So here it goes. One of the most emotional, raw posts I have ever made. Things are going on with Vicki that I can't even begin to describe in depth. And I'm not sure why I am even trying. I just need to. For me. So please bear with me as I bare my soul.
You know, it's one of those things.... each person's situation is so different, and so unique. Each person's struggles are their own. It doesn't matter how big or small, how silly or insignificant, or how traumatic and life changing you may think a struggle is. It's real for that person. I'm not quite sure why I'm babbling about this. I think it's because I don't want to sound like I am taking for granted how blessed I truly am. And I don't want to make my struggles sound like they trump your struggles. Because they don't. They are just different. With that being said... here's my description of Vicki's SIB (self-injurious behavior).
It started back on June 2. It lasted about an hour. It was awful. Awful isn't a strong enough word. It was like it came out of the blue. My husband and I didn't even register what was happening for a second.
You know how, as a parent, you can distinguish different cries from your baby. Different screams. Different sounds. You know exactly what they want/need when you hear that specific sound. It's the same with Vicki. She has a lot of different screams and cries. She has been screaming a lot more in the last few months. Most of the time it's in response to something I ask her to do/not do. But this scream... this scream is so different. It chills me to the bone. It scares me. It's multidimensional. I wish I could describe it better. Yes, it's loud. But it's more than that. It's like it's coupled with such an intense fear. And I can see it in her eyes. It's wild. It's primal. It's got fear and anger and sadness and confusion and rage all in one sound.
Ok. So, I've established that she is screaming through this ordeal.
She was in the living room the first time it happened, sitting on our toy box footstool and the kids and my husband were in there watching tv with her and I was cleaning up the kitchen from dinner. Vicki started screaming and reached up and hit herself in the head with her hand. It was so quick that it didn't even register at first. I think Joe said something to her, asking her what was wrong. Then she hit herself again with an increased force and both Joe and my husband lunged toward her. It kept going. Vicki is so strong. My husband kept talking to her trying to soothe her. And he was holding her arms down so she couldn't hit herself. Vicki's arms and legs were flailing so violently and she was screaming and shaking her head back and forth. I grabbed Ally from the living room and Joe took her up to his room. I stayed with them for a few seconds to make sure they were ok, for the moment. I was shaken up. Joe and Ally were shaken up. Ally and I were crying a little bit. Joe was so worried. What's wrong with Vicki? Is she going to be ok? All I could do was reassure them that Daddy was taking care of her and we would help her through it. Thank God for Joe. He kept Ally in his room for about an hour. Just playing with her and keeping her mind off of the noise and the chaos downstairs.
Now my husband is a very strong guy. Former football player, former wrestler. He knows how to move and how to pin someone down. And he called upon all of his knowledge and strength to get Vicki through that hour. There was nothing really that I could do, except pray and check on Joe and Ally from time to time. I felt so useless. And when I would look into my husband's eyes, I saw such pain and anguish. Not something I ever wanted to see reflect in my husband's blue eyes.
Now to try to describe this SIB better. I know I don't have to. But for some reason, I need to. I'm not really sure what writing it down accomplishes. My husband was able to move Vicki from the footstool to the floor and I moved everything away from her. She kept up that heartbreaking scream. It was so guttural. And she was mad. Or I don't really know what she was. But I know that she wanted her hands free to continue hitting herself. It was like she had this need. And when she couldn't move her arms to hit herself, she tried her legs, she tried to knee herself in her head. She tried to kick. She would lunge her head toward her arms and try to bite herself. Yeah, that's about it. This vicious cycle happened for at least an hour. And every time my husband tried to loosen his grip, she kept trying to hit/bite herself. He was basically straddling her trying to keep her safe and keep her from harming herself.
It was so terrifying. We kept talking to her to try to soothe her. And when we thought she was finally settling down she would ramp up again. Giving her the freedom to move her limbs was so hard. When she was finally able to stand up, it was so hard. When we took her to bed, it was so hard. And a few times throughout that process she ramped up again. It happened again in her bedroom right before bed. She hit her own head so hard with her hand. Every once in a while she would connect. And that was that. We watched her on her monitor all night long. We comforted Joe and Ally. I cried. And the next day, you would never know it happened. I kept waiting, watching, praying.
