I had another meeting yesterday. The amount of meetings you have to have in order to continue receiving needed services is sometimes staggering. Between the many different services Vicki needs, it's hard to keep up with what needs to happen when. Triannual meetings. Yearly meetings. Quarterly meetings. Meetings when difficult situations arise. Meetings for this, meetings for that. Meetings to schedule a meeting. Daily communication briefings. And that's just for 1 service. Another one has 3 different levels of providers that I have to meet with, daily, bi-weekly, monthly, quarterly and yearly for reviews. And another service provider monthly, quarterly, yearly reviews. Different types of questionnaires each time. Discussions of goals, of behaviors, of plans... You get the picture. Anyway, one of the questions on one of the numerous questionnaires {where you have to answer always, sometimes, kind of, maybe a few times, never, who knows, I wish I could ask Vicki questionnaires} always gets to me. It's the question about self-harm. That question hurts.
In the past, and I would venture to say some of it was a side effect of a medication, she has had some aggression/self-injurious behaviors occur. And those were hard. Mark had to basically hold her down so she couldn't hit herself in the head repeatedly. Those times were so difficult to watch. And there have been other times. Where it comes out of the blue. She has bitten herself before, and she has taken her hands and hit herself on the head, both open and closed fists. Those times are hard too. And I'm grateful they don't occur frequently. But now I have to answer the self-harm question as occurring daily. And I am heartbroken every day because of it.
The only thing that I don't mind about trichotillomania is saying the word. It's kind of a fun word to say. It kind of rolls off your tongue. Besides that, I hate this disorder. Hate it. Hate it. Hate it. And Vicki has been dealing with it since October 14, 2016. That's the day she started pulling out her eyelashes. At first, it was just the upper eyelashes, but it soon became the lower ones too. And that was hard. And then on May 21, 2017, I went in to wake her up for school. And I looked at her. And I knew something was different. And I just looked at her. And then I realized. And the heartbreak of realizing that she pulled out her entire eyebrow almost made me throw up. And we tried so hard. We slept in with her that night. We blocked her hand every time it went up to her face. And I cried. And we took turns. And two days later she got to her other eyebrow anyway. At first, it was just half of it. And then it was all of it. It's like, I thought if I could just save that little piece of her eyebrow, then maybe it would be ok. Maybe it was a fluke and she would stop. It wasn't and she didn't.
I don't consider myself to be a vain person. So, I don't think my heartache is a purely superficial thing. But I would be lying if it wasn't a tiny part of it. It's everything wrapped up into a pile of little hairs that I find on her bedsheets. The pain that she must be feeling. Both from the actual pulling of the hairs to the compulsion to have to do so. To the level of stress and anxiety that she must feel to do that to herself day in and day out. A few tears are sliding down my cheek right now just thinking about it. I want so badly to take away the hurt and pain and feeling of such anxiousness for Vicki. As a mom, I get that lump in my throat. I am heartbroken that she is hurting. And I can't seem to help her. And it's a daily reminder. Every morning when I go in and wake her up it shocks me all over again. It never gets easier. Every damn day I draw her eyebrows on. Every day I have to hold back the tears as I try to get a decent arch in the brow. Every day. The level of sadness I feel is overwhelming, I can't even imagine how Vicki feels.
Her eyelids are significantly swollen at least 2-3 mornings a week. They are red sometimes. She gets more goop in the tear duct areas now. Eyelashes play a crucial role in protecting the eye. And hers are gone. And that increases her risk of infection. Some days I see a little bit of regrowth. I'll see a few lashes start growing back, or little bits of her eyebrows, and I feel encouraged. But then the next day, they are gone. And I cry again. How long until she is unable to grow the hair back? Will she ever be able to stop? Will I draw her eyebrows on her until the day I die?
We've tried a lot of things in the last 2 and a half years. Antibiotic ointments, vaseline, different types of fidgets, redirection, etc... You name it, we've probably tried it. She pulls at night when her head is under the covers and we are sleeping. But she is not. She is silently pulling. And I am silently crying. Every night before bed she wipes her eyebrows off with a wet wipe. And every morning it shocks me when I look at her face. Sometimes when I am looking through old pictures, I see one where she is smiling, and her eyes are smiling, and she has beautiful long lashes, and her eyebrows are adorable and bushy. And I long for that day again. I know. It's just hair. But it's not just hair. It's so much more.
And that's not all. She's had periods of times when she has pulled from her hair on the top front of her head. Her beautiful long curly hair. I am grateful that she has only pulled little patches, where unless you are looking, you might not notice it's gone. Some of that hair is growing back now and she has little curls springing up that look like bangs.
And that's not all. She has pulled from her private area. I can't imagine the physical and emotional pain she is experiencing to do that to herself. She can't tell me, and maybe I really deep down don't want to know. I don't know if it's because she's anxious, or has a hard time feeling stuff, or simply gets some enjoyment or satisfaction from it. Is it soothing? Is it painful? Does it fulfill a rigid routine she has playing in her head? Just a few weeks ago when she had her seizure, she was in the ER and 2 nurses were helping me change her clothes because she lost bowel and bladder control with that seizure. You know those lights in the ER? They are so bright, and you can see everything, and it always illuminates your skin in unflattering redness and splotchiness. As we were changing her, we had all looked down, and I could see just how much she must have pulled the last few nights. It was red and looked so irritated under those damn lights. And we all just kind of gasped and they murmured, poor sweet girl. And I let a tear escape.
So, yeah. I hate questionnaires that make me relive this horrible type of self-harm more than I do every morning when I wake her up and have to draw on eyebrows to start the day. Every day. And every day I pray that I can find a way to help her. Some days are just hard and I just can't sugarcoat it anyway. It's just hard. Love to you all. Thanks for listening. xoxo
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