The depths of uncertainty

by Veronica on January 29, 2013

in Evelyn

Some days I wake up and I’m sure everything is going to be terrible. Plagues of locusts; hordes of zombies; houses imploding – that kind of terrible. Those mornings are the easiest in a way, because when everything fails to go wrong then I can be pleasantly surprised. I’ll look around and realise that I’ve drunk an entire cup of tea before it went cold and my toast is still warm; that the garden is still intact and everyone under my watch is still alive and realise that maybe it’s all going to be okay.

Other days, I’m wrapped in the warm cotton wool of certainty. Everything is going to be fine. Of course it is. Nothing worse than spilled milk and cereal on the floor is going to happen and we’ll all make it to bedtime happy and healthy.

And then there are the days that crack like eggshells, going from everything is going to be fine to holy fuck, nothing is ever going to be the same again.

I’m talking about Evelyn of course. I’m always talking about Evelyn lately. All I ever fucking talk about is this baby and whether her issues will resolve and what those issues are and how we can help.

I get smacked in the face sometimes by her issues, because it’s easy to forget, wrapped in this warm cotton wool, that everything is not okay and that our future is not certain. It’s easy to forget that she is six months old [oh god oh god, she’s six months old and look at her, will someone just fucking LOOK AT HER and tell me with their magic crystal ball what our fucking future is like please] and that she is not progressing as normally as we’d all like.

Sure, she’s not missing everything yet, but she’s not rolling over anymore and so that milestone doesn’t count because it’s not something she added to her repertoire. She’s not babbling. She’s not using both her hands effectively. She’s barely using her right hand at all. She only manages to put things in her mouth 30% of the time. Her right leg kicks repeatedly. She has very little control over her body.

And yes, I know that the optimists in the audience will point out that at least she is doing some things, some of the time. Trust me, I know how to count my blessings here. I also watch her and worry and it’s a hard worry to push down, because I mention small things she’s doing to her Paediatrician [her tongue trembles sometimes, and not in a feeding flutter, but a tremor] and he looks worried, but also pleased that it doesn’t happen all of the time, but still, he was worried and her tongue still trembles and I think it’s getting worse, but who knows? I spend so much time just WATCHING this baby that I don’t even know what is important anymore. Her desire to be a starfish [jerk all limbs outwards, arch back and screech because that is NOT what you wanted your body to do] or her twitching while she’s asleep [non-epileptic paroxysmal episodes, that look like complex partial seizures] or her jerky movements or or or or….

It’s just, enough already. I need a crystal ball and to stop being smacked in the face by the possibility that none of this will be okay.

I mean sure, it might all be perfect in six months, but you’ve got to give my brain props for showing me that it might just get a whole lot worse.

Thanks brain. I couldn’t do this without you.


Ankia January 29, 2013 at 6:26 pm

I never know what to say to you, except that I think you are awesome for coping with all of this and to keep the faith! (((Hugs)))

Pixie January 29, 2013 at 6:36 pm

Ohhh look at those adorable cheeks!

Hang in there hon.

Much love

Cait Nicholas January 29, 2013 at 7:59 pm

You are amazing 🙂 And yes, I agree with Pixie, you have adorable cheeks, and so does that babe of yours 😉

Cait xxx

Anne January 29, 2013 at 9:40 pm

Firstly, loving the pic of you and Miss Evelyn. Gorgeous, just gorgeous. 🙂

You have been through so much the past year or so, and I think you’ve coped amazingly well so far ((hugs))

Anne January 29, 2013 at 10:48 pm

Love that picture, you both look beautiful 🙂 Sending hugs…

Mrs Woog January 29, 2013 at 11:23 pm

That photo…… That is love x

Toni January 30, 2013 at 10:44 am

Uncertainty is a killer, the not-knowing invites you to come up with all kinds of scenarios and keeps your head stuck in places you just don’t want to go.
With all my heart, I hope you get the answers you need, and SOON. For your sake as much as Evelyns’.

Dorothy @ Singular Insanity January 30, 2013 at 11:33 am

I can’t even imagine how hard the last six months have been for you. I think you’ve done an amazing job and keep doing it despite everything that life has and continues to throw at you.

You are amazing!

frogpondsrock January 30, 2013 at 8:39 pm

lol you look slightly deranged in that photo lovely, like you are about to impersonate the rabbit from the cave.

frogpondsrock January 30, 2013 at 8:40 pm


Veronica January 30, 2013 at 9:04 pm

I read that as changeling. I think I need more sleep.

frogpondsrock January 30, 2013 at 9:07 pm

and more Monty Python? maybe start channnelllinggg Harold?

Veronica January 30, 2013 at 9:11 pm

At least I know I won’t break anything if I throw myself out of one of my trees while learning to fly.

frogpondsrock January 30, 2013 at 9:13 pm

Glad to see you still have ambition

Veronica January 30, 2013 at 9:19 pm

I can just picture myself crouching on top of my (very small) gumtree, pretending to be a bird. Or a sheep. Either/either.

Kim @ Frog Ponds Rock January 31, 2013 at 8:48 am

You need a Disclaimer if you are going to crouch in trees. *No trees where harmed whilst being crouched upon* or similar. I will leave you to work out the finer details;

frogpondsrock January 30, 2013 at 8:43 pm

or is it channelling? they both look wrong. but the one in all caps looks wronger. wrongest, the most wrong, more wrong, wrong

Kate January 30, 2013 at 8:45 pm

I’m so sorry you’re going through all this anxiety. It sounds so hard, and I think about your situation often and just hope and pray that Evelyn gets better.

Louisa January 30, 2013 at 9:07 pm

I second Ankia and Cait… so much love xx

Sharon @ Funken Wagnel January 30, 2013 at 9:09 pm

It does sound very stressful:( Veronica, have you been given advice about how to handle Ev with solids? I mean, do the tongue tremors affect that at all?

Veronica January 30, 2013 at 9:12 pm

We basically got told to wait and see. She’s mostly happy on breastmilk at the moment, but I see the clinic nurse at the end of Feb and I’ll bring it up then again. I’m sure our Paed and Physio will have a plan if she’s not able to easily eat solid food by 8 months or so. Until then, you may call me Milk Lady.

Sharon @ Funken Wagnel January 31, 2013 at 9:31 am

Oh, that’s good then:) There are far worse things to be called than Milk Lady:P

Lola February 1, 2013 at 3:49 am

I came across a short blog today that I dont know if you already know about but reading through it made me think of you and Evelyn. Its written by the mother of a 3yr old girl with Classic EDS,a seizure disorder and eye drift problems and this familys life has been far from easy so far but this recent post I’m linking to includes the words ‘She’s getting better’.

Its not a crystal ball because this child is not Evie and its not the ‘it’ll all be better next tuesday’ future that you all deserve,but its a ‘possible’ light-at-the-end-of-the-tunnel future to point out to your brain when it starts understandably panicking about whether your youngest will ever be ‘ok’. And the mother might be someone useful for you to pick the brains of for things that have helped her daughter?

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