Dear Grandmaย 

These are my words I read on Saturday, at Grandma’s service. I miss her so much. Not having Grandma and Grandpa here makes me feel lost. I told Bea it’s not like I lost my parents, but I lost something more than “just” grandparents. She said I lost a secure base, the people who have been my safe place since childhood. Some children run to their moms or dads. I ran to grandma or grandpa. I’m so lost right now. 

Dear Grandma,

I wanted to write the best eulogy ever for you. I wanted to make sure that everyone at your funeral knew what an amazing person you were. But every time I tried to write, the memories got in my way. And then I realized if those people are at your memorial, then they knew you and they all know how much goodness and light you had within you. 

The essence of a person is in the details. These days, that’s where I find your memory lives, too. In the morning, when I’m mixing eggs for breakfast, I remember your smile and patience as I “helped” you to make breakfast. I can picture you and Grandpa sitting at the table, listening intently to whatever I had to say. If someone had something they wanted to share with you, you always took the time to listen. When you turned your attention to someone, you made them feel as if they were the only thing that mattered in the world at that moment. 

The other day Kat (my daughter) needed a skirt for her outfit, so we got out your sewing machine. Working with her on that skirt, I could so clearly feel the love and care you showed to twelve year old me as we made a skirt for one of my dolls. You somehow saw past the mistakes and deemed it beautiful. In fact, you called it perfect. I don’t know how you did it, but you always saw the beauty in everything and everyone. It’s a rare gift to see the world like that, and everyone who knew you is blessed to have had you in our lives to show us the beauty that exists in all things. 

Growing up, I thought all my cousins– from both sides of the family– belonged to you. That’s how you were: if a person was important to someone you cared about, then they were family and that was that. When I introduced my then-boyfriend, now-husband to you, he called you ma’am. You laughed and shook your head, saying, “It’s Ginny or Grandma. You’re family now.” That was always your way. 

You taught me that family is more than blood, that family can be the people we choose to love and bring into our lives. You were a living example– for every member of the family you created– that love is what matters most. I know that we will all do our best to honor your memory and the life you lived by living in the moment, laughing often, loving one another, showing kindness wherever we can, and finding the joy in all things. 

The world feels emptier without you here. You’ve left a hole in our corner of the universe, and it’s not one that will be easily– if ever–filled. I’m trying to be brave, and to be thankful for all the time we did have because I can clearly hear your voice. “Pumpkin (pun-kin), it’s okay. Don’t waste your life being sad. Don’t you be a ding bat. I am okay.” And I can picture you, asking to see that water turned into wine trick, and enjoying a glass of dry red. I love you Grandma. Thank you for always showing up for us and for being proud of your family. We will never forget you. 

All my love, 

Alice 


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Numb

I’m too numb to even think or write right now. If you don’t see posts from me or comments from me, it’s because I’m in too much pain to focus on much of anything. My Grandma died last night. The world lost a loving, self-less, amazing woman last. 

Some things I can’t talk about……..

Trigger warning for talk about sex….

Sex is such a confusing thing to me. And shameful. So very shameful. Logically, I know it’s just a biological drive, nothing shameful there. But emotionally? That’s a different story. I don’t understand why I seek out this thing that terrifies me, disgusts me and hurts me. I don’t understand how I can want to be touched like that. I hate that I feel like half a wife because I don’t typically have sex with my husband. I hate that I am sickened and confused and embarrassed. 

The day we get back from camping passes by in blur. I know I felt bad, overwhelmed. That night, I crawled into bed and snuggled up to hubby. There wasn’t a grown up on board at that moment. Maybe the little girl, maybe a teen part, was running the show. It’s like I could see it happening, but not stop it. At first it was just cuddling, and nuzzling, but then she sat up, and straddled her legs on either side of hubby. She started it. I started it. Kissing, and touching, and she was fine with all of it, until hubby turned his focus more on her, and touching between her legs. One moment, he was hubby and things felt good and she wanted it, and this next moment, it wasn’t hubby anymore, and something bad was going to happen, and I couldn’t handle it. The touching felt nice but like it was too much, too intense and I wanted to squirm my body away, but I couldn’t. And I knew, I just knew, he was going to hurt me after this, because it would be his turn to feel good, and it was going to make me hurt. I started to cry, and scream at him to please don’t hurt me. After that, I don’t know. Hubby stopped, right away, and I hid under my blanky, crying all night. He sat up with me, but I couldn’t talk.  

