I have been sharing personal essays on my journey with autism with my children, on mom life, grief and mental health. Most essays are from life in 2017 and 2018. WARNING: my essays contain cursing. Click on the Essays category to read previous ones.
I spent this morning sitting by Gram’s side at her nursing home. We transferred her back here yesterday under hospice care. She had the flu, pneumonia and a bacterial infection in her blood. The doctors attempted treatment but she kept pulling her IV out of her arm and screamed she didn’t want any of it, she just wanted to be left alone and let herself fight it without any of this shit, her words, not mine. She has been quite angry, screaming a lot at us, scared too. All of this with her eyes closed, she doesn’t even have the energy to open them. Her coughing has been awful so the nurse gave her morphine and some anxiety medications today and she has been calmer. I’m taking time off of work starting today, a family medical leave, my heart is not at the preschool. Spending time with Gram is all I want to do and I can’t focus on anything outside of her and my household.
Today Gram yelled she wanted to go home and needed to pay her rent. I was not going to be the one to tell her she doesn’t have an apartment anymore and hasn’t been there since September. She was very upset about not leaving and all of us in the room cried. We told her we know, hopefully soon she would be able to, totally lying to a dying woman, and she calmed down. One good thing is that I’ve been able to spend time with lots of my extended family members whom I don’t see much of, all as we sit and help take care of Gram. We take shifts, like we are all taking care of a baby. We get to sit and talk and listen. It’s been a breathe of fresh air to spend time with them, a silver lining to all this misery.
Oh yeah and I’m fucking 40 now. I think turning 40 makes you go through stages of grief. Denial, anger, acceptance, those types of things. Late 20’s and my 30’s felt alive, having babies, careers, living different places and having a lot of energy. Now it feels like losing. I feel like I’m coming down now, depressed more. Spending my days sitting at Gram’s bedside doesn’t help, she’s slowly dying, active dying is what they call it. I’ve read all about this shit. She’s fighting and doesn’t want to die, she never wanted to. We have family members fighting it too, thinking Gram will get through this. She won’t. It’s another commercial we tell ourselves, loved one dying peacefully, telling you to let them go, they see God and are ready to die. Maybe that happens to some families and I know my mother is praying that will happen with Gram. It won’t.
Olive has been meeting with her social worker every week since I came back from Mexico. I’m angry because what they want to do with her is what I have been doing for a while, like role playing social situations and talking about what we are thankful for. It’s like they aren’t listening to me when I tell them what I have been doing all along. Maybe Olive will respond to it better coming from them and not me. I know that to be true for the preschoolers, they listen the least to Mom. Parenting is fucking tough. Marriage is tough. Watching Gram die is tough. Never mind my job being a preschool director and being the co-PTO president right now. Being a matron of honor this year too, come on with the heavy responsibilities! Please God give me the strength to get through all this.
I’ve been putting my matron of honor duty on the back burner, we still have lots of time until Ella’s wedding in May, but the mothers are breathing down our necks. Why do they choose right now to start bugging me about the shower? My grandmother is about to die. There’s plenty of time and I’m spending every extra hour with Gram and taking care of my family. Having a co-maid of honor is a blessing, she has been dealing with the mothers for me. Just like my co-PTO president picking up my slack. We all need a co. YES, co-bitches! A co-bitch for us all! From now on I’m not agreeing to help with anything unless a co-bitch is provided. Thank you God for my co-bitches right now. Thank you that I can make myself laugh.
I’ve realized I come from a long line of women who swear. I don’t remember my great grandmother swearing but Gram and my mom, oh man, they can dish it out. I grew up with that in my life and squashed it inside me for years, especially because I work with young children. It comes out in times of distress. Yup, we are there.
It’s been a month since Gram started this hospice shit rollercoaster. She has been acting like she’s suffering so we keep giving permission to give her more morphine. We’ve fought with the hospice staff a bit, some of the night nurses weren’t giving Gram her medicine overnight. My mom keeps saying she just wants Gram to be at peace with dying and I told her I didn’t expect anything different than what’s happening. Gram has lived through so much life and has a tough shell, of course she isn’t going to go gracefully and willingly into death. She’s feisty and is sliding into home plate screaming and cursing the whole journey there. That’s the way Gram. She hasn’t been talking at all now, mostly moans and groans. When I left today I kissed her cheek like usual and told her I loved her. She whispered “I love you too.” We all cried because we thought her talking was over. It was everything to me.
I feel like a loser mom. I got a call from Laurel’s teacher on Tuesday night. Red flag when your child’s teacher calls you on a Tuesday. She said she has some concerns about Laurel and wants my permission to do a screening on her with the speech and language pathologist. That poor woman, she had no idea what she was calling into! I told her about what was going on with Olive’s autism journey and Gram and basically cried into her ear. She said she has seen Laurel pull away from everyone over the course of fourth grade, even her friends, and she can go an entire school day without talking. The teachers cannot even get her to answer questions when doing one-on-one testing. My Laurel. I always figured she was just really shy. I guess it’s so much so that it’s affecting her schooling. My babies. God, I always believe you only give me what I can handle, but I’m done. Is there something going on with Laurel?
Towards the end of third grade Laurel’s teacher requested a conference with us, he wanted our advice on getting Laurel to talk to him. He needed to do a language arts fluency and comprehension test, get her level for the end of the school year. He knew she was smart and needed her to show what she had. Laurel wasn’t having any of it. I suggested lightening up the mood, make her giggle and relax a bit first, maybe even have a female paraprofessional teacher sit in, someone she wasn’t bashful around. Laurel was quiet smitten with her first male teacher and I thought that was why she wasn’t talking to him. They took my advice and it worked well enough to get a test level on her, probably not quite the reading level she was at but enough to not torture her with another test. We moved on. She was more comfortable with her female fourth grade teacher and I had no worries about her this past fall.
I gave the teacher permission to move forward. I have to give myself permission to move forward too, with knowing at the end of Gram’s life, at the end of my PTO rein, after Ella’s wedding and my girls going through this special education testing, I’ll still be alive, God willing, and keep moving forward. There’s more life, just keep going. It’s OK, it’ll all be OK. Is it bad I want to sit in a corner and rock back and forth and mumble to myself? Michael may have me committed. I’ve been using deep breathing and a glass of wine to decompress but unless I want to become an alcoholic I need to come up with a new plan for self care. It’s all too much, too many things are falling apart.