I don’t know what is wrong with me. Time is catching up with us, and I’m treading water again, wondering if I need to increase my antidepressants, or sit in the sun, or stand in the dirt with bare feet. Maybe I need to bake a cake, or learn to run, or swing upside down again. Maybe I just need a moment of peace, a breather, where I can forget about the myriad of appointments coming up, and everything I have to do.
Evelyn’s swallow study is booked for early next week. Amy’s theratogs are ordered and will arrive soon. We’re braced up and strapped in and I’m falling apart here, mentally and emotionally.
Everything hinges on the next appointment. We can’t look back and wonder what we might have done differently, when we’re too busy trying to get through this moment.
We got through Eve’s EEG without any dramas, and with lots of twitching. Now we wait for the neurology team to read the results and get back in touch with us. Are they seizures? Are we looking at a movement disorder? Can someone please tell me why my baby twitches like a dreaming puppy? Why she can’t sleep without jerking herself awake? Why she can’t swallow anything anymore?
Everyone is stumped, confused by this child. She looks so good, and yet, the issues continue.
She pulled up to standing this morning and distracted, forgot to hold on. For a very long second, she stood there, alone and unsupported, before realising and sitting back down with a start. I applauded. She applauded. We all applauded.
Her shoulder clicks and her knees dislocate and I am exhausted. It’s a marathon, having a baby who isn’t quite normal.
(But at least we’re at home with her, not stuck in hospital)
I’ve had writers block and my brain exploded all over the floor, unable to cope with the pressure of my thoughts and no release valve. I’m trying, trying oh so hard to work out what I need to put in place to keep myself sane, but I’m three steps behind and I can’t quite catch up. I’m forcing myself to write, to listen to music, to dance with the baby. I can’t be all the things to all the people, so sorry, fuck you. My energy is limited and you can’t have it. Go away. (But not you. I like you.)
I’m anxiously waiting for Spring. Even with a mild winter, there isn’t enough sunshine (never enough sunshine) and I just need to be able to breathe again, and watch the trees bud up and the plants grow. Maybe photograph a frog that hasn’t been mauled by angry kittens.
Can someone please just book me a holiday please. I’m ready to be done.
/brain dump
Lady I never know what to tell you, except that you’re coping better than what I would have. Just try to have faith! (((Hugs)))
I read through a recent post where you said both you and Evelyn are anaemic and taking iron supplements. I’m wondering with your low energy levels if you aren’t deficient in vitamin Bs as well. could you perhaps try having a teaspoonful of Malt Extract every day? See if it helps? it’s available in supermarkets near the jams and honeys. it has Vitamin B1, B2, B3, B6 and B12. The label reads “natures own pick me up” no artificial colouring, flavouring or preservatives and is GMO free. I’ve been having a spoonful a day as long as I can remember. Usually stirred into my porridge, but just a spoonful straight from the can if I’m not having porridge. It’s a thick syrup, made from barley.
My health book also states that Iron needs a copper catalyst to be properly processed and utilised by the body. Foods containing trace amounts of copper are leeks, garlic, parsley and broccoli.
Oh sweetheart. Sending you all my love and strength. I know it doesn’t feel like it right now, but you’re doing everything you can, and that’s totally enough. *hugs* xx
((Veronica))
Sending love and strength.
I don’t know what to say to you other than you and your beautiful family are in my prayers.
I got halfway through reading this and wished I could send you and your family somewhere warm and sunny for a break. I hope someone is looking after you x
Hmm … some of this post I could write myself.
I’m feeling much the same with some of the things I am dealing with…
I love my children, but why oh why is parenting so damn hard ..
Sending you hugs xx
PS I want a holiday too …
Sometimes people can build up a tolerance to anti-depressants, it is certainly worth exploring further. The B12 comment was a good one too, B12 can even have a beneficial effect on someone as mental as me sometimes 🙂
Wishing you bluebells and sunshine and warm, nourishing days.
