Batten Family Meeting

15 Oct

I had the privilege and heartbreak of meeting a whole bunch of Batten families over the weekend. Families with children who were still here and families with children who had passed away. It was surreal and challenging and emotional and wonderful and terrible.

These are families  who understand myoclonics, feeding tubes, drop seizures, epilim, hospital stays, suctioning and wheelchairs. These are families who understand loss and grief. There were tears but there was also laughter. It was overwhelming at first, I knew a few faces but not the majority. I was mistaken sometimes for a friend of a family rather than a mum of a Batten child who had died. Most people there never got to meet Tilda. I found that hard. But as I settled in, I started to speak one on one to mums and dads. I got to catch up with my friend Peta and cuddle her beautiful Mia.


I caught up with another friend Lisa and finally got to meet her gorgeous Katie, someone I had been longing to meet, her love for Dora and swimming resonating strongly with me. I met other families and children, names on Facebook turning into real people and real connections, new friendships forged.

I went with Nicole and Maggie. Nicole met and fell in love with Max, a beautiful boy born 6 days after her own Jack. It was uncanny how similar they were.


Maggie, as is her wont, was a social butterfly who combated any descent into sadness with her utter delight-fulness.

On Sunday, there was a memorial service.


It was hard. It was battering to listen to the names of children who had died. So fucking many. Name after name, waiting to hear Tilda’s, waiting to hear Jack’s. Which names will I hear next time?

It is coming up for a year since Tilda died, which is so unfathomable to me. I feel like these next few weeks leading up to the dreaded day will be hard. I am teary and emotional. Stoic and unmoveable.  Unlike her birthday which could be celebrated, I don’t know how to mark the day. I don’t want to organise anything. But I don’t want to do nothing.

I have often heard that the second year is sometimes even harder than the first. The realisation that it is forever hits. You spend your first year just getting through each significant date. The first Christmas, the first Mother’s Day, my first birthday, her first birthday. It is the second year which cements the fact that she is not coming back and you have to get through it for the rest of your life.

It is not all sadness and sorrow. Friends made over a shared weekend help shoulder the pain. And my friends and family, my darling wonderful excellent friends and family who have always been there. They help everyday.

You just keep going.


8 Responses to “Batten Family Meeting”

  1. Treen October 15, 2014 at 5:50 pm #

    How bitter sweet for you Laura. Just keep swimming hey… Lots of love and strength to you I will forever admire the way you can share something so personal so articulately. Even by throwing the F word in so well. Lots of love to you. As always hope to see you soon. Just keep swimming, lots of love Treen. Xx

  2. Treens October 15, 2014 at 7:49 pm #

    Love you x

  3. Cally October 16, 2014 at 3:54 am #

    Beautiful words: missing Tilda, thinking about the others with Batten’s and in the middle Maggie being magical. No one will really understand what you feel- unless they have experienced what you have experienced. Lots of Love Cally xx

  4. Irene October 16, 2014 at 6:33 am #

    Dear dear Laura, a few hugs is probably all I can do for now OOOOOOOOOOOOOOOOOOO and a few for Simon too, they will have to come from you of course OOOOOOOOOOOOOOOOOOO and Maggie will be giving you lots of hugs but just in case OOOOOOOOOOOOOOOOOOOOOOOOOO.

  5. Juliet October 16, 2014 at 7:41 am #

    I am so glad that Maggie was with you to bring happiness to everyone on this difficult occasion. It sounds like a great, though harrowing day. My thoughts and love are with you all.

  6. Deb O'Neill October 17, 2014 at 9:04 pm #

    What a lovely story. I would have enjoyed talking to you. My son Tyrone is on the battens website to affected to travel anymore. However when we did go to the conferences how amazing are they.. To have a conversation a they just get it.. No explanation that’s different. We continue our journey Ty is 23 now one day at a time… Love and strength to you and your family.

  7. Daryl Linnane October 18, 2014 at 3:49 pm #

    Keeping you always in my thoughts Laura ….Yesterday, today and the many tomorrows. Love Daryl

  8. Jennifer Medley October 25, 2014 at 7:13 am #

    Wish I could have been there too. xo

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