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

Meet the gang

Samuel likes to hang out with some special friends at home.

Edgar and Max hang out with Sam in his nest downstairs. Edgar was given to him by his Auntie T and Max was given to Sam by Auntie C when he was in hospital having his gastrostomy to keep him company.

Grannie Bear was knitted for Sam by, well yes you’ve guessed it, his Grannie and she looked after him when he was in his cot in NICU. Grannie Bear stays up in his cot (also known as The Cottage) and looks after it for when he comes up at bedtime.

Sam and The Gang.The coolest gang around.

Sam with his boys: Edgar (the elephant) and Max (the dog)

Sam with Grannie Bear (in NICU)

On days like these…

Today has been a bit of a frustrating day. It started with me complaining to the manager of our doctors surgery for their continued incompetence with dealing with the boy’s prescriptions. If it wasn’t for the adjacent chemist who have simply been amazing we’d have found ourselves in trouble a number of times.

Because of the strict use-by dates on his medicines we can’t order them too early or we will end up wasting a lot of the medicine to then go on the new bottle. But I always give us and the surgery plenty of time to process the request. But more often than not they make a mistake. They either lose the prescription request (“sorry it’s been left in the drawer” or “sorry it had fallen through the tray and we hadn’t noticed” or just “we don’t know what’s happened to it”), or they change what I’ve requested and put through a request for a medicine that Sam no longer has – thankfully the chemist queried it as he hadn’t had the medicine in quite a while. A number of times we’ve been told that the form was in the pile about to be taken over to the chemist but then I speak to them next day and it hasn’t even been signed off by the doctor! Aaaarrghh!

Anyway, I called the manager, found myself angry one minute then quite emotional, particularly as I said that these weren’t just vitamins, these medicines stop him having a seizure that could kill him.

Then I had a really annoying appointment at the hospital. It wasn’t to do with Sam’s head or seizures in fact it was to do with the other end. When he had his gastrostomy operation they dropped one of his testes but decided not to do the other. They are now talking about doing the other one. I’m not keen. He wees just fine and I really aren’t keen on him having an operation at the moment (especially as we’ve just got over a series of bugs) and will it really make a difference?

The surgeon we met today hadn’t met us before. Had probably only seen Sam’s notes briefly before our appointment. He didn’t understand Sam’s condition. I had to explain. I had to explain Sam’s life expectancy and whether he is expected to reach his teenage years. Bearing in mind 50% of children with Sam’s condition don’t reach one year old, the answer is unlikely. I had to go over this stuff with him more than once. I asked him to go back and discuss this with Samuel’s Neurologist and then come back to me as they are the medical experts. This chaps colleague (who did the previous surgery on Samuel but had been called away today) actually shares an office with Samuel’s Neurologist so the phrase ‘get a room and discuss’ seems a bit daft. Anyway, I was pretty hacked off.

(By the way the surgeon told me right at the end of the appointment that there is a slight risk that if the other testical isn’t dropped into place then it could become cancerous. I’ll just add that to the list of stuff to worry about then.)

But then afterwards I had a coffee with my friend T or Auntie T as I should call her as she is Sam’s other Godmother. On days like these you need a friend like her. I’ve been banging on recently about needing people in ‘our world’ to talk to but I already have a great friend in T. Yes her son J is fine, developing so quickly he’s going to be running about before long and I may be the only person she knows with a disabled/special needs child, but you know, I think she gets it. When we had Sam’s diagnosis and prognosis I rang her to tell her. We both cried on the phone. She demanded that she had to come over and see us and have a cuddle with Sam. She’s always been there and I don’t think I’ve ever really appreciated that. Although she has her little man now and he is quite a handful, it is so obvious how much she loves Sam and relishes being his Godmother.

So although I’ve felt really quite pissed off today I have learned something. Sometimes what you are looking for can be just under your nose. Auntie C and Auntie T, friends for life. x