A new world

4 Jan

Having Maggie has been quite a different experience from when Tilda was first born. I think I was fairly typical in feeling very overwhelmed with the whole new world and the sheer weight of responsibility felt very heavy. I am much more relaxed with Maggie and don’t seem to get as anxious or stressed out when she cries or is unsettled.

Her arrival has certainly changed the dynamics of the house though and part of me feels that I am missing out on a lot of Tilda time because Maggie is almost permanantly attached to my boobs! I look forward to the feeds settling down a bit more so I can work in some one on one time with Tilda. I am very grateful to Lex, my sister and Millie for coming and taking Tilda swimming over the last couple of weeks and can’t wait until I can get in there with her too.

As to be expected, Maggie’s arrival has also thrown me into a bit of emotional turmoil. I had quite the weeping session the other night – watching how Maggie has already grown and changed since her birth just highlighted to me how much Batten Disease has taken away from Tilda and from us. We watch one child grow and develop and learn and we watch the other regress and deteriorate. I can’t imagine my world without her and the inevitability of having a condition that is 100% fatal leaves no room for hope, and no chance for a happier outcome.

But, Tilda is well at the moment, she is cheery and bright and enjoying her days watching Dora and swimming and going on outings. Although the sword of Batten hangs over our heads and without warning could strike at any time, we ignore it.  We deny. We pretend. It is the only way. Day by day. The same can be said about living with a newborn too! Day by day, feed by feed knowing that these exhausting early days will pass and that we will get to see a first smile, a first tooth, a first step. And we will rejoice in every moment.

Happy New Year to one and all, may it bring a year of firsts for Maggie and a year of smiles and happiness for Tilda.

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xoxox

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7 Responses to “A new world”

  1. Juliet January 4, 2013 at 4:34 pm #

    The photos of the two girls together are lovely. I hope Maggie settles into a routine that gives you more time with Tilda soon and that meantime she is enjoying the swims and you’re ALL managing to keep cool. All my love

  2. JessB (Kate's friend) January 4, 2013 at 7:23 pm #

    Oh, I love the second photo of the two girls together! What babes!

    I’m so glad to hear that everything is going as well as can be, Laura. I have been thinking of you all lots xoxo

  3. Olivia January 4, 2013 at 9:50 pm #

    Dear Laura and Simon. Such wonderful photos and very moving words. You have two beautiful little girls!!! Congratulations. Keep going. You both are amazing. All love from Olivia. Isaac and Ann XXXXX

  4. cally berryman January 5, 2013 at 5:37 am #

    Every moment is precious with Tilda, Battens’s disease is a nightmare. The photos of Maggie and Tilda together-priceless. Thank you for the blogg and photos. Your blogg reminds me about what is important in life. Bless you all. Love Cally x

  5. Morven January 6, 2013 at 1:35 pm #

    Dear Laura and Simon, Tilda and Maggie, a very Happy New Year to you all! I love the photos of two gorgeous sisters just hanging out! Thank you for sharing. I hope you continue to enjoy the swimming season, and you can get in the water soon too Laura! Much love, Morven.

  6. Daryl January 6, 2013 at 10:20 pm #

    Such a beautiful photo side by side on the bed and Tilda looks a picture of contentment. Much of your journey is so tough and cruel and our hearts go out to you all but I hope you can truly enjoy and hold these special moments in time. Love Daryl

  7. Didi January 14, 2013 at 4:59 am #

    Oh my dear Laura Happy New Year hope you get all you wish for. Love the pictures of Tilda and wee Maggie both beautiful girls GOD bless them both and give you and Simon strength for whatever comes your way. Just enjoy the time you have with your girls and take one precious day at a time. You are in my thoughts always xoxoxo

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