We have hit the wall. Not surprisingly really, 17 rounds of gruelling chemo over 3 days, an intensive course of Selective Internal Radiation Therapy (SIRT), coupled with a very complicated family life is going to have it's toll.
Showing posts with label family. Show all posts
Showing posts with label family. Show all posts
Hitting the Wall
Marathon runners know this term well - hitting the wall. That point in the race where your reserves have run out, you legs are screaming in pain and you have to do all you can to overcome that voice in your head which is saying "you can't do this".
We have hit the wall. Not surprisingly really, 17 rounds of gruelling chemo over 3 days, an intensive course of Selective Internal Radiation Therapy (SIRT), coupled with a very complicated family life is going to have it's toll.
We have hit the wall. Not surprisingly really, 17 rounds of gruelling chemo over 3 days, an intensive course of Selective Internal Radiation Therapy (SIRT), coupled with a very complicated family life is going to have it's toll.
Spontaneous Planning
We are at the end of another half term and have made it through in one piece. I am so grateful for every school holiday we get to spend together because we have lost so much family time over the years. This time of normality has also shown us how different our lives in the real world are as we try to function as a family, this week provided many examples and made me realise that what I am constantly trying to do is spontaneously plan in order to do the normal childhood stuff other families take for granted.
It can't have escaped anyone's attention that there is a lot going on in my home town of London at the moment - all this week we have had the Diamond Jubilee Celebrations then in a few weeks time the Olympics start.
Volunteering - it's a two way street
Not many people know this, and I don't really talk about it (not because I don't want to, I guess talking about my family takes up most of my time!) but in what minimal spare time I have in my life I am a leader of a Girl Guide Unit.
Some of you may be new to this blog and not realise how little spare time I actually have, if you read some of the old posts and the All about me link the you will see that my life is very full on and spare time is something of a premium in my world. But being involved in Girl Guiding is something very important to me and so I make time for it.
Actually, thinking about it my experience as a Girl Guide has really shaped a lot of my approach to life although maybe I didn't know it at the time. Like many women my age I was a Brownie (no Rainbows in my day) and once I turned 10 I moved up to Guides. Those who know me well will not be surprised to learn that I embraced everything about Guiding, I did every badge I could, I entered every competition, I read my Guiding Handbook from cover to cover and I achieved the ultimate Guiding accolade - The Queen's Guide Award.
Yes, I have kept my old Guide uniform!
I have Costello Syndrome, Costello Syndrome does not have me
I have amended this quote from one I saw on the back of a running vest as I ran the Bupa London 10k on Sunday - the quote I saw was "my name is Jo, I have MS, MS doesn't have me". That really inspired me.
If Daisy could talk fluently and tell you how she felt then I think she would say this because this is how she lives her life.
Every single day is a monumental challenge for Daisy and truly I do not believe even those closest to her know what a challenge it is - I guess only Andy and I as her parents have a little inkling of the mountains Daisy has to climb day in day out just to squeeze every moment out of her day and be the little girl she wants to be.
If Daisy could talk fluently and tell you how she felt then I think she would say this because this is how she lives her life.
Every single day is a monumental challenge for Daisy and truly I do not believe even those closest to her know what a challenge it is - I guess only Andy and I as her parents have a little inkling of the mountains Daisy has to climb day in day out just to squeeze every moment out of her day and be the little girl she wants to be.
Mixed Emotions
Well we are back from holiday and survived intact - just. Daisy as always continues to amaze us with her resilience, courage and positive outlook against all the odds. She loved being on holiday, she loved the ferry and our little cabin, she loved the apartment, the beach, the places we visited, just being with her family but most of all she loved sleeping in a little bed next to her Mummy & Daddy - that was the most exciting thing for her, to be able to reach over in the middle of the night, tweak the duvet and tell me that she is Peppa Pig on holiday!!!
We are so proud of how Daisy adapts to new situations and takes it all in her stride. Of course it was hard work; broken nights, juggling meds and IVs and TPN with family plans, but we survived and we can't wait to do it all again, sadly however, we have agreed that this is our last holiday as a family.
For a boy with Aspergers, who has sensory issues and craves routine, darkened rooms and familiar surroundings, smells, tastes and objects, a holiday in France with a boisterous family was maybe not such a good idea. Theo had recently started on regular medication to help with his chronic migraines and to cap it all he had a bad reaction to the tablets which exacerbated his asperger traits meaning that his sleep patterns were all out of kilter and his anxiety levels were heightened resulting in several high octane meltdowns. Not good in the confines of a small apartment!
We are so proud of how Daisy adapts to new situations and takes it all in her stride. Of course it was hard work; broken nights, juggling meds and IVs and TPN with family plans, but we survived and we can't wait to do it all again, sadly however, we have agreed that this is our last holiday as a family.
For a boy with Aspergers, who has sensory issues and craves routine, darkened rooms and familiar surroundings, smells, tastes and objects, a holiday in France with a boisterous family was maybe not such a good idea. Theo had recently started on regular medication to help with his chronic migraines and to cap it all he had a bad reaction to the tablets which exacerbated his asperger traits meaning that his sleep patterns were all out of kilter and his anxiety levels were heightened resulting in several high octane meltdowns. Not good in the confines of a small apartment!
The Adapted Family
I'm participating in the Define Normal Blog Hop this week where the challenge has been given to us special needs mums to define what we consider normal in our lives and embrace the things that make us different to other families.
I was thinking about this and started remembering stuff I learned a long (very long) time ago at University when I was an undergrad studying Social Anthropology. My interest was specifically how peoples adapt to their environment and how communities evolve to take into account the external influences of their environment. For those of you who are curious, my dissertation was on the significance of the Potlatch Ceremony among the Kwakiutl peoples of the Pacific North West....but that is all another world away..
So I was musing on the blog hop topic, which focuses on the things we take for granted as special needs families which may be perceived as weird or odd in the wider world and I realised that what we all do is adapt, what actually is "normal" anway? The only thing that is actually normal is a cycle on the washing machine... we have all adapted to fit our own influences that shape our family. Things that I take for granted like putting a tube into my daughter's tummy to empty her bladder are clearly a bit away from the norm for any 7 year old, but we have adapted our lives to accept that if she is going to avoid urine infections this is what we need to do. The normal for us is that way because our family has adapted to survive as a unit around the demands of the needs of the individuals in it. We all do what works for our family unit, regardless of whether or not there are additional needs.
I was thinking about this and started remembering stuff I learned a long (very long) time ago at University when I was an undergrad studying Social Anthropology. My interest was specifically how peoples adapt to their environment and how communities evolve to take into account the external influences of their environment. For those of you who are curious, my dissertation was on the significance of the Potlatch Ceremony among the Kwakiutl peoples of the Pacific North West....but that is all another world away..
So I was musing on the blog hop topic, which focuses on the things we take for granted as special needs families which may be perceived as weird or odd in the wider world and I realised that what we all do is adapt, what actually is "normal" anway? The only thing that is actually normal is a cycle on the washing machine... we have all adapted to fit our own influences that shape our family. Things that I take for granted like putting a tube into my daughter's tummy to empty her bladder are clearly a bit away from the norm for any 7 year old, but we have adapted our lives to accept that if she is going to avoid urine infections this is what we need to do. The normal for us is that way because our family has adapted to survive as a unit around the demands of the needs of the individuals in it. We all do what works for our family unit, regardless of whether or not there are additional needs.
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