Quality not quantity

I’ve blogged before about friends (Days like these) and what they mean to me, in particular my online friends (I get by a little bit with help of my (cyber) friends).

When a friend is in trouble, don’t annoy him by asking if there is anything you can do. Think up something appropriate and do it.
– Edgar Watson Howe

I lost friends when I had Samuel. Some people backed off completely as soon as they heard there were problems. They would probably say they didn’t want to intrude. They wanted to give us space. I’m the age where a lot of my friends are having children. I think some of them backed off (or just disappeared) because they didn’t really want to know about what could go wrong, what could happen. Perhaps they felt guilty that their child was fine and healthy. Maybe they thought we’d be miserable and rain on their ‘new baby’ parade.

I backed off too. Having Samuel and finding ourselves in our situation, made me look at people differently. Casual acquaintances or people I just gossiped with, I didn’t need them or have time for them anymore. It made me refocus on the people who mattered. In the early days I found many relationships, friendships difficult, hard work. Having to explain everything to them so they understand about Samuel’s condition and abilities (or lack of), seeing their apologetic, sympathetic looks. Being rubbed on the shoulder and being told rather patrionisingly, with a head tilted to one side, that we were doing really well and were both very brave, by people who would then go back to their neat little worlds. I know they meant well, but it did my head in.

I felt at first that having Samuel had shrunk my world. My world had got dramatically smaller. How wrong I was.

But having Samuel opened my eyes and my heart to those I needed in my life. Those people who are pure gems that you just need to have around.

Friends like Sam’s Auntie T, JJ, Gem and Kate were there before and they are here still with bells on. When Sam was in NICU they no doubt had absolutely no idea what to do or say, but they put themselves forward. They’d email and text and offer to get us shopping, to come and visit in NICU, to just be there for us. I know damn well that I could send out an SOS to each of them and they’d get here as fast as they can. I’ve even got a former work friend of mine who is much younger than me and a bit of a party animal, but she still finds the time to regularly check in with me to see I’m ok. Likewise with an old school friend who has had her own heartache to deal with, but she’s always there you know, there in the background.

And of course there is Auntie C. She is our guardian angel. We knew her before we had Samuel of course (to those who don’t know, she is our neighbour and was one of Sam’s NICU nurses) but not the way we know her now. She is a crucial person in our lives and means means the world to us.

And apart from our bond with Auntie C, our time in NICU brought us together with three sets of families who are so very dear to me. Each of their little chimps had various problems. They are all miracles in their own way. And their mum’s adore Samuel. They hold him so close and tightly like he was one of theirs. They keep up-to-date with how he is doing and treat him like he is a real little VIP.

And then my mum-friends I’ve met through Julia’s House. I’ve made friends with three fabulous, intelligent and strong women who really do ‘get it’. Nothing I can say will particularly shock them and they certainly wont sit there patting me on the shoulder, telling me I’m doing really well and so brave. They treat me like a normal parent with just extra challenges like them. Their children are much older than Samuel and I’ve been able to learn so much from them already. It’s not quite like the girls from Sex and The City when we get together. We talk about wheelchairs and medicines, but we do have a great laugh together too.

When you die, if you’ve got five real friends, then you’ve had a great life.

It is because of Samuel I have these amazing people in my life. Even my friendships that I had before I believe have been strengthened because of him. Samuel has opened the door to a whole new world for us and do you know what? It’s big, warm and full of people with golden hearts (and a great sense of humour). Thank you Samuel. x

I get by with a little help from my (cyber) friends

I’ve been quite surprised by how helpful and supportive I’ve found twitter and reading other people’s blogs. We’ve been plodding along in our little bubble just the three of us, only occassionally letting people in. We do have very supportive and kind friends and family, but we are so aware that they don’t really get it, as much as they really do try, they really don’t get what it is like to be in our world.

But I don’t think badly of them. Before I had Samuel I had no experience of this special world, or indeed if I had been a mother to what the world calls a ‘normal’ child then I wouldn’t truly understand what people in our shoes are going through, what they are experiencing, I mean how can you?

But I have made friends who are in our world. They really do understand what it is like in our funny little world and our thoughts and fears.

I probably shouldn’t single people out, but I really want you to know about them and to read their blogs and to find out about their story.

The first is the family of Liam the Lion. A couragous boy who has proven to be a brave little soldier in his three years. I can’t remember how I came across his dad’s blog Pressure Support, but I am so glad I did. Liam’s parents have really inspired me, have shown me that the world is still bright, the sun still shines and there is so much to enjoy regardless of what my boy can do. Regardless of his condition. I read Liam’s dad’s blog posts and I can feel so much love, so much love and pride for his boy. Liam’s dad also writes beautifully. Liam also wears really cool t-shirts.

My other new friend is H’s mum Little Mama said. She is me. She is still finding her way, trying to figure out what on earth this funny world is about. She worries about the same things as me. She’s suddenly found herself doing this job she never expected to be doing. But boy, she’s superb. What she does for both her boys, all her love, all the bloody hard work she puts in, I so admire her.

I hope that I can help people through twitter and through this blog to realise that actually our funny little world is much bigger than many people realise. And there is no reason to ever feel alone.