22 Mar

We are still in vomitville. It isn’t a very fun place to be but I am comforted by the fact that Tilda doesn’t seem unhappy or unwell or otherwise affected. The culprit is likely to be either the higher calorie formula that she is on, or the sheer volume that we are pumping into her. Both factors are being addressed and hopefully, hopefully things will settle down soon.

I miss Tilda’s voice. I miss her words and the way she would say Maaaaaaaa-maa. Her husky voice that was only just starting to deliver her own thoughts and opinions before it all got cruelly taken away. There aren’t many words these days. Lots of noises though. She can get “Daddy” out with a struggle. “No” seems to have stayed the course. What would she say if she could?

There are times when the lack of words is overwhelmingly frustrating. In the night, she calls out with a noise. I don’t know what it means. She doesn’t seem unhappy. The current epidemic of vomiting – would she tell me that her stomach hurts? That the formula tastes horrible when she burps? That she is so unbelievably full so please stop feeding her? We don’t know so we have to guess. And try different things in the hope that something will work for her.

Communicating is such a vital part of us interacting with each other and though I know that Tilda communicates in her own way, with gestures and smiles and noises, I would so very much like to sit down and chew the fat with her. Her speech at age 2 was developmentally ahead and I eagerly awaited the days when we could converse together. We would muse on who she liked better, Dora or Diego or have an argument about which pink top she should wear. During the year between age 2 and 3, there was a definite lack of  speech development and after a developmental checkup just after her third birthday, we started the process to get some speech therapy. Looking back, I can see that she was struggling to put thoughts and sentences together.

(And check out the eating! Amazing!)

But even though her speech wasn’t quite where it should be,  I still looked forward to our future chats. As time went on though, her speech didn’t improve and then, once we got the Batten  diagnosis, words seemed to disappear at a rapid rate.

We have chats in my dreams. The other night, I dreamed that she was talking to me and the first thing she said was  “You know Mama, I actually don’t really like Dora at all!” I somehow knew that it was only a dream. 🙂

I wish I had captured more of her “before”. Captured all the words before they disappeared. For now, I have days when I can look back on the “before” videos and feel so grateful that we had that time. There are other days when watching them makes me weep uncontrollably, and still other days, when I cannot watch them at all. Today is a reflective day with no weeping but a feeling of wistful nostalgia. I am grateful for those “before” days but I am also grateful for today. Today, Tilda woke up with a burst of babbling and a cheery smile. She had been a little distant for some reason over the last few days but this morning, I was covered in kisses. Definitely something to feel grateful about.

Speaking of gratitude, I am also tremendously grateful to the wonderful people at Simon’s work who donated the proceeds of a friendly inter-team cricket match yesterday to the Batten Disease Support and Research Association. With the score a tie (bit of diplomacy going on there I think!), the total raised was over $1300 and still rising! Thank you so much to Jess for organising it and to everyone who took part.

Thank you so much also to everyone who has donated so far. We are inordinately grateful for all the wonderful people in our life and we cannot imagine going through this without the support you have shown us. If there is any consolation to be found with our situation, it is that it has brought the kindness of so many to light.

Tough Mudder is only 9 sleeps away and I am very  much looking forward to the spectacle! There is of course, still time to donate if you haven’t been able.

Everyday Hero Page

Thank you. And much love to all.



14 Responses to “Words”

  1. kylie March 22, 2012 at 3:50 pm #

    The sweetest thing. I hate that we haven’t heard that voice for so long. You’re a brave woman to watch these.

  2. M March 22, 2012 at 4:10 pm #

    How do I write clapping??? I am clapping…. more fetta and more Tilda!

    love you so much…x

  3. Clare March 22, 2012 at 7:50 pm #

    Love that video- she is a gorgeous little person!

  4. Alex March 22, 2012 at 8:53 pm #

    Weeping uncontrollably

  5. ann Seddon March 22, 2012 at 9:51 pm #

    Darling Laura
    What an inspiration it is to see your devotion , support and strength, for your beloved Tilda
    She sounds so remarkable and our love from afar is only a tiny ray in the many beams of light and sunshine you give out from your amazing team in supporting Tilda
    Words fail us but you are constantly in our thoughts
    All our love Chris and Annxxx

  6. Danielle x March 23, 2012 at 5:35 am #

    After tearing up while reading this, I laughed out loud when Tilds said she got her stamp from India! For all you know, that could may well be where it was manufactured & she was one step ahead of you!

  7. Juliet March 23, 2012 at 7:42 am #

    Thinking of all of you, and hoping that they can get the formula and the amounts right soon AND that Dora continues to be a source of entertainment! I hope the weather’s kind forthe Mudders and the Day at your place. I’ll be there in spirit. All my love

  8. Benita crocker March 23, 2012 at 7:44 am #

    We are all still with you Laura, watching your beautiful girl, every step of the way…and tell Simon that if he thinks doing some hardcore obstacle course wil spur me on to do some other running fundraiser….he’s probably right! love as always xo

  9. Daryl March 23, 2012 at 9:23 am #

    Hang in there Laura. Tilda is just gorgeous but such a tough tough journey for you all …. your courage, resilience and devotion are beyond words. In the practical sense I just hope there is at least some relief and the vomiting problem is resolved. Love Daryl

  10. cally berryman March 24, 2012 at 11:28 am #

    Dear Laura,
    Indeed your words of wisdom to hang onto all that is and enjoy is important.
    How I wish and pray that you did not have to go through this and that Tilda was that fabuous careful little girl again.

    It breaks my heart to hear the difficulties.
    Warm hugs love Cally Xx

  11. Martin Fabinyi March 26, 2012 at 5:58 pm #

    Your words are so brave and your courage immense.

  12. Didi March 29, 2012 at 12:05 pm #

    My dear Laura,I loved hearing Tilda before this terrible disease took her words.She is so beautiful.All of you are always in my thoughts my dear friend.You are so brave and strong and courageous I admire you.I guess all you could do is find the good in every day and the joy. I’m happy to hear Tilda’s doing good and is happy.I pray the vomiting stops soon or has already.You,Simon and Tilda are always in my thoughts and prays stay strong my friend.God is with you.

  13. ben smith April 1, 2012 at 3:59 pm #

    dear LOOn,u r 1 of my favorite sisters, i would feel pretty cool i reckon if we wernt related but still as close. but we r, . close that is ,and related too, and i love you. Ben


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