Essay #7: On A Hope and A Prayer

I’ll be sharing personal essays on my journey with autism with my daughters, on mom life, grief and mental health. Most of the essays are from fall 2017. WARNING: my essays contain cursing. I hope they make you smile, I hope they make you cry, I hope to spread an understanding of high functioning autism and mostly I hope they allow other moms to not feel alone. Names have been changed for privacy. To read previous essays click on the Essays category tab at the end of this blog post.

I think I am in mourning realizing my daughter doesn’t have a typically developing brain. That sounds shitty to say and I would never say it out loud but I have to be honest with how I feel. I know she’ll be an amazing adult and I have to help her the best I can. There are times I find myself day dreaming about a normal life, craving what I think an average life should be. What is normal anyway? That commercial of happiness I use to dream of? What I imagine other families to be like even though I don’t know what goes on behind their closed doors? Happiness is a choice. I have to remind my brain that I choose to feel happy. Is it OK that I have to do that every single day or multiple times a day? I can’t pretend anxiety isn’t there, it has to be dealt with, but I can choose to process it and choose to do something that brings me joy. Who finds that kind of time?

Olive is now 12 years old. My autistic daughter is becoming a lady. We had her party over the weekend. I usually tell the girls we’ll invite one or two friends to our family parties and Olive said she doesn’t have any friends and didn’t want to invite anyone. My momma bear heart was breaking for her and I convinced her to invite a girl she talks to who we have had over in the past. Glad I did because they had a great time. Olive is so convinced she has no friends, I think she isn’t giving anyone a try at being her friend. She won’t carry on a conversation if it’s about something that doesn’t interest her. I don’t see how she behaves at school in social situations and I hope the director and counselor there are paying attention. She needs some help facilitating. I can only role play so much and then send her off into the world on a hope and a prayer.

We were missing a few folks for Olive’s party because Gram needed to go to the hospital. My mom opened the door to Gram’s apartment and found her on the living room floor, confused, not sure how she got there and she wasn’t able to get up. She wasn’t wearing her Life Alert button, of course Gram. They needed several EMTs and a stretcher to get her up. The doctors found she had a UTI and a blood infection in both legs. They think Gram must have hit her head when she fell and no one is sure how long she sat on her living room rug.

I’ve been visiting her at the hospital when I get out of work and she will be moved her to a rehab place soon. For being 93 she is fairly healthy though. Her heart, brain and blood pressure are all good. UTIs make Gram confused and they have been happening to her more and more the last six months. Gram and I were chatting yesterday afternoon in her hospital room and the conversation stopped as we watched a few minutes of TV, her favorite soap opera. She looked at me and asked “So, what are we doing here?” She seriously couldn’t remember why she was in the hospital. I giggled and thought she was joking but she certainly was not. I told her what had happened and she couldn’t understand why she wasn’t going back home. I changed the subject and we didn’t revisit the conversation.

God, I need my Gram! Please, I pray, heal her and let her get back home. She is my person, the one I can call and visit in an instant, listen and talk with for hours. Now is not her time. I know everything is in your time but can we compromise here? I have enough emotional turmoil in my life, Gram needs to remain my stabilizer.

I do it to myself, I’m fast forwarding my marathon suicide. I volunteered to be PTO president. That role isn’t hard, it’s just time consuming and I get text messages and emails twenty-four hours a day. On top of everything else in my life it’s just a spinning spiral of doom. At first I thought my turnaround response time should be short, show people I care about their concerns and ideas and what my thoughts were. Now I wait until business hours, that which I have set for myself, and feel no need to explain to anyone why I did not respond immediately. They’re parents, they get it.

I’ve been thinking deeply about why, why I agreed to run the PTO. I think I wanted to feel more equal with Michael. He’s a busy thriving doctor and I wanted to be busy and doing important work too, felt as though I wasn’t living up to my full potential. I felt as though being home with my girls wasn’t significant enough so I got a job and then I felt as though working part-time wasn’t worthy enough either. I needed to be occupying my time with serious work and producing substantial outcomes for the world at large, making a mark on society and playing my part. Now, as my therapist says, God love her, I just want to protect the house. I have realized raising these children is the most important work. Discovering I have a special needs child makes it feel ten fold. Now I want to back out of my volunteer work and my job and I feel as though that is impossible to ask of both those powers that be because it is only October and I’m signed on at least until June. June! Nine fucking months away. Now I’m hyperventilating. I don’t know if leaving my job after this school year is necessary, there’s just too much other baloney right now and I have to peal away some layers. Between my house, the preschool and the PTO, I’m managing too many people at once. No wonder my hair is falling off my head like autumn leaves.

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