Ugh! Sometimes I want to scream and shout at the Universe, WHY? Why my children?
Life, it has to be said can be exceptionally unfair. Caring and loving our chronically ill children is tough - not the physical doing of but the having to watch them going through the many bad days which are full of pain, anxiety, fatigue and frustration but being absolutely helpless in the ability to ease their suffering. All I can do is let them know I am there, loving and supporting them as best I can whilst acknowledging their distress.
There are times when trying to give basic motherly love is impossible - when just holding them close hurts their skin, the light hurts their eyes, food brings on extreme nausea and the slightest noise makes their head ring. It has been known for me to not use the hoover for weeks at a time because they can't bear the noise it makes.
Yet, through all this I am astounded at their tenacity and humour, their ability to make the best of the hand life has dealt them. They are a constant source of pride and inspiration, I find it is incredible how strong they are and the depth of maturity for their age and most of all the desire to still help others whilst suffering themselves.
As a child you just take for granted the fact that you can go to school, gain an education, go out and get up to mischief with your friends and just live life to the maximum without any worries - it's just what you do - isn't it?
For our family and sadly many others I have since been in contact with children suffering from ME this isn't so.
But it's not all doom and gloom here, fortunately our eldest has managed, with support, to do exceptionally well in her GCSE's, despite depression, anxiety and several day long stress induced migraines she kept on going, refusing to give up and has since started College. Life isn't easy for her, she is still working out how to manage and still requires the support to continue - but I have no doubt that once again she will prevail and succeed in whatever she decides she wants to do. However, I do worry about the pressure it is putting on her and have counselled her to possibly reduce her work load at the end of this year and take on less for her second year at College, to choose what she WANTS to do and not what she feels she OUGHT to do. Whatever she decides, we will back her 100%.
The news recently highlighted the increase in depression and anxiety in teens and that certainly seems to be true from what I have seen - the question I ask myself is why? We have NEVER put pressure on our girls to achieve high targets at school - our philosophy is for them to do their best and that is all we ask. To choose subjects they like and enjoy to study and not necessarily follow the path of academia - if you enjoy what you do you are most likely to succeed and want to do well in it. So where is the pressure coming from? I personally feel its a combination of the schools, government targets and the media fuelling competition to do well . Perhaps if more attention was placed on the individual students and their needs, abilities and desires this wouldn't be such an issue. I am not sure what the answer is, just me pondering and trying to work out the best route for my own girls I suppose.
As for my youngest two, they haven't been in mainstream school for a few years since they developed ME and so have missed out entirely on the day to day school life and friendships that you would normally take for granted. We wasted years trying to send them into school on a seriously reduced time-table which didn't work and then going to a school room in the Children's Hospital for just a few hours a week which again didn't work due to the brain fog and physical symptoms of the illness which left us floundering and the girls at home with no education. BUT again - there is HOPE, we have been to a meeting this morning to meet the girls tutor (paid for by Medical Education) - who will come into our home twice a week to give one to one tuition to them. This is brilliant news for us and for them - we HOPE if all goes well over the next two and a half years the youngest will be stepped gradually from home tuition into Hospital Schoolroom and then into school and heavily reduced time-table to eventually gain her Maths and English GCSE's. For middle child it's far more complicated - medical education funding cuts off when she reaches 16 in July - so after that we don't know and are currently looking into funding to be able to continue her home tuition from then onwards.
Another big issue for all girls is anxiety and panic attacks - Tasha wrote brilliantly in her blog
how this affects her and yet no matter what all 3 girls continue to try to beat the anxiety. We have a fabulous CAMHS team too who are supporting and helping us with that and my hopes that in the future anxiety and panic will be in their past having been shown how to address it, face it and control it.
Despite everything we have been through over the past 4 years, I am optimistic for the future. We have come this far and achieved so much. I am immensely proud of my children they have made the best of their situation and it has brought out a very artistic and creative side of them which may otherwise have been squashed if they were living "normal" lives. Whatever the future holds, I believe it will promising.