We are currently entering week 3 of Daisy’s stay at Great Ormond Street hospital. On the 14th October she had an 8 hour surgery to her bladder and abdomen aimed at sorting some ongoing problems and creating some solutions which will improve her quality of life. Thanks to the wonderful, skilled team looking after her the surgery went really well and she is recovering slowly but surely, the ongoing issue, as always, being the management of her pain . Of course Daisy loves to move the goal posts every now and then, this admission she developed an extreme sensitivity to intravenous morphine which means we really can’t use it.
It’s been so difficult dividing myself between here and home, making sure Andy is eating OK, rushing to meet him at outpatients appointments. And while our other three children are now teenagers, in many ways they need me now more than ever to be a listening ear and to help source the lost travel card from a distance (I have special skills in this department).
Sometimes the stress of it all can make the children snappy and unco-operative, it’s all down to circumstances, I learned years ago never to take the remarks personally, you learn this very early on when you parent a child with autism after all.
Our family life may be more complicated than most but the reality of family life is that often you feel like you are dividing yourself in two (or in my case three or four), that no-one notices what you do and sometimes your children just don’t appreciate how you have moved heaven and earth for them. It’s parenting, in our case, it’s extreme parenting, but it is what it is. We have ensured that in all the years of looking after Daisy and since Andy was diagnosed with cancer that we wouldn’t make a drama out of a crisis. We approach our lives with a realistic attitude, a solid line in trench humour and a very practical approach to making things work which means that sometimes from Daisy’s hospital bedside I will arrange takeaway pizzas to be delivered home so that the very hangry teens who are refusing to explore the range of ingredients available in the larder for meals can have a quick and easy meal. Sometimes you just have to let standards slip!
On Saturday I was sent a piece from the Guardian that really made my hackles rise. It was an anonymous letter by a mum to her 10 year old son “who needed to be told a few home truths”. You can read the letter here http://www.theguardian.com/lifeandstyle/2015/oct/24/a-letter-to-my-10-year-old-son-who-needs-to-hear-a-few-home-truths
But the summary is that she needed him to know why he should respect her and then went on to list all the things she did for him including losing her bikini figure after carrying him for 42 weeks, helping him prepare for exams (he’s 10 for goodness sake, what exams is he taking, his GCSES?), freezing on the sidelines at football every weekend, washing his trousers after he peed in them when she was potty training…..the list goes on, all with the disclaimer that she did all these things for him because she loves him. Yeah right.
Our children didn’t ask to be born, they didn’t ask to be thrown into the world we have found ourselves in – as parents we all have choices and our children don’t need every living moment of their day to be timetabled to the nth degree for us to get our “good parents” badge and our children certainly don't need to be told of the sacrifices you have made to get that badge for them. Similarly they will not suffer if they are allowed to binge watch tv sometimes because you are knackered, or eat inappropriate food or not enrol at Little Einsteins Saturday Music and Meditation Academy or whatever the latest craze is these days for 5 year olds.
I did not plan this childhood for my children, but I’m doing the best I can. They have grown up into sensible, practical, caring young people and I have not micromanaged them to do this. I have allowed them to grow and develop while giving them boundaries and guidelines but the bottom line is that I don’t expect thanks or acknowledgement for any of it, it’s parenting. Parenting is the toughest job in the world and as parents our job is to analyse what have we done to have caused any behaviours, not blame our children for being ungrateful.
While I don’t ask them to be grateful for any sacrifices I may have made they do appreciate what they have, they don’t say it very often but the other day when Jules said “I don’t know what we would do without you mum” that meant more to me than anything in the world. Anyway, sacrifice is the wrong word, we all have choices – even with Daisy, we could have chosen to follow a different path, nothing we have done for our children has been a sacrifice, it’s been a choice.
So back to the anonymous mum who felt that her 10 year old son should know some home truths and feel grateful for everything she had done for him. Just a few home truths for you:-
Have you ever thought about how lucky you are to even be able to have children?
To have carried your child to full term?
That he can eat and walk and talk and go to school , read, write, play sport….
Do you get my gist? Before criticising your child for answering you back because he didn’t want to tidy his room just think about what you have, not what you don’t have. If you want your child to be eternally grateful for everything you have done for them then maybe you should have got a dog, in our house he's the only one who doesn't answer back and gives me unconditional love.
And the messy room thing? Maybe it’s his only bit of control in that controlled world you have created for him? (well that’s how I justify the tips that pass as bedrooms that my teenagers have)