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Spiral


Some days spiral, and I don’t mean in a good way. I mean myself, my emotional sense of wellbeing and grounding. A bad thing will happen, followed by another and another. I’ll get upset, which lowers my patience and threshold to deal with everything else to come, which causes avoidable bad things. Then the day continues to spiral negatively until I find myself on the couch during Hazel’s nap time sobbing like a child.


My husband knew instantly what I needed. “Take a nap. Stop trying to do stuff. Take a nap.”


I was like a little kid, overstimulated, and wired. Kids will throw their biggest tantrums when they’re tired. I’ve been around lots of kids of every age range and I’ve yet to meet one who doesn’t pitch a fit when what he or she needs is a nap. It’s because their threshold to handle stress and challenges is wiped from exhaustion. Little ones need lots of sleep and frankly, adults do, too.


The day started before 4, like most days. We, meaning my husband and me, certainly don’t want to wake up before 4, but I guess I’m sort of getting used to it. It’s not the same as getting up at 4 on my own to slowly sip my coffee and write. Waking up to the wide-eyed faces of my children actively trying to pull my eyelids apart is not the ideal way to start the day, but this part is okay. We’re getting used to it. It’s fine.


Maggie woke up super irritable. She was weepy, whiny, clingy, then pushing me away, clutching her head... all these behaviors indicative of an upcoming seizure. There’s nothing to do but keep her comfortable and safe. She fought it and there wasn’t a seizure. Meanwhile, Hazel is at an age and stage where she hasn’t developed the empathy or the awareness that sometimes her sister needs to be held alone. Hazel will cut in which upsets Maggie and Maggie will push off because she doesn’t want to share Mommy. Because of Maggie’s condition and because Hazel and I have solo mommy-daughter time all day, I’ll unapologetically prioritize my attention to Maggie in the mornings and evenings.


At breakfast time, I made scrambled eggs. Maggie’s keto egg is mixed with heavy whipping cream and butter and her side of fruit is literally one sliced up grape. Maggie has this habit of trying to slam her hands down on random surfaces, like the wall or the floor. Before I could stop her, she slammed her hands on the stovetop, still hot from cooking the scrambled eggs.


The next two hours were agonizing. Maggie cried, and when she cries, she does not sound like a normal child. Her cries are a combination of guttural grunts and diphthongs, interspersed with a crescendo of shrieks that are unlike any cry I’ve ever heard from any other person. It is difficult to hear her cry in pain. I felt so angry with myself that I didn’t reach the stove in time to stop her. I know every kid learns the lesson that the stove is hot, oftentimes from touching a hot stove. Maggie is not like other kids.


I tried everything to soothe her. I ran her hands in water, both lukewarm and cold. I pressed an ice pack wrapped in a hand towel around her hands. I held her, rocking and kissing her forehead while whispering lullabies into her ear. I hovered over when she pushed me off, braced for a seizure, and ready to catch her if she’d fall. She clutched her head, clutched her hands, and cried inconsolably for two hours. It broke my heart.


After two hours, it was time to head to school (ABA Therapy). I debated whether to take her or just keep her home. In the end, I decided that maybe a change in the environment could help. Nothing at home was working. I planned to drive her and Hazel to school and if Maggie was still upset by the time we got there, I’d explain the situation and take her home. Maggie calmed down in the car and when we got to school, she was ready to go. I explained what happened and asked to be called if Maggie needed to go home.


So much is about Maggie, of course. It should be. She’s the one struggling with Lennox-Gastaut Syndrome, and she’s the one who needs the attention. Sometimes, as Mama, I struggle. I put on a brave and happy face for my children, but on days like these, it feels like grins through clenched teeth. My next mission was bureaucratic, but it needed to be done and rather than waiting through emails, I was going in person to get what I needed.


Because of some form missing an official stamp, I was told Maggie’s ABA therapy benefits would expire in December if this paperwork issue wasn’t corrected. I had submitted all of the correct and completed forms months ago, but it needed to be properly stamped by one office before moving on its merry way to more offices. I spoke to the person who was supposed to stamp it and she showed me in her computer system, clear as day, the documentation submitted by her months ago, properly stamped and endorsed. She let me keep a copy of the stamped document so I can forward it myself.


Hazel and I got home, and the scanner wouldn’t work. I took a couple of deep breaths, figured it’s due before December, I’m going to work out and reset. I turned on the PlayStation (which is how we access all of our media), ready to take out my frustration in a high energy kickboxing routine (not my usual go-to. I opt for kickboxing when I’m mad and want an excuse to punch and kick the air). This is a fun routine to do with Hazel because she’ll imitate the punches and kicks. Alas, the PlayStation wouldn’t turn on, then it had an error message. I looked up what was wrong and the internet warned against the blue light of death, clearly emanating from the PlayStation.


Okay. Lunch. We’ll have lunch. So I make grilled cheese on gluten-free bread. I’ve made this countless times with no trouble, Hazel eagerly gobbling it up. Not today. Before I could stop her, she threw her lunch down and before I could stop Khaleesi, she gobbled it up.


I was done. I took Hazel upstairs for her nap and closed the door. I needed to step away. I needed, I didn’t know what I needed, but I needed this feeling of suffocation to go away. I needed to not feel like I messed up as a mother with both of my kids.


Andy came home for lunch. I’m so glad he did. He’s my rock. He did a factory reset on the PlayStation. He also gave me the advice I needed at that moment.


“Take a nap,” he said.


Hours later, I picked up Maggie. She had a few seizures at school (which are typical), a couple of extra-long naps after each seizure, and besides a tinge of redness, her hands look fine. She had a good day at school and I had a better afternoon with my Hazelnut.

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