells and may get aggressive sometimes. She cries randomly and without explanation. A while back she started to hurt herself, through smacking her head and tying to knee herself. Autism used to make Vicki terrified of animals, as in scream and try to run away terrified. Vicki also had elopement issues, meaning she has wandered off before. Vicki got out of our house one time when I was really young. We had to call the police and she was found a few houses down the street. That made us get alarms on all the doors and windows, so we know when they are opened. Recently, Vicki won't get into the car anymore, and being my height and strong, we can't get her into the car, even if we need to, without my Dad. When we went to The Netherlands, every time we got into or out of the car, we had to wait for usually a half an hour for Dad to be able to put her in the car. Vicki can not be left alone at home, even for a short period of time, and with her not being able to get into the car, getting somewhere or doing something is a challenge. Vicki has OCD, so combined with Autism, things NEED to be the way they should be. For example, Vicki needs to sit on the middle cushion on the couch; she won't sit on the ends. She also has PANDAS, which is a diagnosis for a subset of OCD or tics (an uncontrollable repeating behavior). Vicki also has seizures. So it's all very confusing and interconnected. She would freeze up and be completely unresponsive and repeat whatever she was doing, including shaking, swallowing, and blinking. 

Despite all of this, my sister is a wonderful person. She loves our new puppy that we are training to be a service dog. She used to love horseback riding before she was scared of animals. She loves to draw and color. She really loves music, with some of her favorite songs being Cheerleader by OMI, Crazy by Gnarls Barkley, and Budapest by George Ezra. But most of all, she loves to cook; and a fantastic cook she is. My mother created a blog for her, as well as a P.O. Box, for people to send her recipes, and then Vicki would make it and mom would post pictures of the meal. Food Network or The Cooking Channel is commonly on TV in our house. 

I hope with this you have a better understanding of what Autism can do to a child and her family. 

Just as I said last night about Ally, I don't push Joe to open up. I know that when he wants or needs to talk, he does it in his own way, in his own time. I have tried not to badger him about this year long English project. I haven't asked to read his papers. He shows me when he is ready. I didn't see this one until after he turned it in. He knows I am here to talk anytime he wants to. And help him in any way possible, but it's his voice. Not mine. And I respect that.

I hope you enjoyed reading about Autism from Joe's perspective. I find it very interesting what the kids pick out to talk about. I really liked the last 2 days of posts and plan to interject their thoughts more on the blog if they let me.

Back to me tomorrow. Boo!!! ;) Thanks, as always, for reading and for loving and supporting our whole family. Love you. xoxo

Day 7. Year 6.

Tonight I decided to do something a little different. I decided to let Ally write. I did not censor her or change her wording at all. I wanted it to be her voice. She did ask me to ask her questions so it could guide her writing. Pretty sure the questions I asked her are evident. I think it's fascinating getting a glimpse into the autism that Ally sees. Ally talks a lot to her school guidance counselor when things are difficult at home. I never pry. I want her to be able to talk freely to someone without worrying if it will hurt my feelings or make me upset. So without further adieu... here's Ally! 

Hi, I am Ally, Vicki's little sister. 
I will be turning 11 next week; I am in 5th grade and
I LOVE TO CRAFT!!!!!
It may be because I am home a lot. But that's o.k. Because I get to spend time with my family. 

You may think it's hard having a sibling with autism, it is. But we manage. 

Sometimes I worry about my sister or my mom or dad getting hurt when Vicki is having a hard time and I have to go in a different room. 

I remember once when Vicki was having a hard time in her bedroom and she pushed me. I went to my room and Joey came in and I sat on his lap and cried. He was telling me I was o.k. and he was telling me jokes and making me laugh.

I think it's sometimes hard to have an older sister with autism because a lot of people have to come in and help her with stuff. When they leave and grow older I am sad because I got attached to them. Sometimes they are like my older sister, because they do what I think older sisters would do. They talk to me and help me and have fun with me. And I think I can't do all that stuff with Vicki sometimes. 

I think I help Vicki with a lot of things because I think sometimes Vicki wants to copy me. I get very annoyed sometimes, but mom says it's because Vicki wants to be a lot like me. It's because I'm fabulous. :) I help her when I'm baking because sometimes when I am baking she comes in and wants to do it. She copies me a lot when I am drawing and I help her read. 

There are a lot of things that are hard to do with Vicki having autism. Whenever I want to go somewhere or do something, my mom always has to stay here with Vicki and her therapist. So I get sad sometimes because my mom can't always do things with me. Going to Pennsylvania is really hard because she won't get in the car and I really want to see my cousins and grandparents. I think she wants to go in the car, but something is telling her she can't. Right now my mom can't volunteer for field trips and that makes me sangry. Get it? Sad and angry. Ha ha. 

What I like about my sister is that she always pushes through things even if it's hard. It motivates me to do things that are hard too. I like how Vicki used to like to paint her nails red. I can't stand painting my nails because the nail polish chips off and they look yucky when that happens. 

Some people at my school judged Vicki a few years ago because she had to walk with an aide and she never took regular classes. Yes, she has to do that stuff, but you don't have to make fun of someone for doing things differently. I think that's what makes a person unique. 

It's electrifying! 
We all gotta shape up! 

From one of my favorite songs from Grease. 
Thanks. I'm done.....................................................................

