Stranger Danger

Joseph came home yesterday very excited. The local police team had been to the school. Joseph got to go in a police car and got "the talk". Joseph was full of information about what to do if approached by a stranger. Now this is right and important, don't get me wrong. We have had reports in Bury of a man in a car attempting to lure children, in the light of the recent Rochdale grooming trial

stranger danger needs to be on the agenda. However this is where I get nervous. I asked Joseph what he would do if a stranger approached him, and he told me. To be personal body safety is very important, and I think it should be covered from an early age. In the light of the current April Jones trail and the recent conviction of Tia Sharp's killer, it is equally relevant that we need to teach children that it is not just strangers.

 I knew all about stranger danger at 5, but I had no idea that someone you knew could hurt you and do things that were wrong and hurtful, that the tickling games, the hide and seek, the bathtimes were not innocent. They were abuse. The horror doesn't have to be the stranger in the dark car, the horror can be next door. Striking a balance with body safety is so important. Kids need to have a childhood, be happy, be confident, but they need to be safe. When I blogged my own experience back in October in my Jimmy Savile is dead post, I was contacted by Jayneen Sanders who has developed a book and training package called "Some Secrets Should Never Be Kept" I am using this with Joseph and finding it effective. I would strongly recommend this book, it can be hard to know where to start.

But start we must.

International Kangaroo Care Day

International Kangaroo Care Day is such an important day to me. When Joseph was in hospital I read a lot of leaflets written by Bliss, and had access to some great resources and was keen to start kangaroo care early. I just thought it was standard, I never expected to come across opposition.

The consultants were all keen for us to have kangaroo care, but the nursing staff felt we should wait. And wait we did. Until Joseph was 5 weeks old. I have since learnt that there has been a lot more research done in those 4 years and now babies are having kangaroo care much younger and that's amazing.

Kangaroo care is important for babies. It teaches them to regulate their temperature, it comforts them, it stimulates growth.

For parents, it helps restore what was lost at birth. It bridges the gap between premature delivery and taking your baby home. It's beautiful to be reunited with your baby. Time stands still.

Bliss, the charity I work for, are committed to the consistent provision of kangaroo care. Together with Best Beginnings they have put together a pack for units to help them facilitate kangaroo care.

Kangaroo care is a vital part of family centred care, but its increasingly recognised it has substantial clinical benefits for the baby as well.

Did you kangaroo? 

Like a Lamb

I have been around disability my whole life. I was considered disabled for a period of my life when I was a child, and then it was decided I wasn't. Happy days. To me, disability was nothing. I met all sorts of kids, and growing up I always had friends with disabilities. To this end, I now just don't see disability. I see variance. All of us are "disabled" to some extent or another, none of us are perfect.

When Collin Brewer (yes two l's - seriously) first hit the news in February with his mindboggling and archaic views, I was stunned that in the 21st century people could still think like that about children with disabilities, that some of them shouldn't be here.

Imagine my shock when Hayley from Downssideup brought my attention to his latest comments which you can read here. He likens a disabled baby to a deformed lamb. You put down deformed lambs don't you?

There are so many thoughts in my head but here are three.

When Joseph was born nobody knew what the outcome would be. We were given a range of possible scenarios. Would Collin Brewer have likened Joseph to a deformed lamb? Withdrawn treatment?

 

My husband was born with arthrogryposis multiplex congenita. His hands, feet and knees all badly affected. He had years of surgery and now faces more. He also works, pays tax, and is a great father and husband most of the time.

This is my best friend Daniel, you can read his thoughts on Mr Brewer here. Daniel is an insightful, intelligent, hilarious person. Everyone who meets Daniel is touched by his kindness and thoughtfulness. He has a degree, he contributes where he can, by helping friends, furthering causes and generally just being amazing. Who cares that he needs government support? I can't think of many people I would rather my taxation going to. This is what a caring society is all about, surely?

Who decides who is worth saving and who isn't? Who is prepared to make the call of which baby is "worth" saving and which ones are not? Who is qualified to make that call?

No one.

What would my life be without these three special people Mr Brewer? Tell me that?

Mother's Day

I am sure I have broken a cardinal sin of blogging as I post this picture quite often. But I don't care.

Today is Mother's Day for most of the world...... I sent tulips to my mother, I have them growing in the backyard, but since she is not around the corner, sadly, I had to order some. Fortuitously I found just the same colour as the favourite ones out the back, and even more so, they were called Kylie, how wonderful!

Today I have been thinking a lot about Live Aid. Random I know but I was listening to music on YouTube yesterday and came across Oz for Africa, the Australian leg of Live Aid all those years ago.

No child of the 80's would have been untouched by the images from Africa, mothers crying for their children who were going to die, because of malnutrition. We all placed our faith in Geldof, Ure, Bono et al. We really thought music might just change the world.

But here we are knocking on the door of 30 years since Live Aid, and I wonder, is life any brighter for a mother in Africa than it was in 1985? Have we made enough difference?

And I am sure in many ways we have done amazing things since then. We have come a lot further in our thinking in terms of charity and how we help developing nations. We have better programmes, more responsive solutions, and have charities and campaigning organisations who really care.