And now, hubby hasn’t touched me, even to hug me, or hold my hand, or kiss me good morning. I say I hate being touched, but now I feel like he saw exactly how disgusting I am, and he can’t even stand to hug me. I don’t want to be his broken, sick wife. 

I feel like there is more I should say about this. But every time I catch some of the words I want to use, others escape. 

(Also, I’m way super embarrassed about this post, but I honestly can not sit alone with this stuff anymore right now. I feel like I’m losing my mind, and I hate this aspect of myself. Does anyone understand? Am I the only one? How do I cope with this? I’m so lost.)

In the nighttime (camping)

I hear voices, male voices. I bolt upright in bed, on high alert. My heart pounds. I can’t place where I am, I’m lost, I’m trapped, what is going on? A full minute later, I remember. I’m camping, I’m in our cabin. People are walking by, outside, and I’m safely locked inside. I’m a grown up. My husband is next to me, and my daughter is in the room opposite ours. 

Except, that doesn’t feel real. It doesn’t feel real to me at all. I feel like a child, maybe 8 years old, that is pretending to herself she is a grownup because grownups can do whatever they want, and that sounds pretty good to her right now. 

I can’t get up and go for a walk, like I would back home. It’s not safe to go walk outside when it’s dark. (In retrospect, I’m sure it was safe, but it didn’t feel safe at the time). I get out my iPad and type out an email to Bea. I tell her exactly what is wrong, the nightmare, the fears, the feelings. All of it. And then I delete it. It’s all too embarrassing to tell her. 

I try to lay down, but I still can’t sleep. My heart is still racing, and I’m like a watch dog, scanning the room around me, listening for any sounds out of place. It doesn’t feel safe to lay down, so I use my pillows to prop myself up. I type out another email to Bea, and delete this one, too. 

I want to write about this thing that has been happening since the reunion weekend, when all the things were massively triggered. I want to write about it and I’m embarrassed. And maybe there should be a trigger warning at this point for, well, I don’t know. I guess for sex words and feelings. ๐Ÿ™ˆ

I think this is happening because I’m more present in my body, and I’m more aware of things I am feeling than I have ever been. For example, I bruise easily, and two years ago, I would bump into a corner of a table, not feel it and have no memory of where the bruise that would later appear came from. Now, though, I tend to know what caused every bruise because I feel it when I bump into things. I think this newfound groundedness is allowing me to feel my body more, and lots of those feelings are triggering for me. 

My nightmares have been causing me to wake up…aroused. ๐Ÿ™ˆ๐Ÿ™ˆ๐Ÿ™ˆ Flashbacks have also been having the same effect. Even talking about memories has been causing feelings of wanting to be touched. I feel disgusting over this. It makes me feel like a shameful, worthless whore. I HATE feeling sexually…..you know, excited. 

The worst part about these new feelings is they don’t seem to go away easily. Even when I am feeling sick and disgusting and wanting to die because of how my body physically feels, the feelings don’t go away. I don’t know how to explain it, really. It’s not an emotional experienced at all. I’m not wanting my body to feel like this. It feels almost like a betrayal, to have my body feeling things I don’t want to feel, to have the body crave sexual touch. I feel dirty and broken and wrong. 

I know sex is something that is okay between two consenting adults. I know that in theory there is nothing shameful or disgusting or wrong about having sex with my husband. But I feel wrong. I feel bad. I feel like I am disgusting for having pleasurable feelings. 

Feeling sexually aroused makes me want to hurt myself. Having sex with my husband and enjoying it makes me want to hurt myself. It all feels bad and wrong and not okay. 

I can’t even talk about it because of the intense shame and self hated I feel over this. How can I ever share this with Bea? I’ll never be able to look at her again. 

I reacted during the games that Kenny played, and I reacted when the boyfriend was….well, whatever you want to call it. Maybe I am just over-sexed, maybe I was just born slutty. I don’t know. But I reacted it, and things felt good, and it doesn’t matter that sometimes I hated it even though things felt good, because I also sought him out, I wanted him to touch me. And now, I have these nightmares and flashbacks and when it’s over, my body craves touch. But it’s not just any touch, my body wants his touch. 

