The last eleven months have been so tough and I have always been conscious of how it has impacted my family. To go from having an ‘empty nest’ to having all four of us at home again, one stressed NQT, and one ill, unemployed child can’t be easy. However, not once have they complained, not once made me feel like a burden, not once have they allowed me to feel alone in this horrendous ordeal.
Parents have this unwritten rule that they have to be the strong ones and I can only imagine what it must be like to see one of your own children fall ill, lose their hair and identity and become isolated from all they know and love. I feel terribly lucky that although we have a relatively small immediate family, we are blessed with such a large extended one. Therefore, I know that mum, dad and maybe Jack (!) have people to talk to about what’s happened and offload their worries and upset and be comforted when it’s needed.
I asked mum, dad and Jack if they’d like to write a post from a families perspective of how alopecia has impacted their lives and I could see the trepidation in their eyes. However, mum has done it (no pressure boys!) and although it made me cry, it was a relief to actually read what I probably already knew about how she has felt about everything. So, here it is, guest post #2 from my best friend in the world.
“Typical of our daughter, she didn’t tell us how poorly she was because she didn’t want to spoil our holiday in Madeira: that was last October. When she came home we could see how distressed she was by her hair loss and really believed that a few weeks’ rest and TLC would restore her to full health and she would be able to return to Dubai at the very latest by January.
How wrong could we have been? During the weeks that followed, more clumps of hair fell out: her eyebrows and her eyelashes followed soon after. With some trepidation we visited a recommended salon in Notting Hill and bought the first hairpiece. Standing there watching Hannah have it put on and styled seemed such an alien thing to do but we believed it would help to restore some of her confidence: wrong again. I had to come to understand that for Hannah, not having her own hair helped to rob her of her own identity and she just felt ‘all wrong.’ I hated the situation then and I hate it even more now, eleven months on.
As laudable as it was for Hannah to have done the research and measure the longest parts of her remaining hair so that it could be donated to the Little Princess Trust that makes hair pieces for children who suffer from cancer, I cannot begin to tell you the size of the boulder that lodged in my throat when Richard, as requested by Hannah, shaved the remainder of her beautiful hair off. It seemed such an abominable and sacrilegious act: necessary for all of the right reasons but just plain wrong.
During the weeks and months that followed, what an irony that the constant pins and needles in her face and scalp even robbed her of the privilege of even wearing the hair piece. Seeing her struggle downstairs at times as a consequence of the muscular pain she also has to endure, is almost too much to bear at times. Normal family times sitting and watching the television have also had to be adapted as noise and light intolerance mean we watch in semi-darkness and often have to have the sub-titles on – if I’m honest we were doing that more often anyway on account of our own hearing problems so that hasn’t bee too much of an issue!
It has never ceased to amaze us that for the most part, Hannah has kept so positive and focused on all of the good things in life: forever thinking of other people and their needs, ever aware and concerned about others and their problems.
She was the one who organised our joint birthday party in July – the guest list; the play-list; the decorations – not to mention the help she gave in actually baking the cakes – no mean task I can tell you when your hands are swollen with muscle pain. She was the one who contacted so many of my past colleagues and pupils in order to collate the treasured memory book which she presented me with when I retired and of course, more recently she co-ordinated the biggest surprise of all, the arrival of my much loved brother Chris who travelled from Toronto to celebrate my birthday in Swansea – get my gist? Forever putting others first: what a star.
Thank goodness for the amazing support we have had in the form of friends and family and most notably the ones who give up their own time to give Hannah reflexology and reiki – words can never express our gratitude to them. When I go to my aqua class, I don’t talk about Hannah’s condition unless I’m asked as when I get into the water, I switch off for an hour or so and let everything drift away. But I do know who I can turn to if I need to and that is priceless knowledge. Unlike me, I haven’t given in to venting my own full emotions yet – I know that I have to keep strong and that’s what us mums do isn’t it?
We have had our laughs along the way, as many of you will know from reading Hannah’s insightful and informative blogs. But there is one niggle I have and I’m going to tell you what it is. It really doesn’t help when occasionally people say ‘it could be worse.’ We know that. We do have hope and we do believe Hannah will get better. We also know that there are many more people in this world who have the cruellest of situations to be dealing with and some of them haven’t even got the close family and friends that we do but – well – just saying!
Imminently, Hannah will see a specialist at King’s – we are hopeful that he will be able to point us in the right direction in terms of a diagnosis and recovery: it is all so unfair. At thirty years’ old she should be out there continuing her amazing career: I often think of all the children who are missing out because they haven’t got ‘Miss Green’ and all of her loving care and skills in their daily lives. She should be going out with her friends and not worrying about being too tired to do so. I hate what this condition is doing to her: hate is such an emotive term but this is how I feel. And I make no apology for it.”
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