But I wonder what I as a mother can do? I want to do more. It bothers me that 500 000 babies a year could be saved just by kangaroo care alone. It's free. But on speaking to a mother from Venezuela on Twitter, it's clear that there are huge cultural changes and acceptance of research that needs to take place. This mother had no kangaroo care at all. Her baby is fine thankfully, but we need to take this message out, mother to mother.

One thing hasn't changed. In 1985 I wanted to get out there and change the world.

And in 2013 I still do.

Baby Massage in the NICU - Trust Your Instincts

When I was a carer I had a young girl I looked after, and she had very complex issues. It was suggested by her GP and her social worker that we try massage. I had no idea where to start. She wasn't a baby, she was 7, but I bought a book on baby massage and read it cover to cover. I used some of the techniques and they worked really well. By the time I left her after a year she had completely changed, she responded to her name, had learnt to say a few words, and was much more relaxed and happy.

In that book was a section on premature babies, and I had read that too. When Joseph was born, I recalled all of it, and I chose to massage his feet. Some of the nurses and doctors queried it, saying he was too young, but it just felt right. I strongly believed I could read his cues and would know when to stop.

With Joseph's 4th birthday just gone I have been looking through old videos and photos and found this. Joseph had been really poorly and had recovered somewhat, but was still clearly very small and fragile. However you can see that when I massaged his foot, he loved it and responded to it. His lead consultant believed in me and wrote me as a prescription! He said I would meet opposition at times, and that I knew what I was doing and to never ever lose sight of my mothers instinct. It was this doctor that made me confident in my parenting.

If you have a baby on the NICU, trust yourself. It can be hard especially if you are being challenged, but stay firm. There is increasing evidence based research on all sorts of family centred care practices:- massage, music, singing, kangaroo care etc. Don't be afraid to look it up, to quote it, to politely challenge back.

At 4 Joseph still gives me his feet for a massage, especially if he's tired or scared. And he still goes for kangaroo cuddles too, though now there are arms and limbs everywhere!

And The Decision is Final and a Request

Thank you for all the comments on my pre eclampsia post yesterday which I received privately. Its lovely people care and took the time to message me.

I wanted to clarify something as I have had a lot of questions and comments. No one knows what will happen in any pregnancy. Particularly in regards to pre eclampsia, it's a very weird condition, it shapeshifts and alters from woman to woman, from pregnancy to pregnancy.

No one knows if I will get it again if I have another baby. However what consultants can do is a risk assessment. I have been given a figure of around 80% of recurrence, and my consultant feels I would have to deliver at around 30 weeks.

I am not having another premature baby. Yes, I am eternally grateful to the NHS, and to all the support I have received. But I think they have done quite enough for us in the baby department.

I am not mentally tough enough. I know everyone thinks I am strong but I am not. I still cry over our time in neonatal. I go back into units now with work and look at parents sitting by incubator sides and my heart just goes out to them. I could never go throught that again. Why expose our family to that?

All the monitoring in the world cannot stop preterm birth as a result of pre eclampsia. I would be put on aspirin as soon as I fell pregnant and that might help. Or it may not. I would get regular monitoring this is true, but it can't stop the inevitable.

Everyone has to make their own decision based on their acceptance of risk and ours is to not have any more children and to be quite frank, its not up for discussion. Decision made.

If I turn up anywhere pregnant I will have had an affair, as my husband has had the snip.

No more babies.

I am incredibly lucky to have a perfect little boy, I have more than what a lot of people have. Yes I would have loved a larger family and a sibling or two for Joseph, but it's not to be.

And I am happy. 

Now my request. The very lovely people at The Princess and The Frock have designed a dress for Matilda Mae with 20% of the profits going to Matilda's Precious Star Fund

If you have a girl in your life, please consider buying this really beautiful dress in memory of Matilda Mae.

Dear Pre eclampsia

Dear Pre eclampsia,

I hate you. You robbed me of my pregnancy. You made me so sick that there were concerns I could die. You made them cut my baby out and put him in a box. He was very sick too.

You have taken precious babies away from friends of mine. The lovely Danielle who blogs here about her beautiful boy R and Dawn who blogs at the Moiderer to name just two.

You cause doctors, midwives, nurses and researchers no end of trouble, without your shape shifting sneaky ways. You can come in at any time during pregnancy. You can pretend to be something else. You can come slowly or suddenly.

You can strike in first pregnancies and never again. You can stay away in first pregnancies then sneak up in subsequent ones.

Because of you, we have had been advised to have no more babies. You have taken my dreams of having more babies away from me. Never again will I be pregnant. And that's down to you. I hope you are happy. 

You cannot be cured, except by taking babies away from their mothers.

You are an evil, nasty, malicious horrible condition.

I cannot tell you how much I hate you. I am angry. Not for myself, because I have won. But I am angry that women die every year due to you. And many, many babies. It shouldn't be that way.

You strike fat women, and thin and everyone in between. Healthy women, unhealthy women. You are indiscriminate.

One day there will be tests, treatments, and maybe even a cure. One day. And I hope to live to see it.

Until then, I will be there, watching you, looking out for other women and their babies.

I hate you pre eclampsia.