So what did you think? I am super proud of Ally for writing this. Tomorrow night you will get to hear from Vicki's older brother, Joe. A little change of pace. And then back to whiny ol' me. :) Love you all. Thanks for your support, always. xoxo

Day 6. Year 6.

I think one of the hardest things for me is living in fear. It's a fear that's like no other that I've ever had. And I'm not exactly sure how to describe it.

For the most part, I would say this week was a *good* week. Vicki was able to get on her bus at 7:37 every morning. {On Monday, I needed my husband to get her up out of bed, if he hadn't... then this week, I'm sure, would have played out very differently. Tuesday I had to do a lot of physical assistance and timer/clock work to get her through her morning routine. By Wednesday she had started to internalize her 'new' morning ocd routine. And Thursday and today went about as well as I could have asked for.} You would think that would make me happy. It did. I was very happy with the progress we made. I was so proud of Vicki, and also proud of myself for keeping things calm and flowing as much as I could. And proud that we found something that works, for the moment. It felt good. And dare I say, it felt comfortable and secure by the end of the week.

But most of the time I try not to get too comfortable or too secure. And I think it's partly because of fear. Sometimes I don't enjoy the moment as much as I know I should. I don't celebrate a victory as much as I know I should. Because I am always waiting, always anticipating, always afraid. Especially this year.

I wish I knew. I wish I had a very specific list of *triggers*. Things I could always avoid so that we keep flowing. But no one can avoid things altogether. Not even if you know what you need to avoid. Oh, I have my gut feeling, I have a hunch. I have past experiences to draw from. But I can never say with certainty what it is that will set off a spiral that we have trouble recovering from.

I keep waiting for that something. Sometimes I can pinpoint that something. Other times I have nothing. It blindsides me. I understand that life is full of uncertainty and no one can anticipate how something is going to play out. I do.

But, in a very general scenario, most of the time I know that when Joe and Ally get up in the morning, they will get dressed and catch the bus for school. But with Vicki, I don't have that. I have no idea what the morning will bring. We could be flowing along in a very specific, very detailed OCD scheduled scenario. Vicki has to complete one task in the way that only she knows how it has to play out, before she can complete another. The kicker is, I have no idea what that is. Ever. I have no idea how her brain is firing. I have no idea what has to happen or what is happening that makes things go so wrong.

There tends to be a predictability, a familiarity, in mundane tasks.

But with Vicki, the predictable can rarely be predicted anymore. For instance, we were flowing through the morning routine on Wednesday... I know the places in her schedule that we *typically* have hiccups at. {For example... physically sitting up and getting out of bed has been a big deal breaker lately. And I will say, even if my husband is home and he tries to get her up, if there is something stopping her, something in her head stopping her, even he won't get her up. And if he does, then because we interrupted the sequence of what had to happen in her head, the next step and the next step are thrown off. And we won't make it on the bus. Because she can't get through it. She will fight and fight hard. Another stopping point is either before or after her shower when she is sitting on the potty. If she doesn't pee, then sometimes she won't move. Or it could be something way more complex than that in her mind, I have no idea. But, usually, once she is getting her clothes on and I am combing her hair, I know that the rest of her morning routine will happen and we will make it on the bus in time.} But on Wednesday, the whole morning went so well, so smoothly, that we were ready a few minutes ahead of our normal schedule. And that was different. Because the extra time was thrown in, or for some other reason I was not aware of, Vicki froze at the top of our driveway. And there was that fear that I am talking about. It wells up inside of me. The moment I feel her freeze. The fear is there, strangling me. If I can't figure out the reason she has stopped, or what will make her go again, then we are screwed. We could potentially be standing at the top of the driveway all day long. You probably read that and though... no. That can't happen. I am here to say, yes it could. It absolutely could. Because sometimes it doesn't make sense on the surface, but it does to Vicki. And I have seen how long it can take to "un-freeze" her, or wait her out, or whatever you want to call it.

So that's it. That's only one of a thousand examples that occur each and every day. That's why I live in fear. That's why when I sit in meetings  and someone talks about fading back certain supports we have in place, I cringe. I, of course, want to see Vicki be successful and I want to pull back when we can. But, I also know that things can change in an instant. The wind blows. And we need that support back. I can't anticipate what day of the week it will be or whether it will be 2 weeks from now or next month. But I know it will happen. And I don't want to be left without a back-up plan.

It's really hard to explain this if you think in terms of behavior only. I know, deep down inside, I know it's not just a behavior. It is so much more. And until we can find out how to help Vicki, it will keep happening.

Just one more example for tonight... I just got done saying how this week was *good*. And I use the word *good* very loosely. Because even thought it is better than last week, it's really hard to define good. Good to me is my Vicki smiling and laughing and being able to get into and out of the car. Good to me is being able to do the things she could do 4 years ago or last year. How good is good if you can't even try anymore? Sorry, Squirrel. Anyway... the example. Based on my description of this week getting onto the bus, you would think that most of her bus transitions would be pretty decent. Well, on Wednesday, I noticed that her bus wasn't pulling up to our driveway within the usual time frame after school. Maybe there was a bit of traffic. Maybe another student had a little trouble. But even thought I didn't know why the bus was running a bit behind schedule, the fear started creeping in. I just knew. I knew Vicki was having trouble. And by the time the bus pulled in 25 minutes late, I knew why. She was having a good day, until she wasn't. And that's when a struggle ensued. Sometimes it takes everything everybody working with Vicki has to get her onto that bus. And I appreciate it. I really do. I know they love her and care about her and want to help her. But when that block comes from Vicki, that's it. It's hard for anyone to get past it. Most of the time I don't want to describe in detail what anyone has to do to get past it with Vicki. And I won't now, either.

