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 had an idealised vision of perfect children and a perfect family life when I embarked on this parenting adventure but years later with redundancy, bereavement, disablity, hospitals, depression, autism all rearing their heads we have adapted to a life that works for us, it may for those looking in seem different, but then this is my norm. I found myself writing an encouraging message to a friend who is going to be trained up soon to administer TPN ( Total Parenteral Nutrition) , in the same way we were trained nearly 4 years ago. I told her that in all honesty I actually enjoy doing TPN, it is so embedded in our routine that it is the norm, I like that time in the evening when I shut the door and prepare all the IVs and equipment and connect Daisy's drip, I have the same feeling that I have when I see one of my other children finish off a healthy meal , I know that the work I have done is nourishing Daisy and keeping her alive.
I cannot allow myself to dwell on the weirdness of it all, the fact that this is not a normal way for your child to receive nutrition, of the risks of TPN, I will only allow myself to focus on the positives, that it gives her the nutrients she needs in the way she needs them, directly into her bloodstream. In the same way I can honestly, hand on heart say I have never dwelt on what life would have been like if Daisy did not have Costello Syndrome, for someone with such a vivid imagination I cannot actually imagine what it would be like for Daisy to be a "normal" 7 year old, that mental picture just does not exist because our family has adapted to life with Daisy (and Theo to a certain extent!) to become the family we are today, so trying to imagine life without Daisy's illness is impossible because I would have to completely reinvent our family dynamic...
Going to Great Ormond Street we feel "normal" because we are surrounded by lots of other children with gene mutations, disabilities, tubes, pumps, wheelchairs. It's the same at the hospice. And when we meet up with other Costello families it's wonderful because our children all look so similar. We have learned to take comfort from this alternative world we now inhabit and draw strength from knowing we are not alone.
I wonder if I ever realised 20 plus years ago in lectures that seemed so boring at times that I would keep with me a fundamental element of my Anthropology degree, anthropology literally meaning "the study of man" - that "normality" is relative, that we cannot judge another culture or society based on our own norms, we can only seek to understand their behaviours based on the environmental influences that have shaped them.
So medical stuff, costello stuff, asperger stuff, sibling stuff, communication stuff - these are all part of our family, we work around the problems, we constantly adapt and evolve and we make these things part of our life, because without them we would not be the family we are today, and despite the odds stacked against us I don't think we're doing too badly...
Websites close to my heart
- Shooting Star Chase (Daisy's Hospice)
- Great Ormond Street Hospital Children's Charity
- Torbay Holiday Helper's Network
- Sick Children's Trust
- Daisy's Angels - Facebook Page
- About Costello Syndrome
- Asperger Syndrome
- Caudwell Children
- Together for Short Lives (Children's Hospices in the UK)
- Costello Syndrome Support Group
- Give Kids The World
- PostPals - Putting Smiles on Sick Children's Faces
- Singing Hands (Daisy is their No1 Fan!)
special needs (85) costello syndrome (43) disability (32) aspergers (19) TPN (18) cancer (18) Great Ormond Street (17) carers (16) parenting (14) autism (10) shooting star chase (9) children's hospice (8) Blogging (6) family (6) SEN (5) hospice (5) Mitrofanoff (4) diagnosis (4) BIBs (3) Britmums (3) Neuropathic Bladder (3) communication (3) holiday (3) benefit cuts (2) david cameron (2) gastroenterology (2) singing hands (2) travel insurance (2) BSL (1) Child Hospice (1) Colectomy (1) antibiotics (1) benefit scrounger (1) bladder (1) france (1) health (1) line infection (1) makaton (1) portage (1) siblings (1) sign language (1) sign supported english (1) ultrasound (1)