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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