I just used this as another example. And example of living in fear. It's not easy.
I will admit something here. I wanted to end this post with a cute little quote about fear. But when I googled 'quotes about fear' and started reading them, I just got really sad. I just read a quote that said:
Don't lose yourself in your fear.
Sometimes I'm afraid I already have. xoxo

Day 5. Year 6.

A little catch up for me today. Sometimes people ask me how I think of the topics I discuss (or whine about). And honestly, I  usually just pick out one of the multiple streams of thought I have on that particular day. I have an abundance to choose from. :) A lot of the time I feel like I post about the same things day after day, and that makes me think, well, that stuff must be on my mind a lot.
I'll also pull from things that happen during that day.

For instance, my youngest daughter, Ally... She had a busy week this week at school. Her 5th grade class went on a field trip to the National Zoo yesterday and this morning she had a field trip to .... middle school for orientation. (Ahhhhh. I. Am. Not. Ready.) So these events have had me thinking about stuff....

Obviously, I am a stay-at-home-mom. Holding that title is something I should be very proud of. I know that when I was little, I was grateful that my mom stayed home with me. She was my number one cheerleader, always there for me. She knew my friends. She knew my friends' parents. She knew my teachers. She took me to and from all of my cheerleading practices and sat in the stands at all of my games. She chaperoned my field trips. I knew I could count on her. And that was such a relief to me growing up. I can still count on her today. She's always there for me, even though now it's over the phone. I talk to her daily. She is a critical part of my life. I want to be just like my mom when I grow up.

Now this is not meant to be a post over discussions of stay-at-home-moms vs working moms. There should be no verse. We are all moms. And we are all pretty damn amazing. I was a working mom for a while, and then I wasn't. I am a SAHM by necessity. And I still feel guilty over it sometimes, like I don't contribute enough, I don't do enough... etc... . I could write pages about that. But I won't today. What I wanted to say is that I feel cheated. And I feel sad. Especially this last year. I know I am doing exactly what I need to be doing for my family. But.... I don't even get to enjoy some of the perks of being a SAHM anymore. And for that, I feel cheated. And my kids are cheated.

When Ally was in Kindergarten, I was able to be pretty active. I had my cute little volunteer badge for the school and I felt like I was participating, I was a part of her school community. I loved going in and stapling papers, cutting things out, doing bulletin boards. I loved running their class store. I loved reading to the kids. I loved getting to know her classmates. I was a chaperon on her field trips. We went to the pumpkin patch one time. We went to see a play. She wanted to sit with me on the bus. I was even able to volunteer once a week when Ally was in first grade. But even at that point in time, it was getting harder. I probably wrote about this before... but the last field trip I chaperoned... I remember.... I had Vicki and Ally in the car rider drop off line in the morning. I was going to drop them off and then park and come in to get ready for Ally's field trip. Vicki has always had a hard time with transitions... even then. We were dealing with her not getting out of my van in a set amount of time. (But at that time it was because of autism. Now, it's so much more... autism, PANDAS, her high anxiety, etc...and so much harder) Anyway.... Ally went in to school and Vicki was still sitting in our van. We had a protocol back then that if Vicki wasn't getting out, then I would pull up, so I didn't block the car rider line. And we would work on getting her out. That particular day was difficult. Very difficult. She was not budging. And Ally's field trip had buses that were scheduled to leave at a certain time. I was sweating. Everyone that was working on helping to get Vicki out knew that I was going on this field trip. Eventually we got to the critical time. I had to go or I wouldn't be on the bus with the kids. And teachers need a certain amount of parents to chaperon. They were counting on me. So the staff told me just to leave. My keys were in the van, Vicki was in the van. They told me to run to go. So I did. I had to leave Vicki. I had to leave it all. Staff eventually got Vicki out of the van, and they parked my van in the parking lot and gave me my keys when I returned from the field trip.  It was that day. That day that I realized fully the extent of what was happening.

I have always prided myself on being on time, being dependable. Being someone that you could count on. If someone asked me for a favor, I would try my hardest to be able to comply.

And that's why I feel cheated now. I am a stay-at-home-mom. I should be able to do this. I should be able to chaperon my kids' field trips. I should be able to be a mom taxi. I miss it. I miss it tremendously. Of course, we all complain right? About all of the after school activities and feeling like we are a taxi and that we live out of our car, right? How I want to have that luxury to complain about that again.

I HATE the look on my kids' faces when they come home with a field trip permission form now and they timidly say, 'they still need chaperons mom.'. They know. They don't even form it into a question. Because they know it will make me sad to have to answer that I can't. I can't guarantee anything anymore. I know life is not a guarantee and that things happen and we have to cancel our commitments. But right now, where autism and PANDAS has led us currently...
I can't commit to anything. Because Vicki can be so unpredictable. And this year, I don't even know on a given day if I will be able to get her out of bed to go to school. I can't promise that I can be anywhere. It's not the same as having to cancel because a kid is sick, But then again, maybe it is. My Vicki. She is sick. We are doing everything we can to figure out what is wrong and what we can do to help her. I will devote many a blog posts this year to that. But she is definitely sick.

