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Northern Mum

Crossfitting, pancreas acting, single mum to three

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Epilepsy: BB’s Secret World….

Her eyes became fixed, her face relaxed and somewhere inside her small, perfectly formed little head her mind wandered off casually for a moment or two. Taking BB to her secret place that only her and her epilepsy know about. A smile broke out upon my face, for the first time knowing my daughter was having an epileptic absence made me happy.

Absences for epileptics are short seizures where no actual visual “fitting” occurs but they become unresponsive to touch and sound and literally retreat into their own little world.

I imagine BB’s secret world to be filled with lakes full of breast milk and a moon made from chocolate buttons. Where walking is outlawed and all residents move around on their bottom, shuffling from one place to the next. The sun is always shining and tame tigers roam the land stopping for a cuddle at a toddlers request. This is where I hope my daughter goes when she leaves me for those few seconds everyday.

Normally I don’t express rapture when BB goes to her secret world, but today BB has a series of electrodes glued onto her scalp. During the gluing process my incredibly brave seventeen month old daughter giggled and played whilst chomping down on chocolate; I don’t think I could have remained as calm should someone choose to glue numerous things to my hair. Each red, yellow, green and blue wire will record each idea, dream, thought and seizure she has over the next 48 hours; and we caught an absence almost as soon as we left the hospital.

If the EEG has recorded it, it will help to ensure that BB takes the right medication daily and hopefully will help us lock the gate to BB’s secret world so she stays with us, in our world, all the time.

I am sure she will miss the tame tiger but I can promise her all the milk, chocolate buttons and bottom shuffling she can take in the real world.

Let’s hope it works…

Comments

  1. Ali says

    November 7, 2011 at 3:06 pm

    Lovely post as always x There is some amazing medication out there to help BB so I can see why today it made you smile.

    The glue I have heard is a bit trickier though but a bit of glue well…

    Take care xxx

    Reply
    • janeblackmore says

      November 7, 2011 at 10:01 pm

      the glue needs to be removed with blooming nail polish remover…

      Reply
  2. eviegracesmummy says

    November 7, 2011 at 3:08 pm

    Jane what a beautiful way to think about epilepsy. Your writing once again has brought me to tears. Thank you for taking us with you every step of BB’s journey. I hope and pray that you get the results and answers you need. Huge cwtch and kiss to BB and to her brave Mummy xxxxx

    Reply
    • janeblackmore says

      November 7, 2011 at 10:00 pm

      Awwwwww thanks poppet. xxx

      Reply
  3. Helloitsgemma says

    November 7, 2011 at 3:24 pm

    Hey mrs, apart from lake of breast milk – do like the sound of it. Hope next 48 hours goes ok. Love to both of you. Xxx

    Reply
    • janeblackmore says

      November 7, 2011 at 10:23 pm

      whats wrong with my breast milk???

      Reply
  4. scannermum says

    November 7, 2011 at 3:26 pm

    Beautiful, and I’ve had a little cry. What an amazing girl you have. I wish you all the very best, xx

    Reply
    • janeblackmore says

      November 7, 2011 at 9:59 pm

      Thanks very much

      Reply
  5. Liz Fielding (@lizfielding) says

    November 7, 2011 at 3:28 pm

    Oh, Jane. Tearing up here. Lovely post.

    Reply
    • janeblackmore says

      November 7, 2011 at 9:59 pm

      Cheers Liz

      Reply
  6. Sukh Pabial says

    November 7, 2011 at 3:30 pm

    Sincerely hope this works out as they intend. Good luck and go BB!

    Reply
    • janeblackmore says

      November 7, 2011 at 9:59 pm

      Thanks sukh x

      Reply
  7. The Mad House says

    November 7, 2011 at 4:02 pm

    I will be keeping my fingers crossed for you. I remember those posts from the hospital not knowing what was wrong with BB.

    Reply
    • janeblackmore says

      November 7, 2011 at 9:59 pm

      It seems like so long ago now, god I was terrified then and now this almost seems routine

      Reply
  8. Muddling Along says

    November 7, 2011 at 5:14 pm

    Keeping fingers crossed that the tests come back wtih lots of right answers

    Am now off to daydream what my girls’ secret worlds might be like – yours sounds wonderful

    Reply
    • janeblackmore says

      November 7, 2011 at 9:58 pm

      Thanks lovely x

      Reply
  9. Pooky @poorparenting says

    November 7, 2011 at 5:23 pm

    You need to rename her BBB – Brave Beautiful Baby 🙂

    Reply
    • janeblackmore says

      November 7, 2011 at 9:58 pm

      good plan, hows you we have not spoken for yonks

      Reply
  10. mothersalwaysright says

    November 7, 2011 at 5:29 pm

    Love to BB – and can you ask her to bring some chocolate buttons back for me? I’m rather partial to a chocolate button or ten. xx

    Reply
    • janeblackmore says

      November 7, 2011 at 9:57 pm

      We have buckets here – have some on the weekend x x x

      Reply
  11. Helen says

    November 7, 2011 at 6:32 pm

    ah bless BB.
    I hope it all goes well & you get her medication sorted out
    x

    Reply
    • janeblackmore says

      November 7, 2011 at 9:57 pm

      Thanks Helen

      Reply
  12. headinbook says

    November 7, 2011 at 7:22 pm

    What a beautiful and moving post. I hope that this does yield the answers you’re looking for to allow BB finally to leave behind her secret world.

    Reply
    • janeblackmore says

      November 7, 2011 at 9:57 pm

      She will miss the buttons…..

