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…

48 Comments (+add yours?)

  1. Ali
    Nov 07, 2011 @ 15:06:07

    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


  2. eviegracesmummy
    Nov 07, 2011 @ 15:08:48

    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


  3. Helloitsgemma
    Nov 07, 2011 @ 15:24:30

    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


  4. scannermum
    Nov 07, 2011 @ 15:26:25

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


  5. Liz Fielding (@lizfielding)
    Nov 07, 2011 @ 15:28:56

    Oh, Jane. Tearing up here. Lovely post.


  6. Sukh Pabial
    Nov 07, 2011 @ 15:30:15

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


  7. The Mad House
    Nov 07, 2011 @ 16:02:44

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


  8. Muddling Along
    Nov 07, 2011 @ 17:14:00

    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


  9. Pooky @poorparenting
    Nov 07, 2011 @ 17:23:57

    You need to rename her BBB – Brave Beautiful Baby 🙂


  10. mothersalwaysright
    Nov 07, 2011 @ 17:29:22

    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


  11. Helen
    Nov 07, 2011 @ 18:32:18

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


  12. headinbook
    Nov 07, 2011 @ 19:22:16

    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.


  13. ben rainbow
    Nov 07, 2011 @ 19:22:17

    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….


  14. Mummy Matters
    Nov 07, 2011 @ 20:00:46

    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


  15. jazzygal
    Nov 07, 2011 @ 21:24:11

    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


  16. Emily O
    Nov 07, 2011 @ 22:47:38

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


  17. Notmyyearoff
    Nov 08, 2011 @ 11:55:45

    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 🙂


  18. He Who Helped Create Them
    Nov 08, 2011 @ 12:25:17

    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!


  19. maggy,red ted art
    Nov 08, 2011 @ 18:17:41

    I have goosebumps and tears. You write beautifully.

    Good luck with finding the right medication!

    Maggy x


  20. Emma @mummymummymum
    Nov 08, 2011 @ 18:22:42

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


  21. Lynsey
    Nov 08, 2011 @ 19:49:32

    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


    • janeblackmore
      Nov 08, 2011 @ 20:18:32

      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!



  22. Alyson
    Nov 08, 2011 @ 20:08:03

    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


    • janeblackmore
      Nov 08, 2011 @ 20:19:48

      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.


  23. Blue Sky
    Nov 08, 2011 @ 21:40:28

    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


  24. sarsm
    Nov 12, 2011 @ 14:05:35

    I hope it works too. x


  25. Trackback: Its time…….. « Northern Mummy with Southern Children

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