It's been so hard for me to ask for help this year. To ask other parents if they can take/pick up my kids from activities. I've actually stopped most of their activities because of this. Ally doesn't ask to play on a soccer team anymore. We stopped her guitar lessons. She doesn't go to dance anymore. (Now, to be fair, I think she lost interest in some of these activities on her own). BUT I know that in the back of her mind, she won't even try to ask to start something new because she knows that I can't take her or pick her up. Do you know how awful that makes me feel? How worthless? I am here. At the house. And I have a working car in the garage. And on the days when things fall through and I don't have something lined up... if Joe calls me for a ride, I can't do it. I am right here. A few miles away. With a car. And I can't do it. It breaks my heart. I know that I have an amazing support system and that if things tank, I can call on so many of my friends and they would do whatever they could to help me and go get my kids. And I have done that. But every time I do, it hurts. I am their mom.

I don't volunteer anymore, I can't even go to parent-teacher conferences some nights. I have lost touch of who my kids are outside of our house. I don't know their teachers anymore. I have never gone to one of Joe's wrestling matches. He's been wrestling for 3 years now. I have never taken a picture of Joe in his high school football uniform. Never seen a football game.  Now, I am lucky. I have some amazing friends. They know that I want to be there taking pictures, but can't. And I am so grateful to be sent pictures over text and chat and to be tagged on facebook from an event that my kids are participating in. It means more to me then they will ever know. For them to recognize my pain at not being there, and for them to take a picture of it and send it to me as it is happening. It makes me feel like I am still a part of it. And for that I am forever grateful.

But just one, just one now, I want to have the choice. The choice to say.... no, I don't want to go on that stinky field trip to the zoo. But I'll catch the next one. You know? I feel like I am slacking on a big part of my job description as a SAHM.

Thanks for listening. As always. Writing these things down, it helps me tremendously. I hope that it helps you in some little way too... I don't want the few minutes that you are reading this to be a waste of your time. Time is precious. And I hope that you take something from this... xoxo

Day 4. Year 6.

Well I did the first 3 days without falling behind in posting. That's something. ;) 

It's been a rough week so far and I'm not really sure why. Maybe it's just trying to get back into a groove post-Easter and post-spring break. Maybe it's just that overwhelmed feeling you get when writing your to-do list is going to take so long that you have to put writing a to-do list on your to-do list. :)  Or maybe it's the fact that we started this week off with a 4 hour IEP meeting. (which will be continued later this month because we had to leave to get Vicki off the bus after school). I can't tell you how many of these we've been to over the years or how many more we will be attending in the upcoming years. If it's a particularly challenging year we meet almost monthly for something - whether it be for an IEP (individualized education program), ESY (extended school year), triennial (where we meet every three years for a re-determination that Vicki is still eligible for special education services) , a BIP (behavior intervention plan), or whatever else is deemed necessary. No matter how many times I've been in these meetings, they never get any easier. I still feel sick to my stomach days leading up to them. And, honestly, I think the reason I am still so exhausted is that it takes a few days for me to rest up after, rest up mentally, emotionally, physically. My husband and I always attend these meetings together. And it's hard to do because he has to take off so much work for Vicki's doctor appointments. But it's important. Vicki needs us to fight for her. 

I think it's rather ironic. How much communicating parents of a child with autism have to do to get services for their child who can't communicate. Sometimes I get so tired of talking. (Gasp!) You wouldn't think so reading these posts.... :) But I do. It's hard. It's hard to find the right balance of everything when you step into the ring. I mean meeting. 

I enter the ring armed with a cup of coffee, a pen and my notebook, oh, and my amazing husband by my side. We start up bouncing around a bit. Warming up. I smile. I crack a joke. I try to make people feel at ease. I tell a personal story about Vicki. I compliment a good written report when I see one. 

Ding- ding- ding. Round 1 over. More discussion. Rounds 2, 3, and 4. And then we all start to sweat a bit. Jabs are thrown. From both sides. Ding-ding- ding. Round 5. Round 6. We pause. We re-group. We go back for more. And then the hard punches start being thrown. I have my Kleenexes ready.  I try not to, but I can see it coming. My voice cracks. I get emotional. And I cry. 

Then more punches. I fire back. I will stand up for my daughter. I will demand that she is armed with what she needs to be successful. Ding-ding-ding. Round 7. Round 8. 

I'm not sure how much more I can take. I know I need to be strong for Vicki. But sometimes I don't even see the punches coming. And I'm not prepared. Sometimes I can't even see straight. I get confused. I'm not sure which way to turn. I don't know who to trust. Ding-ding-ding. Round 9. 

My heart bleeds for my baby girl. I know Vicki better than anyone. I am best equipped to fight this fight for her. But sometimes I feel like I am not strong enough, Like I have lost before I even step into the ring.Ding-ding-ding. Round 10.

Sometimes I don't even know what I am fighting for. I know I am fighting for Vicki. But I don't know what will serve her best. I'm the one who knows Vicki better than anyone and I don't even know what I should be doing. That scares me. And I get so tired. So emotionally drained. So beaten down. Punch after punch. Meeting after meeting. Year after year. 

We had to stop this fight. But we will finish it. And then we will ask for another fight. And then another. Because Vicki needs us. She deserves to win. She will win. 

I want so badly to talk more personally about these meetings. But I won't. I just wanted you to know about the fight we fight every day. I'm so glad you are here to cheer us on. To cheer Vicki on. V for Vicki. V for Victory. 

