Yesterday afternoon Evelyn was set free from hospital, with orders to follow up with the paediatric team in a week. She’s tolerating the phenobarbital relatively well, if by relatively I mean “sleeping all the time” and “looking rather comatose right now”. She is still waking for feeds, which is the important thing.
Now that we’re home though, I can feel the mental breakdown coming. So far I’ve managed to put it off with various things that needed doing, like cleaning out the pantry, tickling the older children and getting dinner in the slow cooker.
It’s coming though. The school holidays are nearly over and I’ve spent most of them in hospital with the baby. She’s eight weeks old tomorrow and so far has spent nearly as much time in hospital as she’s spent at home. It doesn’t seem fair, does it?
Evelyn might be fine. She might be terribly unwell. We won’t know until her metabolic tests start to come back over the next few weeks. I’ve spent the last three weeks helping to hold her down while doctors and nurses stuck needles in her. I’ve dripped sucrose in her mouth while she screamed until she went blue. I’ve cleaned dried blood off her tiny feet, and kissed IV bruises. I know where to find the adhesive dissolving wipes and which tapes she is allergic to. I know which of her veins will give good access and which won’t. I also know now that while doing a heel prick to get blood might sound less traumatic, it’s not and you shouldn’t do it.
Now we’re home again, waiting.
I stood under the shower last night and there wasn’t enough hot water in the world to wash the grimy hospital feeling off my skin. I soaped and scrubbed and could still feel the sweat from days of stress on my skin. I bathed Evie and delighted in the fact that she smelled like home again, not like blood and tears and hospital linen.
I think one of the things I miss most when I’m in hospital is music. Music is my sanity saver when things get hard, and you can’t exactly turn the music up loud and sing when you’re one of four cots in a ward.
Amanda Palmer released her new album “Theatre is Evil” recently. I backed her Kickstarter because I’m a fan (see, here and here) and I’m enjoying her album a lot. It’s currently the soundtrack to my mental breakdown as we wait for Evie’s tests to come back.
It’s nice to have good music to listen to while I try not to sit in the corner and rock.
Anything else you want to suggest doing to put off my breakdown?
—
[So, Evie is still seizing, despite the meds. Her eyesight appears to be sporadic, and she’s occasionally tracking with her eyes, which is so relieving to see. Of course, her blink reflex is still not great, but we won’t know if her vision is diminished, or affected by the seizures until she’s a bit older. She’s still not smiling or showing any interest in toys or hanging/dangling things. I don’t know if she’s only tracking with her eyes because we’re giant dark blobs of stuff she can see, or not. It’s going to take time to work out what is going on there, because frankly she’s too little to know anything for sure.]
I follow the amazing AP on twitter, and this is the sort if thing she loves to know from her fans, I’m sure she’d be delighted to know that she is helping in some very small way in such a traumatic time. *hugs*
Its wrong and I’m sorry you have to deal with it. I am glad you get to be at home and do * normal* stuff even if that means losing the plot
Holding your hand from afar
Lots of love and hugs
*hug*
Turn up amanda fucking palmer.
*hug*
From what I’ve learned about my own breakdowns, what happened for me was that I kept going, kept going, THEN when things started to improve and look really good, THAT’s when I had my breakdowns. Of course, this had the lovely side effect of guilt: ‘I got what I wanted, I should be happy and able to cope now!’
You will have your breakdown, and I think you will need to. Just be gentle to yourself when it happens and give yourself time. Sadly, I can’t suggest much for prolonging a breakdown. All that part is now a blur to me. I think when you don’t have time for a breakdown (as it sounds like you don’t), you just keep going. It’s a horrible place to be.
I think anything at all that gives you comfort right now or helps you to cope; you just grab it and make the most of it.
Gosh Veronica, you’re doing it tough.
Little Evelyn is a fighter and I hope the tests come back in her favour.
Please get some rest and talk to a professional if you need. Look After yourself.
Accompanying me this ‘holiday’ (*snort*) has been the new album from Catpower, “Sun”. I fricken love it. And I don’t care that it will always remind of this shitty time for all of us.
I’ll drag my ears away and get Amanda Palmer now. She is ace, so I know I’ll love it. Why have one soundtrack when a girl and her team can have two?!