Now, we've contacted all of our doctors about this terrifying behavior. I wish someone had some answers. Do I think it could be medicine related? Yes, absolutely I do. We are looking into everything we can think of. You want to know what is horrible? I don't like medication. Never have. Don't like to use it. It's been hard for me to try pharmaceutical management for Vicki. How do you know what helps? What makes things worse? If this is a side effect of an anxiety medication, it makes me feel horrible. What if trying to help her with one thing has made something else wrong? What does Vic feel? Oh God, what I would give to know.
Fast forward to Saturday night, July 18. We were sitting down at dinner. Vic started crying a bit. Off and on. That's not unusual. It's heartbreaking, but not unusual. But then we started hearing those screams. It was the same scream. We just knew. And my husband jumped into action. Joe grabbed Ally and went to another room. I tried to make the area safe around Vicki. It was the same, except more awful. This can not be the new norm. The initial episode didn't seem to last as long. It was like she stopped herself. We gave her more room to move. She got up and took her plate to the kitchen. And then in one quick motion she leaned forward and bit herself in the palm of her hand. My husband grabbed her and tried to pin her arms down, She was thrashing her head around. Screaming. Trying to get her mouth to connect with her skin. Anyway she could. She kept moving her head and her little Pocahontas braids were flapping back and forth, she would latch onto one of those and try to bite her hair because that's all she could get a hold of. She calmed down and sat in the chair in the living room. She kept looking at her hand (thank goodness she didn't break the skin, but there was a bite mark there). She asked for cream and a Band-Aid and then for the doctor. Her hand hurt. We put on a cooking show to try to get her to stop thinking about it all. My husband sat right next to her. She kept picking at the band aid then would try to make marks on her forearms. And although she wasn't thrashing around so violently, she kept trying to bite herself or hit herself. And it got even scarier when she went up to get ready for bed. I was so afraid to let Vicki sit on the toilet because she was still so unpredictable. The fear that this kind of behavior instilled in me. I can't describe it. My reflexes are not super fast. What if I don't reach out in time. What if I can't block her? Yet again, it was another sleepless night watching the monitor.
I was hopeful that it was again a one night episode. But, same time, same place. At the kitchen table. This time right before dinner last night. That scream. Her body. Her eyes. It's not Vicki at all. How the hell do I help her? This time she had her fork and a butter knife in hand. Thankfully we got it off of her, and the only causalities were the butter container being thrown across the kitchen and a glass of water thrown and spilled. I will take that. As long as Vicki is safe. This time Joe wasn't home. He went to Boy Scout camp for the week. So Ally was on her own. I grabbed her plate of spaghetti and meatballs and ran her into her crafting room. I ran back out to help my husband get everything safe for Vicki, and then went back in with Ally. She was crying silently, her little shoulders hunched over, shaking. No one should have to see this. No one. No one should have to experience this. Not Vicki. Not my husband. Not me. And not a 10 year old child. Ally and I sat and talked at she ate by candlelight. We watched you tube videos on how to make some Barbie food. We snuggled. And we cried.
So that's where we are. I have been watching the monitor all night for Vicki. She's all snuggled up in her blankets holding Layse black cat, sleeping I think. I've been watching her sleep on the monitor as I type this this morning. I have more phone calls to make to the doctors, more questions that no one seems to have answers to. And so much fear and sadness. Please continue to keep Vicki in your prayers. Please let this SIB be over. I will be waiting and watching and holding my breath all day.
I think this may be a first. I didn't crack a joke at all. I can't smile. I can't laugh. This was really hard for me to write. This stuff is horrible. A living nightmare. I can't imagine what others go through who have severe SIB all of the time. Thank you so much for listening and for reading and for being there to comfort me. It means the world to me. I will draw on your strength and your prayers in the days and weeks that follow. xoxo
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