Geez, V, what on earth is wrong with you? I mean, you have one of the easiest lives ever.
You know, any one of the health issues you face in your family would be enough to un-do some people. And yet you battle on, with issue after issue, and no answers or end in sight. YOU are always the one picking up everyone elses’ pieces. And who picks up yours?
One thing I learned over the years, is that when you’re drowning, you don’t need to have to tap-dance for an audience as well. If you need to tell people to go away, then do it. If you need to rant here, then do it. Whatever you have to do to get through, then do it. If people don’t understand, screw them. They’re not living your life.
I agree with the vitamin B comments. I take it daily, along with iron and magnesium and fish oil. Some days I feel like I will start rattling. But it (B) does help. I notice the effects if I forget.
One last thing — TS Eliot said, “If you aren’t in over your head, how do you know how tall you are?”
Lady, you are TALL.
X
ERRR — that opening comment was MEANT to be sarcastic, BTW.
Thinking of you. You are one strong lady!
Do whatever it is you need to do to get through. You are working so hard for your family and your beautiful baby girl. You have my love, friend.
I had a year somewhat like that, all the kids getting sick, having hospital stays and appointments, and even the sleep-deprived EEG test. It was the hardest year with them ever. You deal with this EVERY day, with all of your own health issues. If the treading water gets too much, ask for a life raft from someone, anyone. You are amazing.
I’m sorry to hear that things are rough…but happy to hear that the baby is pulling to a stand!
Normal’s boring anyway. I think this weird, superhuman unwavering focus on the next thing is part of it, sort of a rhythmic chant: keep it going keep it going keep it going.
It sounds like you’re doing just fine, so long as you don’t slip on those exploded brains… good luck.
I’m clapping Toni’s comment. Any one of your problems right now would floor the rest of us. Hang in there. I think of you, and that beautiful Evelyn, quite often. Keep us posted on results. I read an autobiographical book recently where the author mentions in passing that her baby brother suffered regular seizures when he was a baby and then one day they just stopped. And I was thinking and praying ‘Please let this be Evelyn, too’. I know you can’t rely on anecdotal stories like that, but I do so want this to be the outcome for you.
I keep recalling Baba Ram Dass’s “be here now” it seems the hardest thing to do, and difficult times seem like watching paint dry.
Your writing is your “be here now” card and I am glad you continue to do it, for me art has the same bitter sweet solace, your self expression is your strength and gift.
The everyday simple chores, the domestic calls to your time keep you moving forward, as does the walks, excercise and interaction with your children, yoga. meditation,music and other things that you are doing.
You are a good mum,wife and daughter.
Watching your children in difficulty is not at all easy, yet you continue on, in good hope and that has healing benefits, yet, not obvious, but there.
However-
Even if it feels like you are drowning and it feels like it’s all out of control you have the survivor’s capacity to hang in there just by the will power that has got you to where you are now.
And I know that you are surrounded by love.
Not knowing answers is shitty, the future not being the present
Paradoxically the suns rises up again and again , you curse it, but it brings you closer to the answers in time.
For now the anti-depressants are important but they won’t stop some of this pain.
The answer will come because you have strong intentions of seeking them.
The advice on the Vitamin B ‘Malted Barley” is good. Even “Rescue Remedy” (Bach Flower Remedy) is helpful.
With no intention to cause further worry, I would probably, might suggest, checking on lead poisoning maybe from old paint or check the history of your property or surrounding environment for other toxins leaching in soil or water supply, just a passing thought.
Your strong mind, will and your huge capacity to care will carry you through , not easy,- but you have proven time after time that you can do it- you have a warrior’s spirit.
Above all be kind to yourself .
I wish you well and hope the universe delivers.
Just sending you and your lovely family lots of hugs right now.
sending hugs and wishing that the warmer weather with lots of sunshine would hurry up and come along (((hugs)))
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