Our love for you all right now remains a constant searingly hot flow. Xxxxx
Really feeling for you right now, and hope you all pull through this. Right now I’m clinging to the sentence “Evelyn might be fine”….we should all focus on this and hope for the best.
I hope you can feel the powerful vibes of loving support and soft hugs of comfort we are all sending your way throughout this very tough time.
You are in my thoughts every single day.xx
You can’t stop it. You just need to go with it.
Sending love always.
Sounds like little Evie is as tough as all the incredible women in your family. Thinking of you all Von, I just wish we were close enough to come and give you a hug. You’ve probably thought of it already, but I was wondering if its worth emailing any of the EDS specialists to see if they’ve heard of anything like this in babies or might know someone who does etc…? I’d think Brad Tinkle would be the person to start with if so.
Hugs and love, BG Xx
Hi Veronica,
You dont know me but I’ve been following your blog for quite a while and keeping everything crossed for you since you started posting about Evies problems. I have Classic EDS too,my younger brother had infant seizures,my sons had some traumatic stuff (different than whats going on for you) and I’m no stranger to the emotions you’re going through. What helped me was finding ways to let that energy out so that I had space inside to ‘be strong’ and deal with what needed dealing with without completely cracking under the strain. I don’t know your country or the geography around you but rocky coastlines and old woodlands were my saviours and soaked up many rage filled howls and helpless sobs for me. Very non-judgmental and quietly supportive are oceans and trees.. If you can bear to be away from Evie for an hour (just far enough to not freak her out with the noise) and have someone to take over watching her for a few hours after that then I *really* recommend a good ‘primal’ howlfest and emotional collapse followed by a hot chocolate while wrapped in a soft blanket and then a deep sleep. You’re a new mum with all the hormonal turmoil that brings and you’re dealing with a horribly traumatic and deeply unfair situation,breaking down is both inevitable and healthy and clearing out some of the so-far emotions makes room for whatever comes next to be manageable. And restorative sleep is necessary but probably not something youre getting in abundance right now huh. I’m aware that I probably sound like a crazy hippy (I’m not) but seriously part of coping with traumatic stuff is the breakdown part because holding it all back takes energy you need for the surviving it part. So even if the only place available is sitting in your car,with the music as loud as you can bear so you can really let rip and drain yourself of that energy,it’s likely to help more than trying to put it off. Then you can come back from that dark raw place with the strength to be the mum you need to be and are being until the next time you need to take time out to ‘refresh your equilibrium’. Your daughter is beautiful,as are your other two kiddies and your love for them all,and you ‘will’ cope with whatever comes next but right now you need to nurture your own self and let the universe know exactly how you really feel about this nightmare youre living through. It helps,believe me. *hugs*
Lola, you rock! What a beautiful message of support. Xxx
Second that. Lola, great words. I love the car-howl as a stress release. You might be only able to get away for five minutes at a time V, so the car could be perfect. x
Thank you. Funnily enough your comment came through just after I’d finished stomping around outside in the rain (checking fruit trees for new growth, and being glad it’s spring) and getting nicely soggy.
xxxx
Aww … such a precious, precious little babe … thinking of you both right now and praying that Evelyn gets better soon, and you get the answers you’re after. Nothing sucks more than being stuck in hospital, all that waiting around would drive one crazy. Glad you’re both home, even if only for a short while.
Sending big hugs too XXX
I don’t have any suggestions, but I am just glad that you are at least home and able to turn the music on, and I hope hope hope that Evelyns tests come back asap and the phenobarb helps. Sendings as much love and strength as one can through the internet!
Fine
I don’t know what to say, apart from good luck and I hope the test results come back soon so things can move forward.
