Feeling a bit fed up

19 Aug

I feel very housebound and fed up at the moment. We had been having a dream run with Tilda and her vomiting but unfortunately it has returned. And did so moments before we were due to leave the house for a wedding. Needless to say, we ditched our fancy garb and stayed home. After a bath and a sleep, she is looking a bit better.

I am so sick of this bloody disease. I am sick of watching my daughter in pain. I am sick of not knowing how to help her. I am sick of watching her slip further and further away from my sparkly Tilda. I hate every facet of it.

Three children in the Batten community died this past week. Morgan, from the UK, was just 5 years old and only diagnosed with late infantile Batten last August. Jordy-Rose from New Zealand had the juvenile form and was 20 years old and Lillian from NSW, who passed away yesterday morning was 7 years old and had the late infantile form.
They suffered and their families suffered and the fact that the only comfort to be has is that they are no longer suffering is completely shitty and hardly a comfort at all. My thoughts and love are with their families.

In Tilda updates, along with the vomiting, we have a new symptom that is plaguing her. She has been having issues with her legs over the last week or so. At night, they seem to be really bothering her, waking her throughout the night. We aren’t sure whether it is muscle cramps or dystonia or some kind of seizure activity. I was able to see our paediatrician on Thursday who prescribed a new medication, Baclofen. Hopefully, this will start to help soon.

She did have a better nights sleep on Wednesday after a wonderful swim with her dad at school.

This is what keeps me smiling.


19 Responses to “Feeling a bit fed up”

  1. Fiona August 19, 2012 at 9:32 pm #

    I am sending all my good thoughts and love your way honey. Always. xoxox

  2. Stella F August 19, 2012 at 9:36 pm #

    Gorgeous photo. Thinking of you, as always x

  3. Pete August 19, 2012 at 10:36 pm #

    How good is that smile?! ‘Just keep swimming…’ (okay, plagiarising Finding Nemo, but I reckon it’s relevant in broader life…)

    • JessB (Kate's friend) August 20, 2012 at 7:34 pm #

      That line is what I thought of too! Batten’s is such a no-good, terrible, completely bloody horrible disease, and I think it takes all of Dory’s positivity to help lovely Tilda’s family combat it. Go you Laura and Simon, and Tilda.

      “Just keep swimming, just keep swimming, swimming, swimming, swimming, just keep swimming…”

  4. Min Wah August 20, 2012 at 12:02 am #

    Wishing you amazing souls much love and strength! LOVE the clip – very very cute and special.

  5. cally berryman August 20, 2012 at 5:52 am #

    It must be so hard for you all. It seems for every forward moment and relief, it is two steps back. It is no wonder you are worn out and burntout.
    The deaths of the others in the Batten community must have been horrible.
    The swimming photo of Simon and Tilda is priceless.
    The love is so evdient.
    Hang in there, we are all with you in spirit.
    Your difficult journey is very evident.
    Love, warm hugs Cally

  6. Danielle x August 20, 2012 at 7:02 am #

    You beautiful, beautiful people. Oh what I would give to take this all away ;(

  7. Jo August 20, 2012 at 7:56 am #

    I am so sorry Laura. I am hope things pick up swiftly. Massive hugs xx

  8. Juliet August 20, 2012 at 9:00 am #

    I am so sorry for all of you. All my love, and fingers crossed for the new medication.

    • Irene Davey August 20, 2012 at 9:17 am #

      as already said, big HUGS for you all xxOOOOOO

  9. Naomi August 20, 2012 at 9:32 am #

    sooo gorgeous … oh the lengths you would go to to elicit that kind of response xx

  10. Daryl August 20, 2012 at 10:49 am #

    So tough for you both Laura. And very okay for you to feel ‘fed up’ and sick of this insidious disease . Like everyone else I wish we could take your ‘pain’ away. While I know it doesn’t help, I say again you are amazing parents and in that respect Tilda is truly blessed . Wishing you better days ahead and thinking of you always.

  11. Diane August 20, 2012 at 4:56 pm #

    Dearest Laura and Simon. Always sad to read when you are distressed. For any of us, I know we feel your heartache, but always marvel at how you manage to bounce back and make the best of it. As always, my thoughts and love. Di

  12. treen August 20, 2012 at 6:38 pm #

    To quote you Laura – F U Battens… Not very constructive for you but it feels pretty good. Lots of love to you. Treen xx

  13. Anne Bunting August 20, 2012 at 9:56 pm #

    You poor darlings – we all feel so helpless when you are down and there is nothing we can say or do to make the pain go away. Hopefully the new medication will help and life will be a bit sunnier again Love always Anne

  14. Ken and Wendy Brown August 20, 2012 at 11:24 pm #

    Hi Laura,
    We feel your frustration and distress and we send you our love and support.
    We hope Tilda receives some relief from her new symptoms.
    Take care of yourself.
    x Ken and Wendy

  15. Benita crocker August 21, 2012 at 8:47 am #

    Hi Lovely lady,
    Have absolutely nothing worthy to say except I think of you and Tilda so often (as I’m sure everyone out there does as well). We are all still here and quite happy to hear you vent as often and much as you need to! love be xoxoxo

  16. Audrey Waghorne August 21, 2012 at 3:22 pm #

    Love the pic! my thoughts and love are with all three of you!
    I hope that Tilda has improved a tad by now and that you may be a little happier and relieved! xoxoxo

  17. Suzanne August 25, 2012 at 12:08 am #

    Sending love, laughter and hugs from us to you all. With all my heart I wish I could be of more help in any little way that I can. (please shout if you think of something). Love always x

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