Don't you want to watch Rocky now? :) 

Day 3. Year 6.

I'm going to write a little earlier tonight. And it's probably not going to make any sense. But this is our life, and sometimes nothing makes sense. I love a good puzzle. I love a good book. But sometimes.... it's just too much for me to process. And right now, this moment, is one of them. Today was filled with exciting highs and heart-wrenching lows.

So, I wrote last night about how we had spring break this past week. And how Vicki hasn't been out of our house (with the exception for our backyard for a few minutes a few times during the week, which, don't get me wrong, was exciting in and of itself because she hasn't been able to go in our backyard but a handful of times this past year.) I think, no, I know, that Vicki misses being out in the world. I know she does. All week she had been asking for trip and hotel and restaurant. But when the time came to see if she would actually be able to follow through with her requests, she couldn't do it. She would freeze and become very anxious. But today she kept asking over and over again to go in the van and go to a restaurant. And, again, she's done this quite frequently over the past year. But then when she would have to stand up to go get into the van, she couldn't. Anyway... you know that when you are highly motivated to do something, the probability that you will complete the task increases, right? That's usually the case, except with whatever is going on inside of Vicki right now. Call it whatever you want. All I know is that her brain and body are not cooperating with each other. And sometimes I can physically see her fighting herself. It's in her body language and in her face. It's so hard to describe unless you see it. And I hope most of you never do. It is heartbreaking to watch. But in the same breath, I want all of you to see it. And I want you to see how it changes. And how it stays the same. And it drive me to the brink. I don't understand any of it. Not one bit. And that is very hard for me to accept. It's not a fluid behavior. It's not tied up neatly in an ABC data form. Here in the antecedent. Here is the behavior. Here is the consequence. This, whatever this is, with Vicki... it doesn't work like that. It's so obvious now that it doesn't fit a mold that the behavior company we work with no longer attempts to figure out how to get Vicki through it. They tried for a few weeks. Stood and watched her not be able to transition for 6-8 hours. Took data.. And then stopped.

Sorry, I can feel myself drifting off from the original intent of this post. It's a very hard decision for us anymore. To try or not to try when Vicki specifically asks to go somewhere. You may think that's harsh. But we have reasons why we don't try. For instance, the more we try and then fail, even if this behavior wasn't serving a clear function, we would end up reinforcing her not completing a task. Because you never know how hard it is going to be to force Vicki into the van. Even when she really, really, really says she wants to go. And if you think about it.... when you go somewhere in your car, you usually have at least 4 different transitions, right? Unless you are strictly going for a drive. You get in the car, you get out of the car when you reach your destination. You do your thing. You get back in your car and then you get out of your car when you return home. Just think about that for a second...  everything we take for granted. I take it for granted. It's easy for me to get in and out of the car. Now maybe when you have a toddler, you don't want to take that toddler into a store... I remember those days... but ultimately, even if your toddler was throwing a temper tantrum, you could technically still pick your child up and take him/her into the store, or wherever you were going. It might not have been the easiest, but if you really had to, you could do it (always different in different situations though, I understand that). But with Vicki now.... I don't take any of those transitions for granted. And no one but my husband is successful at getting her through those transitions. And even when he does, it's usually not pretty. Not pretty at all. We are scared. We don't want to create more anxiety for Vicki. We don't want Vicki to get hurt.. We don't want to get hurt. And we don't want the world to see how we have to live.

So, what usually happens? Lately all 4 of those transitions have been heartbreaking.

But even if you have 1 of those transitions that goes fairly well (like today!!) and you start having hope again... thinking... maybe this is it. Maybe she is turning a corner. Maybe just like that this torture is over for her and for us and for her brother and sister. And then we have the next step in the transition process. And it takes an hour. And you know she wants to. But she can't. She's stuck. So you split up time... just like a lot of parents do with kids... I take Joe and Ally in to eat and play and Daddy stays in the van with Vicki. Trying just about everything he can think of to ease her fears. He sits beside her, he holds her hand, he talks to her, he walks her through the time because she keeps asking to get out at 7:10, no. 7:11. And then when 7:11 comes around, she changes it to 7:14... you see this pattern, right? And then he'll ignore her. And then he'll sit quietly beside her. And then, all of a sudden, she can move. And she tells Daddy where to move to and how to stand and then it's over. She's out of the van. And then she starts walking. And then she stops. And she freezes. And she can't move forward. And then she can. And then she sits down in the restaurant!!!!!!!! Oh my goodness. And then she watches the timer. And then when we ask her what the timer is for, she doesn't respond. And then when there is 2 and a half minutes left on the timer she jumps up and says, Vicki. She wants to. Vicki go to bathroom. And then the fear that I have... what if she gets into the bathroom and I can't get her out? Oh yeah, that's happened before. But we make it. And we all leave. And then we get home and she can't get out of the van again. I wrote most of this while she was still sitting in the van, not being able to move and get out. It's heartbreaking. Finally Daddy had to get her out forcefully. And then I got to start the waiting process of having her pee before bed, not knowing how long she was going to stand naked in the bathroom until she was able to move and sit down.

It's all like a horrible game of childhood freeze tag gone wrong.

I told you this probably wouldn't make any sense.

