i'm mad about you. mad about those sea-blue eyes, your smile, and the little crescent dimple it makes. i'm mad about the way you look into my eyes when we're right up close. i'm mad about the way you hold my head and touch my face. i'm mad about the way you send me reeling. mad about the way you deepen all my feelings.
i'm mad about you. mad about what happened. i'm mad about the way the seizures and the drugs waste and rule you. mad about your suffering, your deficits, your mania, your biting and banging, your drool. i'm mad about the fact you can't speak. mad about the way you wail and shriek and moan. mad about where you send me when it's to a place i loathe.
i'm mad about you. mad about the way you age me. mad about the way you wake to slay me. mad about the way you box me in and limit me. mad about the way you consume me. mad about the way you can never leave me be. mad that i can't leave you, either.
years ago, in tears, i called a friend, searching for a trusted someone with whom to share my woes. at first she listened. then she made the claim—perhaps meant to ease my state—that the universe tries to find equilibrium. and though it's noble hoping, i'm fairly sure that isn't true; rather (thinking of calvin) random chaos rules. she hinted at my anger since your birth, then went on to speak of acceptance—of you. i told her i was capable of holding both emotions. later, in a message, she wrote:
my intent is unwavering, which is simply to love and support you.
i replied:
i know. xoxo
that was the last i heard from her. funny how some people's universe works.
i accept you. yes. i'm mad about you, too. mad about the way you make me swoon. mad about your soft skin and freckles and locks of auburn hair. i'm mad about the way you make me laugh and rage and fret and weep. mad about the every way you make me think and feel and dream.
 |
| many moons ago. |
This is exquisite. I think you and Calvin are just beautiful.
ReplyDeleteblush.
DeleteHi! I'm a single, no kids, 34, Peterborugh UK dweller de-lurking to say that I agree with Joanne. On the face of things we don't have lots of common, but I do love to swim, especially open water here: https://lakeashmore.co.uk/. It's great seeing your landscape in your photos. So here is part of mine to share.
ReplyDeleteJoanne is right, your writing is exquisite. You capture the (sometimes extreme) reality of life as a carer of someone with a severe disability in a way that is raw and honest. Your love for your family is always present, even as you express these realities. Much respect to you for this.
I can relate to your feelings about entropy in the universe, how else do the shitty things keep piling on, at times with no let up? It's also so possible to be incredibly pissed at a situation, yet at times count your blessings and see the silver linings whilst still having to live with the relentlessness of it all.
I've found with friends that those who have had things mostly work out for them can't relate. They don't understand why the situation can't just be made better and the need to vent frustrations about the shittiness whilst knowing it can't change and still finding grace and enjoyment where possible. I've lost a few friends over that one.
Hugz to you, Calvin and Michael
Steph
dear Steph, thank you so very much for your kind sentiments and insights and the way you expressed them ("the shitty things keep piling on ..."). you totally made my day. I wonder, how did you come upon my blog? are you a carer of someone with a severe disability? hugs back to you steph. I am very grateful for you, even though we've never met. xoxo, christy
DeleteHi Christy
ReplyDeleteYou totally made my day by writing back. Funny how that works isn’t it? I’ve often thought about commenting on your blog before, but there hasn’t been a lot I can say. It’s been wonderful to read your words, but relevant comments have been difficult to phrase as it’s outside the window of my experience. I’m so glad there was some commonality in this post. I am grateful for you too.
In answer to your question I happened upon your blog through “A Moon Worn As If It Had Been a Shell” written by Elizabeth Aquino. How I happened upon her blog I couldn’t tell you, I’ve been reading for so long.
I read a fairly eclectic mix of blogs: Kellogsville (girl guiding based in the UK, even though I’m not a Guide), The Frugal Girl (Kristen in the USA), Yorkshire Pudding (retired UK English teacher writes about walking and family), Nie Nie Dialogues (Mormon Mommy Blogging, I know, but it’s so interesting how she presents herself), Going Gently (John, a hospice nurse in Wales with a menagerie of animals), 37 Paddington (Rosemary, a book editor in New York), Sustainable Cooks (good recipes and family life bits and frugality of course), Cup on The Bus (Joanne Noragon a retired weaver who was living with her Grandkids, now weaving again after a TBI), Runs for Cookies (Katie, maintaining a 125lb weight loss), Going Country (Kristen living a rural life in NM, USA), Becky at Home (Frugal living again), was this in the plan (written by Steph Nimmo, now a book about raising Daisy who lived with a life limiting condition). Eden Mariott Kennedy (Fussy, good sarcasm and funny stories about her family).
I guess I like knowing about people and what they get up to. I read a lot of books as well (always have). It’s been eye opening (cliché I know) to read about the experiences of the disability community. I’m glad to know some of how other people are forced to live (on the margins often) and hope I can incorporate what I know to help someone at some point, even if that is just to be able to empathise.
To answer your second question; my immediate and extended family has always had mental health issues to some extent, but I don’t care for someone with a severe disability. I guess there is some caring involved there, but it’s of a different kind. I have friends who have either worked as carers for children/ adults with severe autism or have a child with severe autism. That is as close to severe disability as I come in my daily life (beyond saying hello to the groups of disabled adults I sometimes encounter on my lunchtime walks).
I do care for 7 pet rats (no I didn’t go to the sewer, catch some and put them in a cage *rolls eyes and laughs*), they came from a rescue and breeder. I always wanted a cat, but was waiting until life was more settled, then I met my friends, daughter’s rats and fell in love. If I could share a picture with you in the comments I would share the selfie I took this morning of Ted nestled into my shoulder whilst I work (he didn’t want to sleep in the cage like his brothers).
I read your latest post and it must be wonderful to meet with the people that unknowingly anchored you in the pandemic. It’s wonderful to be corresponding virtually with you too.
I have a child who is going through his first ambulatory EEG tomorrow, and a Google search brought me to your blog. My child is very different from yours, but the isolation, the sense of wanting connection and finding it... wanting... in the world - _that_ I understand so well when it comes to my child. Thank you for your writing.
ReplyDeletedera julia, thank you for writing. it means so much to me. I hate this epilepsy and though I would never wish it on any child or parent, I do take solace in knowing I am not alone. your words move me. where do you live? I live in maine, USA. I hope the EEG goes well.
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