I’m exhausted. And as I write this, its only Monday and I have a whole week ahead of me. It has been a long, hard day and it has followed a long, tiring weekend. Right now, all I want to do is climb into bed, pull the duvet over my head and sleep until I’m not tired anymore, which is a very, very long time.
Lil Z has been going through another rough patch. Although in the past year she has had so many rough patches that I’m beginning to wonder if rough is the norm with occasional good patches instead. She whinges, she cries, she scratches furiously at her ears, she refuses to take a bottle or her meds, she rarely makes eye contact (in fact, she doesn’t always even open her eyes) and she almost never smiles.
I hug her, I kiss her, I rock her, I hold her a million different ways to try to settle her, I put socks on her hands so she can’t draw blood when she scratches her ears, I stroke her hair, I am constantly washing, preparing, offering new bottles to try to encourage her to eat, I move her constantly from the floor to the bouncy chair to my hip to keep her from crying.
I love her unconditionally, but it is hard when there is so little received in return. Not so much as a smile most days. I am angry because this is not her – it is the meds that are tampering with her brain. Each anti-seizure medication takes something in return for preventing seizures – making her sleepy, depressing her appetite, making her grumpy/unsettled/frustrated, causing headaches, and who knows what else. And I am worried because at some point we may have to sacrifice the happy little person that I hope (rather than know) is in there for a less happy little person with fewer fits.
Work is sometimes a welcome break for me, but Lil Z’s schedule of doctor’s appointments, therapy sessions, vision and hearing assessments, and special needs playgroup has left me wondering how I’m going to actually get any work done between now and Christmas.
This weekend, I told QB that I just wanted one day where I wasn’t a parent. One day where I could sit and read a book or watch whatever I wanted on tv without worry or interruption. One day where I didn’t have to catch vomit in a bib and then try to figure out what to do afterward (you’ve now got a bib, still attached to a child, that is full to overflowing, and you can’t move because you’re holding it). One day where I didn’t feel a twinge of anxiety every time Lil Z refused a bottle. Unfortunately, it doesn’t work like that. Instead I got an hour at the park, going cross-eyed by trying to watch Vegemite and read Facebook on my phone at the same time.
I know I’ll pull myself out of this demoralized slump. Lil Z will smile at me and make me feel like suffering the screaming and crying is worth it. The appointments will make me feel better – because talking to Lil Z’s great medical and therapy team always does – and I will manage with work or put in some hours in the evening. But at the moment, this job simply isn’t any fun. I feel like a mother who is failing to thrive.