But that's what it looks like, and that's why sometimes we don't even try. But tonight we did. And we were rewarded with 1 absolutely amazing transition. And we heard her giggle. And we saw her laugh and smile as she sat at Chuck E Cheese and ate a slice of pizza while watching her timer. I should be over the moon. And I am. But it's so hard to  sometimes when you've also seen the fear and anxiety and difficulty. And you know that you have to immediately fight another battle. Unsure of how long it will take you. How long until she sits down to pee so she can go to bed. And then the fear as I am sitting here now... wondering if I will be able to get her out of bed tomorrow morning so she can get on the bus and go back to school after a week off. And then worry that if I can't, then we will have to cancel the IEP meeting that we have tomorrow morning and reschedule it. And know that as soon as I am done writing this post I will print off a draft IEP that was just sent to my email an hour ago by the school. And I have to stay up and review it tonight. Sometimes it seems like just too much. But I know we will never stop trying and fighting for Vicki. Because, damn, that smile is so beautiful. And Vicki deserves every happiness and every smile and every laugh.

Thank you, as always, for listening to my nonsense. You have no idea how much it helps me. xoxo

Day 2. Year 6.

I just want to first thank all of you for your response to my opening post this year. You sure know how to make a girl feel loved and how to renew my spirit and dedication to writing again this month. So, thank you, thank you very much. You will never fully know how much your love and support and kind words mean to me.

I wanted to talk tonight a little more about this past year.

Sometimes I feel very petty about some of the things that I grieve over, things that I am sad about losing. I feel petty about this because I look at all of the pain and suffering in this world, and I think to myself... what gives you the right to feel so sad about ...... and......?  Look at the things that I am complaining about. so insignificant in the grand scheme of things. When I step back and look at it, I feel guilty for not being thankful enough for all of the blessings I have been given in my life.

But then I sit back and think about it. It's all relative. We each have our own set of circumstances. Our own reality. We are shaped by our response to our own experiences. We each have the right to feel however we feel about our own unique set of struggles. With that being said, I thought I would share a few of the experiences that I now grieve over. They may seem silly to you and insignificant to you.You may even think.... how can she be grieving over that? And while the individual things may seem trivial.... I look at it from a more global approach. When someone you love is struggling in so many areas of their lives, when daily functions are difficult, ultimately you look at that person's quality of life. And how it suffers. And that... that is what I grieve over. I grieve for the smiles that no longer touch her lips, and the laughter that no longer resonates in her throat. I grieve for the sparkle that has dulled from her eyes and the spring that is no longer in her step. {Now, it's not that those things are never present anymore, because that would be more than I could bare. I still see them, but they are sparse. Very sparse. And that makes my heart break into millions of little pieces.}

I'm not sure I'm making any sense right now. It's very late, or very early, depending on how you look at it. I couldn't sleep with this crazy wind whipping outside. (Plus my son Joe is on a camping trip for scouts. I will feel much better when he returns home, takes a nice hot shower, and crawls under his own covers in his warm bed.) Anyway.

Things I grieve over. I'm pretty sure I mentioned this one last summer... but I'm going to mention it again. Every year, since the kids were born, we would go to the mall and get pictures taken for their birthdays (because they are all in April and May) and for Christmas. So it was about every 6 months. And yes, I know this is ridiculous. I never said I was rational. :) I would get the kids all dressed up in their finery all the while listening to them complain about their uncomfortable outfits... Just taking a trip to the mall was stressful. In fact, we usually only go to the mall twice a year, yep... to get their pictures taken. We would painfully go through the photo shoots with one of more children having a meltdown. Getting all 3 kids to smile together was a feat not often accomplished. "Don't worry about them all looking at the camera... in fact... hey.... lets get them all looking at the book together. That way we don't have to deal with that." Every 6 months. My husband was always like... why do you torture all of us with this? I don't know. I just started doing it and then I couldn't stop. I didn't buy many pictures. But I always got 1 of each kid, and one of all of them together. I put them each in a cute bonded brown leather photo album. And I will admit... I LOVE looking through these pictures.So do the kids. So much of that mall trip was difficult, but we would always go to the food court and order a slice of that big, greasy pizza (AFTER the pictures, of course!). And then last year, it stopped. We tried to take the kids down (and I did just look back at my posts... I did write about this day...in fact, it was the last post Day 28. Year 5.) Vicki could not get out of the van to walk into the mall. So, it was just Joe and Ally for those pictures. And that day was hard. It was like I now had a visual reminder that Vicki was struggling big time. When she starts disappearing from pictures. I still get choked up writing this. It's like a visual representation of me giving up on her. And yes. Yes, I grieve over that.We didn't even try for the Christmas pictures this year. We didn't even try.

Another thing that I grieve over. And this one is pretty fresh. Easter. And this whole week of spring break. One of the things about Vicki that I'm sure I've talked about before... She loves calendars. She loves holidays. She loves celebrating. Everything. So do I. Each month  (I think) is defined by holidays for Vicki. We decorate. We celebrate. Everything. Even Groundhog day. Vicki still wants to eat groundhog dirt pudding every Feb. 2, because we made it one year. Every year for Easter we would find an egg hunt to go to. I would dress the kids up in their bunny shirts and we would make it a day. Now, it's never spontaneous or easy. But we always gave it everything we had. We always tried to make it work and make it special for all of the kids. We've done some fun egg hunts... from traditional egg hunts roped off in a field, to egg hunts in grocery stores. From egg hunts where they hide real hard boiled eggs (ewww!) to egg hunts at wineries. (Those are my favorite! What's better than enjoying a wine slushy while your kids run through vineyards finding Easter eggs?) And then there was this year. There were no egg hunts. We couldn't get Vicki in the van to go to any. And deep down, I know she wanted to. They all did. Even the 15 year old, who would never admit it. And so we stayed home. Yes. I grieved for that. We didn't go anywhere at all for spring break this year. We've gone to the beach in past years. We've taken day trips. We've always done something to make it special for the kids. And this year... nothing. Vicki hasn't been anywhere since the last day she took the bus to school 9 days ago. And if it wasn't for friends coming over for Ally and Joe and Joe's current scout camp-out, the kids would have done nothing at all for spring break. They did clean their rooms and catch up on homework and moving watching though. ;) And we did make memories here at home.  But I don't think most people realize what a blessing it is to be able to put their kids in the car and set off on an adventure. See where the road takes you. I know I didn't realize it, until we couldn't do it anymore.