I’m sick. Twisted. There is something really, really wrong with me. How does a person deal with this? How does a person cope with all of this? I’m at the end of my rope, and while Monday’s session helped some, and almost all of me believes Bea is here, a part of me also believes that if she knew all this, she’d think me disgusting and she wouldn’t be able to look at me without wanting to vomit and she wouldn’t be able to keep working with me, even Bea won’t be able to contain this. But I need help. I literally want to cease to exist when I have these feelings, and those combined with being triggered and overwhelmed and having no resources left…….I need Bea to come back soon. I won’t see her for almost a week because of her vacation. I’m also truly terrified that she won’t come back and be herself. I’m so afraid that will happen, I’m almost thinking about emailing and cancelling that whole week and the next. ๐Ÿ™ˆ

Standing up

(Wednesday of the camping trip– at the amusement/water park)
“So, let me get this straight. Just so we are both clear on what you are saying,” I say angrily. I’m standing across from the head supervisor for the water park, and I am ticked. “You are choosing to discriminate against a person with a medical disability. What you are saying is that you will not comply with the accommodations that my daughter needs in order to participate on the rides in the way all the other children are able to.” 
“No ma’am, you misunderstand, we are not discriminating against your daughter.” The supervisor sounds weary. This whole thing is because the water park doesn’t allow people to wear swim masks. Goggles and a nose plug are absolutely fine, however. Kat has to wear a swim mask because her particular “brand” of autism causes her to have many sensory sensitivities, and water touching her eyes and nose is one of them. She even wears a swim mask to shower. 

“So, you will modify rules to make them equal and fair in order to allow an autistic individual to participate in your attractions just like everyone else here?” 

“Well, no….”

I cut her off. “Then you are choosing to discriminate against my daughter.” I’m so mad I’m shaking. I’ve been flooded with adrenaline since the middle of the night last night, and have had a desire to run away since we entered the waterpark. Now, all that excess energy is being used up, fighting with this supervisor about their idiotic policy. “You are making a choice to discriminate against an individual with a medical condition by refusing to allow accommodations, and you are violating your company’s policy of *striving to provide equal opportunity to all of your guests by providing a variety of many options tailored to their specific needs.*” 

The look on her face is priceless. She seems shocked that I am aware of the company’s written policy on guests with special needs. “Okay. Let’s just take a step back and see if we can all calm down. I want to work with you, okay? I want to help make this work.” 

I can’t just automatically calm down. I’d like to, but hubby and I have been talking to managers and supervisor since we arrived, just working our way up the food chain. It’s been almost an hour. One supervisor told me that “a little water in her face really isn’t all that big a deal.” I lost it on him, telling him I hoped that one day he had a child with special needs and had to deal with idiots like himself. I cursed him with spending everyday having to fight for his child just to participate in activities *normal* kids participate in. I was livid. In retrospect, the teen was defeated on board, fueling some of that rage. 

“We’ve been discussing and fighting with you people for an hour. Do you know why we are here? For a family vacation, with her cousins and grandparents, to celebrate her birthday. Instead of enjoying her day with her cousins, she is in a hiding under a chair with my mom, buried in towels, sobbing. We came here specifically because of your policy with special needs individuals.” I shake my head. 

Hubby interjects, asking for the reasoning behind goggles and nose plugs being allowed but swim masks not being allowed. She can’t give him a straight answer, and seems a bit unsure herself of why this policy is in place. 

In the end, we win. Kat can wear her swim mask. An hour and twenty minutes after this fight started, it’s over. Hubby shakes the manager and two supervisor’s hands. He thanks them for working with us and helping us to have an enjoyable time. He’s the diplomat in the family. 

I know my mother would approve of hubby’s approach, but I can’t just go from livid and fighting for my daughter to happy and thankful. I stare at each of them with a stony look on my face. “I hope that today causes this company to rethink their policies, and to consider what it actually means to provide a variety of accommodations tailored to specific needs and what it means do truly provide equal opportunity to all your guests.” Then I turn and walk away before they can respond. 

I breathe in and out as I walk back to Kat. I have to calm down. I can’t help her calm down when I am all ramped up. Hubby starts to reprimand me for being rude to people who gave us what we wanted. I shake my head at him. “Don’t,” I snap. 

When we get to our chairs, I get down on my belly and crawl on the concrete under them to where Kat is. She’s still sobbing, her face is covered in tears and her eyes are bright red. 

“It really sucked when the life guard blew that whistle at us and told us no swim mask, didn’t it?” I ask her. 

