She’s here but not here

15 Nov

We had a fairly dramatic night last week. For some reason,  Saturday night seems to be Tilda’s night to have vomiting, coughing and trouble breathing episodes. This time, I called an ambulance, which resulted in about 4 firemen and 6 paramedics descending on the house and into her room. It was quite overwhelming. Apparently, the fireies are all trained as first responders. I have nothing but praise for all of them. Quick to arrive, kind, efficient and supportive. Tilda and I travelled by ambulance to the Children’s hospital where Simon met us. They did a chest X-ray and it confirmed that her lungs were a bit patchy, not completely awful though.  We had the option to stay in and have a course of IV antibiotics or go home and continue on the antibiotics we had, at a higher dose.

We chose to go home and so far, Tilda’s condition looks to be improving.   We had a follow up appointment yesterday and our paediatrician was pleased with how she looked and thought her chest sounded pretty clear. In very good news, we did a weigh-in and Tilda has finally cracked the 20kg mark! She’s back on the charts!

It is hard to know what is chest infection, what is antibiotics and what is general Batten Disease shittiness but Tilda has once again gone a bit quiet and withdrawn. Oh, I hate it. I hate it because it takes me to that dark, dark place and I ache with every fibre of my being to have my cheery Tilda back. If I had to describe  Tilda to someone who had never met her, I would say that she was a child full of joy. Even after the epilepsy hit, even when she struggled to walk and talk, she always managed to smile.

And this video, to me, sums up her joyfulness. 

Even after Batten struck, she was still the most joyful of children. 

And now, so much of that has gone. And I can bang on and on about looking at the positives and how great it is that she can still hear and feel the sun on her face but some days, that isn’t enough. I miss her already so, so much. People don’t talk about it much but there is such a thing as grief before death. A blogger I started following has a great guest post which talks about this ‘living loss’. In it, a daughter grieves for a father who is still living but not as the man she knew.

And another reference talks about ‘ambiguous loss’. This can be when there is physical absence and psychological presence, such as when a loved one has physically gone missing or it can be when there is physical presence but psychological absence where the person is there but not there. Like our Tilda.

I guess we just need to recognise that it is ok to grieve Tilda even though she is still here. It is ok to miss what we have lost. It doesn’t mean that we love the Tilda of today any less. It is ok to be sad and it is ok to say that there is absolutely nothing ok about this disease.


8 Responses to “She’s here but not here”

  1. Ricky November 15, 2013 at 5:25 pm #

    From the day I meet Tilda and started caring for her when she was at the centre until the day she left, She was always such a beautiful and joyful soul. Still to this day I miss her and think about her, I’m glad that I get to see updates on her progress, I think you are both doing a great job with Tilda and she is lucky to have such loving and caring people in her life.

    • teamtilda November 15, 2013 at 8:25 pm #

      Thank you Ricky! How wonderful to hear from you. It was a special time, Tilda loved Angliss especially the trampoline! Thank you for your kind words. Lots of love to you. Xo

  2. Jac November 15, 2013 at 6:42 pm #


    How you all keep going is beyond me. I am in absolute awe of you all.

    I love that you have clearly been (completely understandably) grieving for Tilda for ages now, but you do still find the joy in her and in life.


    • teamtilda November 15, 2013 at 8:26 pm #

      Wine helps! And the love and support from all. Thank you for yours. Lots of love. Xox

  3. Ben Smith November 16, 2013 at 10:00 am #

    I Love Matoolta, sooomoon, Beamer, and you, LOON! Boonxxx

  4. Cally November 16, 2013 at 8:22 pm #

    The remembrance of all Tilda was and now is. And the good times interwoven like diamonds. Hang in there Laura, we are there with you. Body and soul. Love Cally xx

  5. Juliet November 18, 2013 at 8:55 am #

    Of COURSE you are grieving now.But you do have the memories, the videos and, it seems, still the occasional re-emergence of the joyfulness. All my love to all of you.

  6. Wendy and Ken Brown November 18, 2013 at 1:08 pm #

    It makes sense that you are going through a process of grief with Tilda. The feelings of grief must be very painful and seem to come from the joy she has given you in moments in the present and in the past. She has a winning smile and she is a beautiful little girl with a loving family. We send you our love.

    x Wendy and Ken

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