I think that's what I grieve over the most. Autism and PANDAs has taken away part of Vicki's and Joey's and Ally's childhood. Granted, children grow up. It's definitely a hard process for me. Letting go. Change. No longer being able to dress my kids up in holiday shirts (ha!)... seeing that they no longer feel the childlike magic in a moment, and I no longer try as hard to make those moments magical. Priorities change as the kids get older. I understand that. But. It wasn't my decision. It wasn't Joey's, or Vicki's or Ally's decision. This damned disorder stripped us of making those decisions for ourselves. Maybe it's better in a way. Forcing me to let go. But I'm mad. I'm not ready. Not yet. And I don't think the kids are either. And that's why I grieve over things that may seem silly. We did not get to make those decisions for ourselves. Circumstances forced our hand to do so. When I look at that bonded brown leather photo books, the pictures just stop. And it's not fair. Ally's should not stop at age 10. Vicki's should not have stopped at age 12.5 (the last pic she got at the mall). And Joe's.... well, maybe his should stop at 15. But I wanted it to go through all of high school. :) Yes, I know. I'm still ridiculous. But when I look at those pictures....I will always know why they stopped. And that. That makes my heart hurt.

Grief comes in all different forms. xoxo

Day 1. Year 6.

Should I? Shouldn't I? Should I? Shouldn't I?

I wrestled with these questions all day today. I don't know why it was so hard to decide. But it was.
Do I have it in me anymore to write? Does anyone really want to read about sadness and fear and exhaustion? Do people see my post and roll their eyes? Oh, here we go again. Another month of whining. Another month of awareness stuff being shoved in my face and junking up my news feed.
I'm sure there are people who do feel that way. I'm one of them some days. But, ultimately, here I sit again. Why? I guess because this is my 'me time'. My time to sort through it all. Make sense of it all. Spit it all out, and (wishful thinking) let it all go. I want so badly for this writing to be like a month long massage. For my brain. To be able to talk through all of the stress and strain and feelings of hopelessness. I hope I can make it through this month, writing.The last few years I haven't been able to. We'll see.

One thing I really want to do this year is open it up more. To you. I want to know what you want to know. I want to know what you are curious about, what you kind of want to ask me but are afraid to ask or think it would be offensive to ask or think it would be silly to ask. So please. Ask me. Send me a message, post a comment. I will try my best to honestly answer anything you want to know.

I decided to reflect a bit to start out this month. Reflect on this past year. I could write pages and pages on my lack of understanding of what is happening with Vicki. And I have. In my head. Over and over again. For those that have been following me at all on facebook and who know me at all.... know that it's been a very hard year. Probably the hardest one yet. When I'm quiet on facebook, you know. I love how you know. I love how you call and text and I love how you love Vicki and me and our whole family.

It's hard to pinpoint when things went really bad. Because usually we have our ups and downs. Behaviors come and go. We have good days and bad days. Just like everyone. But this year... oh man. It's been filled with so much heartache and sadness. The bad days turned into bad weeks, bad weeks into bad months and bad months into a bad year. And they overshadowed the good moments. And that is what makes me the saddest of all. I lost hope. That's so hard for me to write. Me. Vicki's mom. The one who tries to find a triumph in every word, in every action, in every day. I celebrate moments. I celebrate the little things that are the monumental things. That make Vicki who she is. I stopped celebrating. I stopped being hopeful. I just stopped. Because sometimes it's just so damn hard. It is so damn hard to plaster a fake smile on my face and utter.... 'oh Vicki's doing good...' when I would see someone on one of the rare occasions I interacted with people and they would politely ask about Vicki. It's hard to fake it. But it's even harder to not.

So. Here I am. Not faking it. How has Vicki's year been? Please bear with me. (This is not going to be beautiful or eloquent. But it's going to be real.)

