Saturday, 31 August 2013

Busyness and daily struggles

I'm sure most parents will agree that life with kids is busy. But those of us with kids with special needs will know that the busyness triples at times. I've realised it has been over 2 months since I last posted and I was trying to think about what had happened in the past 2 months. I feel like its been a whirlwind of work, housework, church, meetings, kids sport, ballet. But then added on top is OT appointments (for Sam as well as Evelyne), physio (for me as we'll as Evelyne), GP (for all 3 of us), paediatrician, rehab specialist, orthopaedic specialist, spinal surgeon, dietitian, orthotist, yearly visits to the cardiologist, ophthalmologist, and I may have missed one or two.

I'm not sure how to avoid this busyness.  Sometimes I don't know how long I can continue the relentless appointments and treatment. I have wondered at times if Evelyne really 'needs' to see all those people. Or if I should work on one thing at a time. But unfortunately the nature of Beals is it affects so many different parts of the body. Connective tissue is everywhere! And appointments with spinal specialists and orthotists are very important to keep on top of when dealing with a worsening scoliosis. 

As well as busyness in our daily scedule, there is also the tendency to feel overloaded emotionally. I tend to go through stages where i feel very overwhelmed and out of control. I hate watching the daily struggles that Evelyne goes through. When she is in pain while her body adjusts to a new brace or cast,  when she struggles with sickness and chest infections and we have to force her to use the nebuliser, or simple things like her struggle to run or do ballet steps like her friends.

I have come to realise the importance of friends and family who understand. The times I can cry on a friends shoulder, have a cuppa and some chocolate and a debrief. It is so important to have these people in my life for support when I do feel down and out. To have their emotional support as well as practical support when I need it. I am very thankful to God for the family and friends he has given me who are such an encouragement in the tougher times. 


  1. Thanks for posting this Lou; it's very honest. We're conscious of just how many things there are to juggle in your life, and the challenges when Evelyne struggles. Your Mum and I are so thankful that Evelyne is such a remarkable and feisty little girl, and that you are such a great champion for her, ensuring that she gets the best treatment and support. And by the way, you forgot to mention that most of the medical visits are 3 hours away and you need to leave Jon and Sam for 2-3 days at a time.

  2. Thanks for sharing Lou. You have a great attitude, you really do!
    You are so servant hearted, and do things without complaining, and that sets a massive example (and challenge) for me as I struggle with chronic illness. You do a great job of doing it all without complaining, and God is working in and through you, and that is something to be thankful for.
    Love to you, Jon, Sam and Evelyne xx

  3. Hello, my name is Jasmine and I am from New Zealand. I am 29 years old and just this past week I have received the results of my genetic tests... I too have Beal's syndrome. Thank you so much for your blog... I just came across it while searching to find if we have any support groups here in New Zealand but it looks like the closest support groups are in Australia :-( It's very interesting to see how other people live their lives with Beal's - you have a great attitude which makes all the difference! I have just written my story on my blog yesterday... feel free to read it :-)

  4. Hi my baby is being tested for beals. Would be great to talk to you. Thanks Shelley

    1. Hi Shelley,
      I have sent you a google message on your profile. I'm not quite sure how to get in contact with you. Would love to talk/email etc.