So how did I come to this point in my life where I made a shift from wage slave to benefit scrounger?
Up until November 2004 I had a full time marketing career, I had degree and a master's under my belt together with professional qualifications and memberships. I had travelled the world with work, managed multi-million pound budgets and had either worked for or manged the accounts of some heavy weight, blue chip companies. The role I was in by November 2004 was supposed to be my "slowing down, being more close to home" job - I was head of Marketing and Student Support for a Further Education College. The plan had been to take some maternity leave then return on a part-time basis, in time for the college's busiest time of the year, Student Enrolment.
I loved working, I loved the sense of identity and purpose it gave me, I loved being part of a team and being appreciated for a job well done. I enjoyed dressing in "corporate" clothes, receiving my pay slip at the end of the month (even though a huge chunk of it always seemed to go on childcare!), putting my education and training into practice but most importantly it was great to leave it all behind at the end of the day and go home (well, when I wasn't travelling). I was not ashamed to admit that going to work was a bit of a cop out, I was not cut out to be a stay at home mum.
I had a stereotypical view of people who claimed benefits - I wanted to show my children that you could have it all, career and family and that an education was worth pursuing as it led to wonderful rewards. I knew nothing of the world of disability, illness, hospices - except for once a year when Comic Relief and Children in Need was on the TV, at which point I would get my credit card out a pledge some money and think nothing more of it.
So November 2004, when I was 29 weeks pregnant with our fourth (and much wanted) child and second daughter, I had no idea how my world was going to change so dramatically and so permanently. Being my fourth child I had a good idea when things did not feel right in pregnancy, I was being monitored for polyhydroamnios and I was now looking like a woman who was full term with twins, I was huge. I wandered into my ante-natal clinic which happened to be on the way home from work and that's when my life changed. I was admitted straight away. given steroids to strengthen the baby's lungs, and had several amnioreduction procedures to try and minimise the risk of pre-term labour. As it was Daisy was delivered by c-section (a normal labour was deemed too risky as all three previous ones had been very long - and very natural!) at 33 weeks, three days before Christmas. I spent Christmas in hospital, Daisy was in intensive care and poor Andy was at home 7,5 & 2 year old children. I remember shuffling into the neonatal unit on Boxing day, clutching my meagre bottle of expressed milk to see the staff gathered around a TV watching coverage of the asian tsunami - and I wondered what had happened to the world, to my world...
Needless to say, despite optimistic plans and strategies I never did return to work and with a heavy heart I handed in my notice so that the college could get on with recruiting a replacement. The world as I knew it had changed; after two months in neonates, Daisy did come home for a few (very fraught) weeks before being rushed up to Great Ormond Street Hospital at four months old for investigations for a possible tumour. She ended up staying there for three months during which time she visited intensive care with respiratory failure, had the first four of many general anaesthetics, was diagnosed with heart problems, a severe visual impairment and failure to thrive. They did not find a tumour and we know know in hindsight the agony she was in and the symptoms she displayed were down to rare nerve disorder, probably completely separate to her overall diagnosis of Costello Syndrome, in her gastro-intestinal system which meant that every drop of milk we were trying to force into her caused her huge pain.
We soldiered on for a few years, we embraced the diagnosis of Costello Syndrome, we even manage to attend the syndrome conference in Portland, Oregon. I thought of ways I could get back to work in between the hospital stays, when we were lulled into a false sense of security as we managed a few months out of hospital and on a reasonably even keel. We struggled financially on one income, but always in the back of my mind I thought this was a temporary situation and I thought that Daisy, like the other children with Costello Syndrome we had met would eventually stabilise enough for me to freelance occasionally or go back to college to train as a teacher. I even started an application for a part time teacher training course..
Again, we had a turning point in our life with Daisy - September 2008, when after a difficult summer as she struggled with pain and weight gain and only a week into starting school (and Theo just starting high school) she became unwell and we had to rush her to A&E for what we thought would be another few days of vomiting, fluids and then she would pick up. But she did not pick up, she got worse and worse and eventually on being transferred to GOS and having upper and lower scopes she was found to have severe and agressive inflammatory bowel disease, we know now probably caused by the severed dysmotility and repeated attempts to feed her, and in November 2008 she started TPN and left hospital nearly 12 months after first being taken to A&E.
With TPN and Daisy's subsequent deterioration our lives, already changed, changed immeasurably. There was not turning back, no hope for recovery, no part time work or college course. During one of our long hospital stays Andy was made redundant and the unthinkable happened - we were both out of work, with four children, one of whom was needing 24 hour care. Tax credits to supplement the carers allowance and Disabilyt Living Allowance were an essential part of our lives.
Andy and I would have driven eachother mad being at home together all day, so now he runs a very successful consultancy business. This allows him some flexibility to fit around Daisy's medical needs, but most of the time I go to hospital appointments, clinics, procedures on my own as he has to work. My full time job is Daisy and the three other children. And it seems to me that with each year my job description keeps expanding and yet I receive minimal remuneration for it - I am now qualified to access a central line (many nurses will not/are not able to do this), I can catheterise a mitrofanoff stoma, change a stoma bag, replace a jejenostomy and gastrostomy button, I am fairly proficient in makaton sign language, I can administer intravenous antibiotics, make judgements on types of pain relief analgesia required. And when I am not doing all those things I am checking stock levels of all the equipment and ancilliaries needed to run our mini hospital room, washing copious amounts of bedding after nights Daisy has spent vomiting or with a leaking stoma bag, cleaning, tidying, lugging heavy wheelchairs into the back of a car followed by lifting a 20kg child and various bags and attachments! I did not anticipate the new languages I would have to learn - carefully choosing my words when I make requests of social services versus healthcare because using a word such as "respite" with the wrong person may just come back with the answer "that's someone elses budget". I have had to become au fait with the world of statements and special education, and not just for Daisy - just incase I become too complacement I have another child with additional needs that can take me away from the day job of just being a mum - Asperger's and everything that comes with that syndrome has taken over our lives also.
I am a different person to the career woman I was 7 years ago, I have been to the edge I guess and seen another world and it really does put things into perspective. I value what I do immensely, this is the most important, rewarding, bone-achingly tiring job I have ever had to do. It's manual labour, intellectually challenging, goalpost moving, unrelenting, 24/7 slog. This is not just about being a mum plus, this is about being a nurse, an advocate, a housekeeper, politician and diplomat......I get thanks and appreciation from my family and friends, I know I am contributing to society, I am an essential component in the social and health care system, without me doing what I do the cost to the taxpayer would be huge as Daisy would need full time, funded specialist medical care in a residential setting.
My reward is to see my children achieve and grow, I truly believe that the reason Daisy continues to live to fight another day is down to the skills and effort Andy and I have put in to make that happen. But does our society value what I do? I am dependent on tax credits and carers allowance, all £55.55 per week of it. Andy works, sometimes I envy him that opportunity to escape into the corporate world and switch off. I would love to put my new skills to use, now I google part time nursing degrees and daydream about becoming a Gastrointestinal Nurse Specialist......
This is why I write this blog, so that hopefully by sharing a bit of our lives people will understand our world and look beyond theirs. We all walk such a fine line, we are all just a faulty gene, a birth defect, an accident or a chance happening away from entering a world like mine.
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) TPN (18) aspergers (18) cancer (18) Great Ormond Street (17) carers (16) parenting (13) autism (9) shooting star chase (9) children's hospice (8) Blogging (6) family (6) SEN (5) hospice (5) Mitrofanoff (4) BIBs (3) Britmums (3) Neuropathic Bladder (3) communication (3) diagnosis (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)