“It did. I’m so mad!” Kat yells. 

“I know, I know you are. You know what though? That lifeguard didn’t know about autism and how everyone is different, so Daddy and Mommy got to help the woman in charge of the whole park learn about autism and sensory struggles. And after we explained to her and helped her understand, she agreed, you should wear your swim mask.” 

“She did?” Kat asks. 

“Yes, she did,” I say. 

She scrambles out from under the chairs, pulling her mask on. “Let’s go play!” She shouts at me, and off we go to experience some really cool water slides. 

I’m impressed with myself that I can stand up for Kat like this. I’m proud that I can speak clearly and make good points and help to educate people who otherwise don’t understand. I’m proud that I am able to do so without swearing and screaming. I’m proud that I won’t back down when I’m fighting for my daughter until I’m out of options. I’m proud that I have that strength inside myself to do so. 

Oliver

(Last week, Tuesday when we first got to the campground)
Driving across the state, I leave pieces of myself scattered behind. I must shrink in order to fit into the mold of Ms. Perfect. I lose pieces of myself; bread crumbs I will follow when this trip is over, to find my way back to being me again. 

I find myself becoming more agitated and panicked the closer we get. I woke this morning in a fit, scared and full of nightmares that aren’t just scary stories. It made me grumpy as soon as I left my bed. Poor hubby bore the brunt of the adrenaline pumping through my system, sending me into fight or flight mode. 

I try to breathe as we drive. I try to focus on the scenery, on what I see out the window, I can’t calm down. Hubby reaches for my hand, and takes hold. I grip his hand back. I sit like this trying to really feel his hand around mine. I don’t often allow myself to be fully present for any kind of touch and focusing on this now, I want to cry. It’s as if I can feel hubby with me, I can feel hubby on my side. It’s uncomfortable because he is here, now, but I don’t trust he will stay. I don’t trust that he is capable of being here the way I need him to be. I know as soon as I show any emotion, he will be retreat. But this display of care and support? It’s sort of overwhelming. I’m not sure what to so with it, and so I drop his hand, and drift back to far away places. 

When we get to the campground, we first have to check in at the little campground office and store. It’s the same as it was when I was a girl, and I can picture us kids running up there with our spending money to buy candy and little tchotchkes. When we get to our cabin, my parents have arrived already, but my brother — Oliver– is still on the way. By the time we finish unloading our things, Oliver has arrived. Kat is so excited to see her cousins, and we decide that the kids are old enough (his kids are 14, 12 and 10 and Kat is 7) to walk through the campground alone this year. 

Being at the campground is okay, during the day. Having Oliver there seems to off set my mother’s craziness and that helps. Somehow my conservative proper parents created two liberal, artistic, emotional, hippie children. Oliver is more relaxed than I could ever be, and truly doesn’t care if my mother approves of him or not. He never has, and that attitude helps create some balance for me now. Years ago, I didn’t get Oliver, or how he could just not care, how he could shrug off the criticisms and laugh about it. I didn’t understand, and it annoyed me. His attitude then only served to create more tension in the family because I would stick with my mom and her upset in his behavior. This was back when I was still stuck in the pattern of having to agree with my mother, so she solid be on my side. Now though, his attitude gives me freedom to hold onto some pieces of myself after all. It gives me a chance to be more myself around someone in my family. It’s easy and fun, the banter and joking and giving my mother a hard time they way only your children can. We play cards, and laugh about how my Grandpa taught us to play “bullshit”. My mother almost has a heart attack over that. 

It’s good, this new relationship I seem to be building with my little brother. We’ve never been close as adults, but we are closer now. It’s a good thing, a happy thing.

To my blog friends…..

I wanted to thank you all for your kind comments and support this last few weeks. I want to respond to everyone’s comments, I’m just in a very triggered state right now and struggling. I know I’ve been writing a lot, it helps me to sort things out and process them— and your comments and experiences you write about in your own blogs help me process things or to see things in a different light. Thank you. 

I’ve been attempting to keep up with your blogs, but commenting has proven to be difficult; I just can’t find my words right now. If I “like” your post but don’t manage to comment, please know I am sending support and hugs and understanding your way.  I care about you all and am so glad I’ve found a tribe here on WordPress. Xx

I’m struggling and triggered but I’m okay. There’s a part of me that realizes I will get through this. Bea will be back in 3 wake ups. 

Love, 

Alice ๐Ÿ’•