I really hope you get some answers soon and that little Evie is going to be ok! You just do whatever you need to get through this! Wishing you and your family all the best! Xx
I’m glad at least that some progress seems to be happening towards a clearer picture. My heart aches for how hard this is though. In terms of practical ideas. I find when I am losing my shit that switching my brain to another channel helps me to zone away from what’s happening. I don’t know if you are much of a podcast fan, but the Slate Culture Gabfest, and the Slate Double X Gabfest are my two current fave programs. Books, movies, cultural happs, from smart and funny thinkers. Both available on Itunes free. You can also download a greta free app called Stitcher that will update your favourites and play through your phone. Email me if you want more details. Sending love V, hang in there my friend. x
hi veronica,
i haven’t posted in a while, but follow you avidly, and have had my heart in my mouth reading your latest evie posts and hoping for good news.
i have NO experience with Tiny Person Seizures, or maybe-blindness…but my now-4-yr-old showed very few visual reflexes as a babe, would follow stimuli if and when it suited him (it seemed), would not fixate on objects etc etc etc…and was referred for early intervention and released from their programme after only a year: a COMPLETELY different child in terms of what he could and would do with eye contact & co (i say “would”, because he has since been diagnosed with asperger’s, so his choice to make eye contact is a different story lol).
i really just wanted to share my point of view, because while i don’t doubt for a second doubt that watching evelyn go through this and wondering what might be out the other end is equally heartbreaking and terrifying, i thought it might help (even just a tiny bit) to hear from someone who had been “there” (just the eye-stuff) that with training, (re-) learning how to focus and react etc is possible.
thinking of you lots,
xxlisa
Breakdown. Let’s break it down, fuck it all off, tear the place apart, set it all on fire.
I have been sending you so much love from where I am.
The hardest part to anything I am “going through” in particular times in my life … is the not knowing. It’s fucking torturous and cruel. I wish you answers, soon. And I wish you moments, snippets of joy and laughter. Being absurd always helps … life is meaningless and bullshit but we must get up to make cups of tea and watch our children play in the garden.
XXX eden
Sorry there are no answers yet. Be kind to yourself and it’s ok to break down x
Ohhhhhh that face! SO loveable sweet!
I hope the tests turn out well, but I hope they don’t miss anything BOTH at the same time. :/ That hospital smell is pure evil and I hope you can stay away for good after all this. I can imagine teetering on the edge of crazy after all this. When is spring getting there finally? You need stuff to change.
I’m so, so sorry Veronica. This sucks so badly it’s bruising. I don’t have any suggestions apart from the music. But I agree with Eden – break down if you have to. Somehow you have to get through it for Evie’s sake. I’m sure she won’t care if you go a bit bonkers – she’ll love you anyway.
I’ve been listening to a weird blend of Tears for Fears, Little Comets, Tom Petty, Lincoln Park, and AFP.
Theater is Evil is a nifty exercise in mind-f*$k as art. There are a couple of songs that I really love, and a couple that I haven’t parsed yet. AFP is one of those artists where I have to come to personal terms with the music song by song, it’s never a whole-album experience.
As for distractions, I’ve been reading Richard Kadrey’s “Sandman Slim” novels. I resisted them because the title was too close to my favorite set of stories by my favorite author, Neil Gaiman (who also happens to be – by total random coincidence – Amanda F’ing Palmer’s husband).
They’re good books, as bubble-gum-for-the-brain anyway. I wouldn’t call them deep, but I wouldn’t call them hard to get into either. In stressful times, I like some good brain bubblegum.
If there’s anything I can do from my side of the world, even if it’s just a shoulder to lean on or someone to yell at while the world falls down, please just let me know.
I just finished reading the latest Sandman Slim book in the hospital admission before this one. I agree, definitely good junk food books. I love Neil Gaimans novels too, sometimes I wish I hadn’t read them, just so that I could read them for the first time again.
(((HUGS))) and strength!!!!!!!! X
Glad you’re at home!!
Lots of hugs to you, Veronica.
And I say go ahead and break down for awhile. I promise you I am not being flippant – some things just have to happen, and emotional release is one of those things.
Be gentle with yourself, sweet girl.
I have been reading your blog for a long time but for some reason it had vanished from my list….I found you again…. And oh my! I have been sitting here breaking down myself!!! You and your beautiful family are in my thoughts and prayers!!!
Lola’s note made we realise that while geo close and that I have actually met you, her wise words and amazing clarity and analysis was far closer to what you really want to hear. What an inspiring set of words, as someone else has said.
Anyways still thinking of you and yours. And a huge hugful dollop of support.
And yes, even though I am an old fart – AFP just simply rocks, and the fact that she digs Tassie is even better.
xx G
Comments on this entry are closed.
{ 2 trackbacks }