My grandmother is dead.
Pffft, I hear you say. You know this already, and sing a different tune already. She’s been dead for over three years now in fact, surely I ought to have gotten over it?
But no. My grandmother is dead and I want to rail at the Universe, because she should be here. She should be here, because selfishly, I need her help with my smallest daughter and instead, she is dead. Every time I update my parents and Nathan’s parents after an appointment for Evelyn, I miss her. Every time I have to venture back into the hospital, I think of her. Every time the days seem long and shitty, I want to be able to phone her and shout about the fact that my baby is still sleeping, still seizing and nothing is getting better.
Instead, she is dead and I am trying very hard not to kick the universe for this fact.
About a month after she died, I lay in bed having what felt like a panic attack. I was done. I was so ready to be done with grief, to be done with the crapshoot of missing someone that badly, I was just done. I wanted my do-over. Door #2 please, I’ll take that one instead. No, cancer, you can get fucked, we’re picking a different path this time. Someone go back and pick me a new ending.
The thought of having to miss her every single day for forever was just too much – the finality of it all was just shit, as the future stretched out in front of me – a future that was never going to have her in it, no matter what I went on and did with my life.
It feels a bit like that with Evie now. I am ready to be done with the seizures now please. Ready to have my daughter magically fixed, by karma or whatever. Ready to wake up from this nightmare and have Evie’s eyes work perfectly and to be living the life I was obviously meant to have, before someone got confused and pressed the wrong button.
The future of this is all stretched out in front of me and I don’t want to think about having to cope for another day with a baby who cannot see, and who has seizures and who is confusing the doctors at an alarming rate.
But this isn’t a nightmare. This is my reality. The reality is that the baby seizes a lot. That yesterday and today she wasn’t even able to see high contrast toys, let alone our faces. That sitting on the couch with her, her eyes rolled around and flicked everywhere as she listened to my voice and she smiled when I kissed her cheeks – but didn’t, couldn’t, see me. That she sleeps all the time, spending only a tiny amount of time awake before needing to be put back to sleep.
It feels like someone ought to come out shouting that I’ve been on candid camera, and that this is all a giant cosmic joke.
Instead, the baby is asleep again (still) and my grandmother continues to be dead. Yay, reality.
There are no words xxx look after yourself and Evie x
Oh Veronica. I don’t really know what to say. I hope it all improves soon.
Reality sucks. If I find a magical time turner thingummy it will be sent to you.
Hughugshugshugshugshugs
When you find the magic do over door let me know.s
I am not going to try to make you feel better, because the whole thing is is a shit sandwich for you right now. Thinking of you every day xxxx
Oh how I too wish that I could wake up and be told that all that has happened over the last 7 years has been one bad dream.
Hearing you loud & clear.
Hope you get to talk to the paediatrician soon and that things start to head in a more positive direction.
Take care X
Reality sure does suck sometimes.
Missing someone you love and want to share your day to day life with and lean on a little and carry the load really does suck. Cancer sure sucks I know that.
I hope Evie turns a corner and you get some answers/direction/reprieve soon.
My little girl (now 7) was on antiseizure meds for first part of her life and she was super sleepy (had to be woken for feeds etc) – is this why E is sleepy?
If only the meds stopped her seizing??? Are they changing it up either different type or different dose or something?? Has it lessened them at all?
I COULD NOT WAIT to wean my little one off those meds – just trying to get them into her all day and night was hard.
Thinking of you and hoping for some sunshine in your cloudy days
I think the meds are probably contributing to her sleepiness, but she was really sleepy before they started her on meds too. I expect our next Paed appointment (this week) will see a change in medication, because phenobarbital isn’t working at all.
My darling Dad died from lung cancer when I was pregnant with my son. We found out he had cancer 4 days before I found out I was pregnant with my first baby and he was gone within 4 months. Cancer is number 1 on my bastard list.
When things have been really hard with my baby daughter, I imagine my Dad’s gentle voice reassuring me. It’s helped but also makes me sad. Bastard cancer.
I’m sure you’ve researched this already and I don’t want to confuse or upset you further (perhaps also your girl is way to young for this given you’re breastfeeding exclusively) but I know a couple of parents who have had some success decreasing seizure activity when drugs didnt work by following a ketogenic diet. The uk site with info is ‘Matthew’s Friends.’
My Gram has been gone for 23 years now, and is still sorely missed. Totally get where you’re coming from, when a special person in our lives just isn’t there when we need them.
Wish I could flick a magic wand to stop those seizures you don’t want.
If only life could be more like those “choose your own ending” books my kids used to read, or perhaps if there was an optional rewind/startover switch.
I’m terribly missing a close friend of mine too. She passed away 10 years ago because of cancer, and time just makes me miss her more (who says time heals everything?)
There are times when I imagine putting all of my will into turning back time, and then I realize that no matter what I do, it wouldn’t happen. Yes, it sucks and the bad thing is you can’t do anything about it.
I pray that things will work out for you and your family. Kisses to Evie! xoxoxoxo
I’m all the way over here in Dallas,Texas in the good ol’ US of A but in my heart I’m right there beside you waving my fists at the heavens screaming, shouting & cursing like a sailor. When we wear ourselves out I’d make us a cup of tea or pour us a glass of wine & tell you that your grandmother is there in spirit if not in the flesh. She cries each tear with you and her heart breaks with yours and wells with love along with yours when you look at and hold your little Evie. If I lived closer to you, I’d volunteer to be a surrogate grandmother/babysitter for you. Hang in there little mama!
May your beloved grandmother rest in peace.
Vent, scream, swear, go for it. I’m here, with all the other people that are here for you, listening.
Sending more warm hugs and prayers for you and Evelyn. xo
So hear you darling…..
((Hugz))
I cannot think of one right thing to say, as always. What fucking use are words when I can never find them when I need them? So, just to say I am here, wishing and hoping for you and railing at the universe with you.
xox
Oh Veronica, tears are shared, big big hug and I am praying and hoping to God that things get better for you and your precious family especially Evie. Thinking of you. Love Jess xx
I totally know and understand where you are coming from. (you can see my pervious blog posts re almost the same thing) my grandmother was my mother, by bff, my watcher, my guide my everything. I have kids with issues (no where near what you are going through my dear) and I always say it would be so much easier if she was here, at least for the extra support. Hugs and prayers with you and your family and your precious little baby.
I don’t really know what to say, but I didn’t want to leave without saying anything.
Oh darling. The universe can go fuck itself right now.
I’ve been feeling sorry for myself today. Max is 5, and I can’t help but think of the 5 year old boy I thought I’d have when I held him in my arms for the first time. One who could talk, who’d be toilet trained, in P1 and waking me up at stupid o’clock because he’s so excited to open his presents rather than because he’s 5 years old, non verbal, still in nappies and still not sleeping through the night.
Then I read this and it puts everything in perspective.
But yes.
Fuck the universe.
It’s just not fair.
Sending you lots of love xxxx
I understand still missing your grandmother. My (other) grandmother died when I was six. I still miss her fiercely.
I’m hoping this is all candid camera too. Stuff like this shouldn’t happen, particularly not to babies.
x
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