Mummy Interrupted

Today I should be finishing up work for Christmas (well, sort of – I have lots of work-related reading to do by the beginning of January, but not too much). I should be excited about getting Sissyboo at 13.30 as she finishes school for the term. I should be looking forward to a Christmas together all four of us, hopefully without the dramas and hospitalisations that ruined the last one. I should be writing Good News Friday. 

Instead, I  am sat here waiting for a consultant to call me back, writing a blog post, crying my eyes out and with a dry mouth and shaking legs. I am having a 4th panic attack in 3 days and I am miserable and scared.

The cause? I don’t quite know for sure. I have been having a hard time all December as we approach the anniversary of the onset of Boo’s infantile spasms. This anniversary is proving at least as tough as his birthday and due date anniversary. In fact, it’s much worse as I remember that the spasms can come back or morph into another form of epilepsy that can undo all the work we’ve done on his cognitive and physical development. That can take me back to the brink of severe depression and acute anxiety that made life so difficult between January and May. I am always in a state of alert. Now, I’m in a state of hyper-vigilant panic. 

The fear is crippling. I can’t talk or think about anything else. I am a wreck. I had started to feel better a week or so ago and thought I was coming out the other side of this mental health blip. But then two nights ago Boo started uncontrollably screaming and writhing while we were trying to get him to fall asleep. 

Bedtimes are never happy occasions in this house. Boo has fought sleep and his contorted body that he can’t move as he’d like to since birth. But this is different. He is writhing and screaming for a good hour or so as we hold and comfort him. We can distract him by giving up or showing him a toy but the minute we try to settle him again, his legs start coming up abruptly into a frog-like position and back straight again and the high-pitched screaming returns. I don’t know if the legs are caused by the crying/distress or vice versa.

I live in fear the spasms have returned.

I should say that what Boo is doing at bedtime looks nothing like the spasms he experienced almost exactly a year ago. He had those only on waking. They were a rhythmic jerking movement from stomach to head. What I am talking about now only happens when he is falling asleep (although that is a common time for IS to occur) and he is pulling up him legs to his tummy (not a particularly common seizure presentation as I understand it). There is no stomach movement, no eye movement, no regular rhythm. He is not returning to normal between movements. He is just plain angry and incessantly moving. Am I being paranoid?

I think I am. He may just be teething. He has had two teeth coming through for weeks (you can feel the point of one under the gum.) He and teething get on about as well as he and sleep. No teething experience he’s had so far has been pleasant for any of us.

Then there’s the fact that I am in a state of high stress (not helped by the OT breaking Boo’s long-awaited Bee seat yesterday when she came to do a review – and the Jenx factory is now closed for weeks for Christmas, or the fact I feel I am very behind with my work and so many other things). I realise that I am probably making the ‘evidence’ fit the scenario my disordered mind has conjured.

I keep saying to myself that it is no more likely his seizures will return this Christmas as next March or never. It’s just a date. But I can’t shed the fear. Even though my instinct is that this is nothing serious. (That was not my instinct with the spasms – I knew what they were even when no one around me would believe me until they saw the EEG results.) 

Perhaps the consultant will call me back. Perhaps he will put my mind at rest. I have never wanted to be perceived as a bothersome, paranoid parent more in my life.

I want things to get back to normal. Our normal is not most people’s, though I know it is so much better than many others’, but it is ours and we can deal with it. 

And I so want everything to be OK. Two nights ago, Sissyboo was crying when she remembered that Mummy and Boo spent most of last Christmas in hospital. She begged us to promise it wouldn’t happen this year. We said we were as sure as we could be that it wouldn’t happen again. But we can’t promise anything, can we?

Please let this be a blip. Please let the seizures stay at bay. Please let this Christmas be a healthy and hospital-free one. We would all gladly send all our presents back if we knew this could be true.


5 thoughts on “Mummy Interrupted

  1. mylittledreamworld1

    I really feel for you, and understand why you feel this way. There’s a lot going on and it’s okay to say that you are struggling. Just do whatever you need to to get through, and never be afraid or ashamed to ask for support – that’s what the professionals get paid for xx

  2. AJJ

    I read your blog avidly I too have a baby (28 weeks/20 weeks corrected) who is developing severe CP, your blog is my helpline, through your words and actions I’m understanding more, you’ve helped me in this last week more then any professional has in the last 6 months of my ‘Boo’s’ life.
    I’m sorry to hear your so upset today, I’m sorry your sat in a car alone crying, you’ve helped me this last week without realising so I now want to help you by sending you some comfort/hugs/love – I wait for your updates all the time, I’m sad to read today’s as you’ve been my ‘rock’ since I started reading your blog.
    Please let us know how today goes, thinking of you xxx

    1. mrboosmum Post author

      This has to be one of the loveliest blog comments I have ever received. Thank you so much.

      It’s not the CP that’s got me down, although I’d be lying if I said it didn’t, from time to time. No, it’s the epilepsy. The kind Boo developed last Christmas is an especially devastating kind. He has been seizure free for 11 months. I just fear a recurrence and the anniversary has made me scared, especially as he’s behaving oddly at the moment.

      I hope your Boo is doing well and that you are coming to terms with things. It will take time. I remember the early months and the fear and worry very well. I won’t pretend it’s ever easy, but I promise you that it gets easier. Boo has severe brain damage, but he is exceeding everyone’s expectations. I don’t know if he will ever walk, but he is learning to sit unaided and loves his standing frame. His arms can be very stiff but he does use them all the time and can open his hands and play. He is the happiest and funniest child. He understands everything we say and has a few words and attends a mainstream nursery. Please keep in touch.

      1. AJJ

        Wow! You replied thank you so much! I hope your feeling better and as the day went on you felt stronger. I’m thrilled you commented – I can understand that fear, it’s the anticipation, the fear, you’ve ‘been here before’ and yes this time of year will bring it all back as though it was yesterday. I can see that and I sincerely hope you get through this period and come through the other side. My boo too suffered severe brain damage, expectations are low but since I found your blog I’m a new person, I have found the hope again, the hope I initially had, which got eaten away over the last 6 months. My darling boo suffers spasms – they were so bad and everyone told me they were ‘reflux’ – finally after research I realised they were spasms and was able to make sure he was put on medication. They’re still coming, it’s awful but his medication has to be increased bit by bit so we have to watch him suffer – its killing us. I know it’s not appropriate as youve had a poo day so please forgive me for sharing, but after reading/ absorbing your blog, my favourite bits are good newsFriday – well today I had my good news – my boo smiled, he smiled, gurgled, smiled some more and thoroughly enjoyed his bath – I must have caught him at the optimum moment his medication and comfort were aligned – my grumposaurus and I were beyond over joyed – we’ve never seen our boo happy – it was the most amazing sight ever! I’m still on a high though I’m scared I imagined it but we didn’t – he smiled!
        Anyway I’m hijacking your comments section – thanks for replying, I’m really hoping the day got easier for you all. I’m a random mum out here, floundering with this new world we’ve entered and I found your blog and for that I’m so thankful. I wish I had found it earlier! I’ve found hope again, your beautiful Boo amazes me and he’s everything I want my Boo to be – he’s our yardstick! My goal is to see my Boo in a little Tykes swing – the most loveliest photo I’ve ever come across! Right I’m shutting up now…… X

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