Friday, 21 March 2014

Dear Sugar

Dear Not Even A Bag of Sugar

When I first met you I was lost and alone in "premmie land". I had a healthy baby at home but I was deeply traumatised by our experiences.

When we first started out, you and I, we were alone. I wrote, you sat there patiently and the odd person would come and say hi or "that resonated with me". And I loved it.

Then things changed. We got nominated for a the MAD Blog Awards, people really started finding us, I found my feet as a blogger and you grew and grew.

You've been there for me in my happy times and darkest times, but most of all you have been there for others, the number of times I have had emails of thanks, messages of support, and received lovely things is quite amazing, and it's because of you, and me.

You see, when I got my job at Bliss I stopped you. I still blog sometimes but I'm not a "blogger" anymore. And I miss it dearly. I tried to start my other blog, but I miss "premmie land" and all who dwell in her.

I want to blog again. I hope you will welcome me back, and guide me. Let me know how to make this fit in with work and not conflict, but I can't cope without you in my life anymore. I miss you too much.

Right now, I am stuck in the this time 5 years ago game and its torture. I am getting help though counselling, reaching out to some amazing people for help and I will get through this and be stronger for it, because that's what I do.

Thank you for always being here for me.

Kylie, mum, regional volunteer coordinator and blogger

Friday, 14 March 2014

Attachment and Parenting your Premature Baby

I had the pleasure of attending an amazing conference today talking about Attachment in Early Years. The most inspiring talk was given by Suzanne Zeedyk. It's really made me think even more about attachment and parenting.

Suzanne is a research scientist fascinated by babies' innate capacity to communicate, something which has always fascinated me. As Suzanne states on her website "babies are born already connected".

I'm not a psychologist and have but the briefest understandings of attachment theory. What I loved today was Suzanne's explanation of attachment. "It's having an internal teddy bear whom you can call on when you need comfort no matter what your age".

My first teddy bear given to me by my grandmother

But what about our babies? The ones that are taken at birth and put in plastic boxes? The ones that in their first hours, days and weeks aren't snuggled up with their mummies and daddies, but subjected to medical procedures and the care of strangers?

Suzanne talked about the work of the Robertsons who in 1952 produced a film "A 2 year old goes to hospital" which highlighted the practice of admitting children into hospital care and allowing their parents to visit only once a week for 2 hours. The film highlighted this practice and it was changed. Now when children are admitted into hospital it is expected their parents will be integral to their care.

It made me think very much about our sick and premature babies, being taken from their parents and care for by strangers. 

What can we do as parents to give babies that first feeling of the "internal teddy bear", to protect them against sabre tooth tigers? And what can we do as parent supporters to help parents find their inner teddy bear and take care of themselves too?

For me I gave baby massage, to counteract the heel pricks and other negative procedures Joseph was experiencing. In the early days this was just his feet. I sang to him and read to him, despite opposition from some of the medical team. I swapped muslins, so he had my scent and I had his.I learnt containment holding.  I fought for kangaroo care. When we finally got home we spent lots of time cuddling, and him being baby worn.

One of the things about today that was very powerful is that it's never too late. Attachment is important throughout one's life not just in the early years. When I was caring for an elderly lady with dementia I would do containment holding when she was frightened. Attachment is relevant regardless of your age.

I think for parents too, that if they've had issues with attachment in their early years that the special care experience can be even harder and more damaging. How can we as concerned parents help others through this experience?

I know for me, that I was so worried Joseph would come out of hospital not knowing who I was, being scared and feeling unattached. When this photo was taken I was deeply traumatised, and my beautiful friend Jen spent time with me helping me to realise that actually, Joseph was mine and I could get better.

I don't think you can say for a moment, on the strength of this photo that Joseph had any issue identifying me as his mummy.

Thursday, 13 March 2014

Fundraising with Beautiful Blue for Harrison's Fund

Supporting charity is something that is very close to my heart. Before Joseph was born I always felt charity was a nice thing to do. Charities, in my opinion then, did work to help enrich communities and provide additional services to people. Since having Joseph my whole view on charity has changed. I know now there are things that would not happen without charities. Specialist support services, research into medical conditions, practical help for families, protection of the environment and a myriad of other things would not happen without the passion and drive of people who establish and work within charities.

I was invited by Beautiful Blue  to look at their new t-shirts which are being sold to help Harrison's Fund . £5 from each shirt sold will go to the fund.

Charities often start from the heart. Families see a need and go for it, putting their hearts and souls into a vision to make things better. Harrison was diagnosed with Duchenne Muscular Dystrophy in January 2011. Harrison's parents established the fund, because what Harrison really needs is a cure, as do all people diagnosed with this condition, and their families and friends. Readers of this blog will know that my best friend Daniel has Duchenne Muscular Dystrophy.

The facts about Duchenne are this. That boys (and there are some girls too) start out healthy and as they grow the dystrophin in their muscles, the protein that makes mucles work begins to deplete. The use of a wheelchair becomes necessary, every muscle is affected including the diaphragm so people with Duchenne Muscular Dystrophy will need assistance with their breathing.

I don't dwell on this, but the simple fact is that Duchenne Muscular Dystrophy takes the lives of these boys, life expectancy is increasing but only because of advances like ventilation. The condition hasn't changed, and I am sure that Daniel would agree, the life with advanced Duchenne, although can be enriching and wonderful, isn't an easy one.

The only treatment available at present are steroids which can help buy some time in terms of walking, but that is the only treatment available. Harrison's Fund exists to raise money for research, because what we need is a cure, or at the very least viable treatments other than just steroids. There is hope and we know more about Duchenne Muscular Dystrophy than ever before, we need more research, more money to ensure that this can happen. 

The t-shirts arebeautiful, the cotton is soft, the prints are so delicate, feathers forming a heart. It doesn't contain a logo or any information about the charity, so it's something you can wear for any occasion, choosing to tell the story of the charity if you wish. The one I was sent would look lovely with dress jeans and heels and a nice jacket, or equally good for the gym, being pure cotton its comfortable to wear and breathes nicely.

There is also a range of jewellery and I intend to treat myself to a bracelet.

With Mother's Day coming up this would be a lovely gift, and it gives twice, to the recipient and also helps Harrison's Fund.