Adapting and living a new normal

7 Dec

Sometimes I look back over the last two years and can’t believe what we have gone through. I wonder sometimes whether its gradual unfolding gave us time to get used to things. It wasn’t a one minute she was fine and the next she wasn’t. It has been a long road and we have seen her change so much over that time.

Up to age 2 –  Normal child. Normal child behaviour.

Between 2 and 3 – ok, some speech issues , nothing too drastic, a bit behind, start speech therapy

age 3 – ok, seizures. Well, they suck but epilepsy is treatable, we can deal with that.

age 3 1/2 – ok, not just any old epilepsy but Doose Syndrome – one that is catastrophic in medical terms and difficult to treat. Alright, we can deal with that too – we will try medications, diet, whatever might work. If all else fails, there is the chance that she could grow out of it.

age 4 – ok, medications and diet is not working, she has a particularly severe case of Doose. Looking at long term developmental problems

age 4 1/2 – shit. shit. shit. shit. shit. shit. Shitty bloody Batten bloody shitty Disease.

And even since the diagnosis, things have changed. Matilda has stopped walking on her own and she has lost most of her words.

What strikes me most about all of this though is the ability we seem to have to adapt to each new change.  Each new phase becomes our new normal. We work out what is possible and what works and we adapt.

It seems strange to say, but life at the moment is actually really lovely. This peeling back to the simple aim of making Matilda happy has led to a fairly blissful existence. We know what is possible and we work our days around that. Matilda is cheery and funny and happy.

Exhibit A:

 

 

 

 

 

 

 

 

 

 

 

 

 

 

You just can’t be unhappy with that. This photo is courtesy of the very lovely Nancy Morrison from www.morrisonphoto.com who came and took photos of us last Saturday. More to come!

Even eating , which has always been a battle, has just recently come to a pretty good place. The wonder of cereal plus Pediasure means that we finally have something we know she will eat that also fills all of her nutrition requirements. I have just come off the phone with the dietician from the Royal Children’s Hospital who is going to do some number crunching for us to get the exact ratio for her needs. To date, I have unscientifically been dumping a few scoops of Pediasure into her Vita-brits of a morn so would like a bit more direction!

Speaking of Royal Children’s Hospital – we had our first visit to the swanky new building yesterday. It is very nice but very chaotic at the moment. We were actually the very 1st appointment with our pediatrican there so it was all a bit all over the shop. Suffice to say, the appointment was fine. There is nothing that she can really tell us so I think I will cancel the next one unless there is something vital that needs discussion. It seems a lot of effort getting there etc for not a whole lot of gain.

Next dr’s appointment is with the neurologist next Thursday where we shall be discussing Tida’s seizure vs ataxia activity but before that we have much more fun things to do. The first of which is a visit to the zoo tomorrow night. Should be great!

xo

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10 Responses to “Adapting and living a new normal”

  1. Danielle x December 7, 2011 at 10:56 am #

    What a great photo!!!!!

    • Nancy Morrison December 7, 2011 at 11:09 am #

      Thanks!!!
      Tilda and family were a real delight to spend time with and photograph!

  2. Nancy Morrison December 7, 2011 at 11:07 am #

    Hi Laura
    The high resolution files are uploading now so you will have lots of fun photos to display!

  3. jackie December 7, 2011 at 11:09 am #

    LOVE LOVE LOVE the photo, can’t wait to see more x

  4. Kell December 7, 2011 at 12:16 pm #

    Oh Laura, if only we could all parent that way – just being happy. I might even start right now and learn from you – pretty shitty way for you to have to learn it… but thank you! xx

  5. Juliet December 7, 2011 at 12:58 pm #

    What a wonderful photo! And you are right: life can sometimes become very simple (which is NOT to say easy!!!) indeed. And what a wonderful sunny little girl she is!

  6. Daryl Linnane December 8, 2011 at 9:52 am #

    So pleased for you Laura that you are all in a “good” place at present. And all credit to you and Simon…….you are truly exemplary parents . Beautiful photo of a beautiful happy girl. Love Daryl

  7. Martin Fabinyi December 8, 2011 at 1:33 pm #

    It was so great to see you all and look forward to Xmas. Lots of love Martin xx

  8. Diane December 8, 2011 at 4:42 pm #

    Always a delight to read your positive attitude and the way you’ve gone about handling these dramatic changes in such a comparitive short space of time. You Laura, and Simon have my utmost respect, admiration and love. An inspitation to everyone. Di X X X

  9. M December 9, 2011 at 2:18 pm #

    Always a joy! thinking of you all lots … xM

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