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.