It's been a shitty year. A really shitty year. Starting back in April... I'm sure I wrote about it then... When we went back to school after spring break.... The van. Our damn van. All of a sudden Vicki stopped getting out of the van when I would drop her off at school I don't want to rehash it all. It just happened. From getting out of the van independently with me and walking into school... to having 4 people full on put hands on to get her physically out of the van into school. And then just when you think it can't get worse. It did. Everyday. The fear. Wondering... oh, my god... will I be able to get Vicki out of the van after school? Will anyone be able to get her out? Daddy could. But he has to work to pay all of the medical bills that insurance won't cover because most of the specialized doctors we see to try to guide us through these changes in behavior... give us medicine and bills. And then nothing helps. And we had to wait in the van for hours some days until Daddy could get home to get Vicki out of the van. And then we saw more doctors. And they tried different medicine. And some medicine made it worse. So much worse. Remember the self injurious behaviors that I wrote about? That was so scary. And we made the decision to go even more in debt because Daddy had to go overseas for a work meeting. And he was afraid to leave us. Afraid that her self injurious behavior would get worse, Afraid that we would be left sitting in the van all night because Vicki couldn't get out of the van. So we went with him. It was not a vacation. It was survival. And yes. Things got even worse. From only having trouble getting out of the van, to not even being able to get into the van anymore. Fearing that someone would see my husband trying to get Vicki into our van and think we were taking her against her will. I don't wish that kind of fear on anybody. Watching Vicki, our Vicki, our smiling, content Vicki... turn into someone that we didn't know. The fear she has. The anxiety. The utter terror on her face when she is faced with things that she loved to do before. She cries. She doesn't just cry... it's hard to explain... it's a guttural cry that rocks me to the core. She is desperate. She is afraid. And I don't know what I can do to help her. She is fighting something. And I can't see what she is fighting.

But you guys know all of this. I don't know why I am rehashing it. It just continued to get worse. We had meeting after meeting with school and our behavioral company. We were able to get her to school by trying a bus for the first time. It wasn't easy in the beginning, but it worked. Why? Why would a bus work and not our car? Or anybody's vehicle? But then there were days...We were just sailing along. And then we weren't. And it wasn't anything that we could figure out. Days that she wouldn't get off the bus. Days she wouldn't get on the bus. Weeks I couldn't get her out of bed to go to school. And the fear that we live with everyday... Is today a day we won't be able to get her on/off?

 And then the increased urine frequency. 24 times a day. And she would wash her hands so much they got chapped and raw. And then more doctors. But it is a vicious circle. More doctors meant more car rides. And forcing her in the vehicle. In. Out. Doctor. In. Out. It's torture for Vicki. We don't take car rides lightly. We can count on our fingers the amount of times in the past year we have attempted a car ride. Let me say that again. We can count on our fingers how many times we have attempted a car ride (that wasn't for a doctor's appointment). It's tragic. It has affected not only Vicki, but our whole family. We would always go for rides in the car on the weekends. Go on hikes. Go out to restaurants. Vicki loved car rides and being out. And then it's over. It's just over.

It sounds like we make this up sometimes when I describe it. It sounds unbelievable to me. I always think... people must think we are super lazy. We just don't want to. We use Vicki as an excuse. It can't be that bad. It can. It really can. It can be hours and hours. And the fear in Vicki's eyes. The anxiety. I have taken videos that would break your heart. And no one can figure it out. And then more doctors. We go to the GI. Another belly x-ray. Another bowel clean-out. This is not normal. Why is this happening now?  Mirilax. Ever 30 minutes. We do rainbow colored Gatorade to mix it with. These are our weekends. I woke up on my birthday in October and had to figure out how to give Vicki her first enema. And then spend 2 days doing a bowel clean-out. And then having Vicki not be able to go back to school. And then it turned into 2 weeks at home. Then the next time we go to the GI, Same thing. And then I have the same fears... what if I can't get her back to school again? And then, even just last week, we went to see an immunologist. Getting out of the van was so hard for Vicki that as Daddy was getting her out, he fell backwards and landed on the sidewalk. It shook me to the core. Daddy was ok. But oh, my, gosh... what do we do? What do we do when Daddy can no longer get her out of our van?

And the waiting. Waiting is exhausting. I never realized how exhausting. And I think it's bad waiting for her to get out of the van.... And then it started at home. Hesitation more with any and all transitions. From the couch to the table. Waiting. For her to come out for dinner. Waiting for her to take a bite. Waiting for her to go to the bathroom. Waiting for her to get out of bed.And she wants to do it all. We know this. We see this. But she can't.

One of the hardest things right now in our house is bedtime. I will describe it in more detail later if you want, but every night Vicki waits to sit down on the toilet. She stands naked in the bathroom. Sometimes for hours. One night it was 5 hours. Some nights its 30 minutes. Some nights its 2 hours. And Vicki is so obsessed with time now. She will tell us a time when she will do something. The anxiety she has standing and waiting. It's like she wants to sit down but she can't. One night she said 10:22. And when it hit 10:22. She sat down immediately and peed and then went to bed. And the relief on her face was so evident. Some nights that doesn't work.

It's the not knowing how long every thing will take.... Will she be up 5 hours at bedtime tonight? And then we turn around and stress about whether she will be able to get up out of bed or get through her morning routine to get on the bus for school.

I'm all over the place. Sorry. Sitting back and re-reading this... I sound so selfish. It's all about how it has affected me. And it's not about me. It's about Vicki. It's about her quality of life. Her smile. Her happiness. I want it back. I want it back so desperately.

I've learned a lot this year. I feel broken. But I know I'm not. I'm still here. I've found strength in so many places... from my best friends who will sit up with me via chat until 2 in the morning and talk me through Vicki's bathroom cycles so that I know that I am not alone... to people reaching out to help so that Joe and Ally can still have a childhood and be a part of the community and seek comfort in friends. I've learned that asking for help and being vulnerable may suck, but I know I can't do it alone and I am forever grateful that I don't have to.

Eh. That's enough for tonight.I can't write anymore. Gotta save some words for the rest of the month. I love you all.Thank you for being here. xoxo


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