Thank you!

3 Jul

Thank you so much for the outpouring of love and excitement and joy! It has taken me a while to process everything to be able to write about it all. There has been such an array of emotions – elation, fear, sadness, anxiety, anticipation to name just a few.

To go back to that moment – we arrived at the genetic counsellors office about 5 minutes before we were due, I was so glad to have Tilda there, to fuss over and focus my attentions on. She, of course, ignored me completely, happily watching Dora on the portable DVD player. We only had to wait a few minutes before Nikki, the counsellor, came out of her office to call us in. She didn’t give much away but ushered us through her office door. Before I even really sat down properly, she just came out with it, “It’s good news!”

I, of course, burst into tears. I think the build up to that moment just exploded at that point! She went on to tell us that our baby is NOT affected by Batten’s but was a carrier. This, we can deal with. After all, some of the finest people we know are carriers – Grandpa, Pop and of course Simon and myself. She asked if we wanted to know the gender and we absolutely did – the more we know about this baby the better I say! When she told us that it was a girl – I, naturally, burst into tears again. They were happy tears but mingled with a bit of shock. For some reason, I had really thought that it would be a boy. I think there is a lot behind that – namely that I thought it might be easier to have a completely different gender. Easier to not make comparisons, easier to separate out from our early memories of Tilda. I will confess that it took me a good couple of days to get my head around the news that we would be having a girl. It seems crazy, especially when all we really care about is that she will be healthy but emotions do not do as they are told and do not follow logic. Now, I can’t wait to meet her. I am so delighted to be having another beautiful daughter. A sister for Tilda. There is nothing better than a sister (mine rocks!).

Of course, all of this is also tempered with underlying sadness that our new daughter will never know the Tilda that we know. We will tell her stories, and show her videos but it is not the same. The sadness comes when we realise that although this is the absolute best news, it does not change things. We will have a daughter, and we will lose a daughter.

I have been very angry at Batten’s in the last few days. A mum wrote on the facebook support page once, that if Batten Disease were a person, she’d like to punch them in the nose. I don’t know if I would resort to violence but I completely understand the sentiment behind it. It’s such a mean disease. Unbearably mean.

Tilda’s vomiting has returned – not with a vengeance but enough to be anxiety-inducing. I am waiting to speak to the gastro doctor tomorrow and we see our pediatrician on Thursday. We have stopped using the J-tube because although the Coke did work, it unfortunately kept blocking and seemingly always at about 2 in the morning. So we are just doing gastro feeds which she had been tolerating quite well up until last Friday. Since then, we have had a few good days and a couple of not so good.

And that’s the way it goes isn’t it? For all of us really.

Today was a good day and today we continue to rejoice in our good news. I think more than anything it is such a delight to have something so positive to get excited about, something to look forward to and something good to hold on to. Thank you so much again for the enormous support we have received. It fills our hearts and makes us feel strong, even when we are not.




10 Responses to “Thank you!”

  1. morrisonpix July 3, 2012 at 6:41 pm #

    and now I am crying! what a mix of emotions and so eloquently described by you. all my love to you… ❤

  2. Cally July 3, 2012 at 7:36 pm #

    What a journey- 10 lifetimes in one.
    I am so happy for the great news about the perfect little sister for gorgeous Tilda.
    And sad to hear that Tilda is having the vomiting again.

    Sending you all many hugs
    Love Cally xx

  3. Jac July 3, 2012 at 8:02 pm #

    Why is there no enormous hug emoticon?!

    Imagine there is and it’s here:

  4. Danielle x July 4, 2012 at 7:39 am #

    Goosebumps! x

  5. Juliet July 4, 2012 at 9:25 am #

    I hope that something can be sorted out about Tilda’s feeding problem. So exhausting for all of you and distressing. And yes, some of the world’s nicest people are Batten’s carriers and let us all holpe that by the time baby X needs to worry about it, there Will Be a Cure and a simple way of de-activating that gene! All my love

  6. Clare July 4, 2012 at 9:00 pm #

    That is such great news about bub, hope you sort out Tilda’s latest feeding tube issues so that you can have a few boring weeks!! Very happy for you all…

  7. Terri Beggs July 5, 2012 at 9:53 pm #

    Wonderful news , congratulations Laura & Simon and a lovely gift for Tilda and all.
    Hope your days improve and Tilda’s feeding gets sorted.
    Terri & Roger

  8. Jan and Dave Marshall July 6, 2012 at 3:17 pm #

    Certainly ‘something to look forward to and something good to hold on to ‘as you so aptly put it. We think of you all a lot and hope the coming months are happy and healthy ones.
    Jan and Dave

  9. Adam and cheryl July 7, 2012 at 10:27 pm #

    Chezzie and I can’t wait for the extra little girl to join you, Simon and Tilda. So exciting and if anyone in the world deserved some good news, it’s you guys!

  10. Didi July 10, 2012 at 7:54 am #

    Thrilling news for you and Simon that you guys will have a healthy baby girl and that Tilda will be a big sister. You both deserve this good news. Life is amazing and God is good.I hope that Tilda’s vomiting comes to an end soon and they finally tell you what’s causing it.
    All my love my dear Laura!

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