      Reply
  13. ben rainbow says

    November 7, 2011 at 7:22 pm

    Really hope all works out well with everything on that front…. Can remember a similar thing with Joe (not mine) & his ADHD & autism.
    All the best….

    Reply
    • janeblackmore says

      November 7, 2011 at 9:57 pm

      Cheers Ben x

      Reply
  14. Mummy Matters says

    November 7, 2011 at 8:00 pm

    I absolutely love your writing, a really beautiful post about a scary subject. I hope that the tests give the docs all the answers they need to help BB x

    Reply
    • janeblackmore says

      November 7, 2011 at 9:56 pm

      Me too, thanks for the comment about my writing it means a lot x

      Reply
  15. jazzygal says

    November 7, 2011 at 9:24 pm

    Beautifully put. I do hope you get some answers and appropriate medication to help your cheerful little Angel! What a dote she is 🙂

    xx Jazzy

    Reply
    • janeblackmore says

      November 7, 2011 at 9:56 pm

      Thank you very much

      Reply
  16. Emily O says

    November 7, 2011 at 10:47 pm

    I’d find that very hard. Fingers crossed for you all x

    Reply
    • janeblackmore says

      November 8, 2011 at 6:43 am

      Thanks poppet

      Reply
  17. Notmyyearoff says

    November 8, 2011 at 11:55 am

    Hope it went well for BB. My friend has epilepsy and the absence thing is something I can see in him. For about a minute his eyes glaze over and you know. Then he’s back again! I love the lakes of milk and chocalate buttons too 🙂

    Reply
    • janeblackmore says

      November 8, 2011 at 5:57 pm

      Thanks mrs

      Reply
  18. He Who Helped Create Them says

    November 8, 2011 at 12:25 pm

    Update; BB is doing very well and being a real star. With her pack-pack on, and hair net in, she looks as though she is about to go skydiving! Fingers crossed that this time tomorrow she will be on the way home, wire and glue free!

    Reply
  19. maggy,red ted art says

    November 8, 2011 at 6:17 pm

    I have goosebumps and tears. You write beautifully.

    Good luck with finding the right medication!

    Maggy x

    Reply
    • janeblackmore says

      November 8, 2011 at 8:20 pm

      Thanks Maggie!!!! xxxx

      Reply
  20. Emma @mummymummymum says

    November 8, 2011 at 6:22 pm

    How did it go? Sounds like she was very brave. Big hugs to you both. xx

    Reply
    • janeblackmore says

      November 8, 2011 at 6:29 pm

      Still on going but she is doing fab

      Reply
  21. Lynsey says

    November 8, 2011 at 7:49 pm

    Another beautiful post. I can’t imagine how u feel as a mother trying everything to help your daughter; your positive outlook (including lakes of breast milk and chocolate buttons) has given BB the best start in life. She is blessed and lucky to have a mummy like you. Can I ask, are you breastfeeding still? My 3 month old loves it and I plan to go as long as I can, past 12 months hopefully. Were you supported feeding beyond 12 months? (hope you don’t mind me asking, feel free to DM me) x

    Reply
    • janeblackmore says

      November 8, 2011 at 8:18 pm

      Yes I am still feeding, BB is 17 months and has a morning and night feed, a few people have commented that it is unusual to still be feeding but most of them know I blog about it so tend to keep stum!!!!

      No idea when I will stop, if honest didnt expect to be feeding now but it works for us!

      x

      Reply
  22. Alyson says

    November 8, 2011 at 8:08 pm

    Thiis was such a beutifully written and compassionate post I couldn’t not comment. Lucy, my now 7 year old had absence epilepsy, but I didn’t have your calm or grace, but I descended into panic and fear and worry. It eventually disappeared of it’s own volition but Lucy has always been and remains different, super smart, funny, intelligent, kooky and utterly utterly unique. Well done for being such an amazing mummy to have picked up on this so soon and got the help she needed x

    Reply
    • janeblackmore says

      November 8, 2011 at 8:19 pm

      Thanks lovely, glad to see they disappeared, BB also has full blown convulsions but they are coming under control, slowly but surely… fingers crossed these last tests will sort it out.

      Reply
  23. Blue Sky says

    November 8, 2011 at 9:40 pm

    I’m glad for you that BB seems happy when she is in her own little world, and let’s hope that she is even happier when she can be in yours all the time xx

    Reply
    • janeblackmore says

      November 8, 2011 at 9:52 pm

      Thank you x

      Reply
  24. sarsm says

    November 12, 2011 at 2:05 pm

    I hope it works too. x

    Reply
    • janeblackmore says

      November 12, 2011 at 8:34 pm

      Thanks- me too

      Reply

Trackbacks

  1. Its time…….. « Northern Mummy with Southern Children says:
    November 16, 2011 at 2:52 pm

    […] finally BB, she is a baby bridesmaid.  She has a headful of glue following on from lasts weeks EEG and is currently going through a “demanding” stage.  If she isn’t attached to […]

    Reply
  2. No more DDH: why walking can wait - Northern Mum says:
    May 27, 2012 at 8:42 pm

    […] last two years have been incredible and heart wrenching, your epilepsy was hard and hip dysplasia more challenging. We have spent more nights on those hot stuffy wards […]

    Reply
  3. Putting things in perspective - four days later #diabetes - Northern Mum says:
    November 3, 2012 at 10:04 pm

    […] in perspective.  And as BB forced me to realise the strength of a baby in her battle against epilepsy and later Hip Dysplasia, twin girl; my beautiful Molly has shown me the determination and courage […]

    Reply

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