Lessons we learn and the lessons we learn from trying to learn from them?

My last post was mainly about the new challenge I'm taking part in, and the weight loss (or not)!  I don't blog much about Isla now.  I did have an old blog telling Isla's story, about what we went through with Isla's treatment, but that is no longer available.
As Isla has been off treatment and getting older I try to focus on the rest of our life.  Many people that we meet have no idea of what she's been through, including most of the children she knows, and with Isla being so young (3 years old) that seems easiest.  I've put Isla's journey away into a little box inside my head, as a way of coping.  The lid of that box is not firmly shut, infact one flap won't stick down.  I don't want it to stick down.  It's my daily reminder to cherish every moment with her as we never know what's around the corner and to keep doing my bit for awareness, for charity, for children and for cancer.  I don't know if that's the best way to deal with life.  Sometimes I think it might be easier to carry on as if it never happened, but I couldn't.  The lesson I took away from her journey was to make the most of life and not to worry about the small things.  
I know the box is large and even with it closed, it takes up a lot of head room.  When Isla has any medical tests or scans are approaching is a time when the box is open and I get anxious worrying if I need to unpack that box and start to live that life again.  We're currently waiting on dates for her 6 month scans that are due at the end of May so the anxiety is creeping up.
When Isla was diagnosed I'd not long began using Facebook and then found some other families with children who were suffering from Neuroblastoma and other childhood cancers.  Facebook was an easy way for me to update friends and family on Isla's progress from hospital at a time when I found it hard to explain to people what she was going through, and didn't have to repeat myself over and over to lots of different people.  Updating facebook and one text to my sister was all that was needed to keep people updated, and allowed me to concentrate on taking care of Isla.  The network of Neuroblastoma and oncology families I found on facebook was great, and I've made lots of friends going through similar things who can support you when times are tough.  Of course, not everyone in the oncology world gets along, people have different views and opinions, and can fall out.  But mostly, eveyone supports each other.
One of the the oncology mum's who is always offering support and has such a positive attitude is Jaime Mighty.  Her son Lewis fought Neuroblastoma.  We first met Jaime (for real, not just facebook) and her family at an outing with the charity Families Against Neuroblastoma at Alton Towers two years ago.  It was only a quick introduction as people ended up doing different things.  We met them again last year at Drayton Manor.  My elder daughters Becky and Cerys are ages with Jaime's oldest children and so ended up hanging out with them most of that day while we did things with the little people.  The girls enjoyed their time that day.  Jaime is always such a positive person and always offering support if others have any worries.  I always take comfort when Jaime offers advice to me.  Currently Lewis is in hospital recovering from a very nasty infection, I hope he shows signs of recovery quickly.  I'm really sorry that they're having to go through another hospital admission with all that he's been through in his young life.  I know his family will bounce back with positivity.
Lewis being unwell is also a reminder to many families that their battle may never be over.  Many of the children who achieve remission, regressive or stable disease are often left with some complications from the side-effects of treatment.  A child may recover from cancer but be left with many other complications that they have to deal with for the rest of their life.  Some children who have had neuroblastoma can be left paralysed from the tumour and spend the rest of their life in a wheelchair.  Their journey doesn't end with remission, just changes course.  There's not much information out there on the late effects of the treatment, so it's a case of waiting to see what happens to each child.  Isla has been left with a large nodulated liver and enlarge spleen.  We have been told that she has 'liver disease with varisces', and there could be complications in the future.  Currently Isla is well and her liver functions normally, and we're extremely grateful for that.  A future of constant hospital appointments is a sobering reality, and a reminder to make the most of life.
Staying positive is hard.  Since Isla's diagnosis, I do have a bigger appreciation for life.  I've focused a lot of energy into being a stay at home mum, spending lots of quality time with Isla.  I know I missed out on some of the older girls pre-school years being at college then working.  I've wanted to be at home taking care of the girls and the house, making sure I have time for the girls if they need me, rather than sitting doing work when at home, rushing to do all the things a working mother does.  I've also wanted to work part-time for my own sanity, to have adult conversation and because I actually really love my job.  I only work occasionally due to childcare arrangements.  Lately though I've grown really fed up of being a stay at home mum, it's getting tedious, cleaning and cooking etc.  I love the time with Isla, but feel guilty for wanting to get away from a role I embraced after Isla's diagnosis.  I also feel guilty for wanting to desert the thousands of women who make that choice to be a stay at home mum, at a time when women are encouraged to work.  Financially, it absolutely sucks to be a stay at home mum.  Living as a family of five on one wage in the current economic climate is hard.  Most of the money after bills is for food and fuel, nothing left for treats, and there's always an unexpected bill that creeps up, like my recent car bill for almost £600 (suspension and tyres)!  The other day we went shopping as Isla needed new shoes and I had some birthday money.  I did find myself some badly needed shoes and a top in the sales, but felt guilty for buying them, and then felt awful that I spend my time in old worn out clothes and never make the effort to look good.  Shopping is just depressing when you have little money.  It's a reminder that you need new clothes and you neglect yourself. Being a woman in this day and age is hard, you're expected to look good at all times, bring up well-rounded children, have a job, take care of the home etc.  Having the audacity to moan about these things is difficult for me after what we've been through, and is not the morm for me at all, but I guess that's what is happening to me being fed up of staying at home! 
In order to get a job in the future I decided to study for an extra qualification while at home.  I underestimated the focus I would need to complete a course and realised that Isla likes my undivided attention while at home!  With that large box in my head, my concentration and self-discipline at home is not what it once was, I would definately be better studying at a brick building away from home rather than virtually.  Having the money for childcare is a struggle, and can only be done when working and not to allow me days to study.  When hubby is not working he's also busy studying and quality time together for us is few and far between.  Both of us trying to find time to study is not adhering to the lessons learned.  I like our family time, and as children grow and would rather do their own thing with friends, I appreciate watching Isla at this stage in her life.  I admit to only doing the bare minimum for the course I'm studying.  I've often thought about giving up on the course, resenting the time away from other things, but I've paid for it and want to complete it, and if it helps me secure a job then I'll be glad to have done it, even if it's making me miserable currently.  Studying with young children is definately not something I'd recommend.  That's my current battle with my head and heart just now; finding time to study, boredom of being a housewife and the want to secure full time employment while also being able to spend quality time with my family.  That battle is a much easier one that what we were dealing with this time 3 years ago.  The fact that I have this battle makes me feel guilty, as I know we're in a much better place.
Exactly three years ago, Isla was fighting an abcess, septicemia, chylous ascites, infections and close to organ failure, while badly needing chemotherapy to kill the cancer that was all over her body, chemotherapy that could kill her in that current state.  It was definately the worst thing we went through.  Isla did not sleep much, she was uncomfortable, she didn't make a sound or smile like she had done just a month previously.  That period of time sits at the top of the box, as a reminder that we were very close to losing her.  A large team of doctors creating a specific plan in a great hospital is what helped Isla to be well enough to continue with chemotherapy.  Isla was seriously ill for about six weeks.  The night she smiled and made a sound was a moment I'll never forget, sounds of recovery.  Just a nasty cancer to fight!  The fear of  living through that again will always be there.  Keeping it in a box allows us to carry on.  Enjoying life with Isla, having hope for her future are always at the forefront of my mind. Witnessing the amount of sick children in hospital, spending time in intensive care, high dependency, oncology wards, waiting rooms is not something you can seal away in a box.  The memory of that time is what will keep me going this Sunday when I walk with 500 other people along the Speyside Way for Scotlands sick children.  If children can endure repeated visits to hospitals with procedures, treatments, the least I can do is have a little walk and raise some money to make life for them more bearable.  Please consider donating to the kiltwalk.  20% of the money goes to Clic Sargent, a charity close to our hearts.