Creatures great and small

If you have read about Auntie C you will know that along with being a neonatal nurse, helping us with looking after Samuel (and she has recently started helping a family with a child with Cerebral Palsy), she also takes in and rehabilitates little creatures. Wild rabbits, birds, squirrels and (what I think are her favourite) hedgehogs are brought to Auntie C when they have been found abandoned, injured or brought in by a cat or dog.

Recently, Auntie C took in two tiny baby hedgehogs that had been found at a local army camp. The guy who found them unfortunately scared off their Mum and the babies are too little to fend for themselves.

As Auntie C had a busy week at work, we offered to help out with feeds. I will admit, I’ve got attached to them and named them Bert and Ernie (Bert is the bigger one). I shouldn’t get attached as things aren’t looking good for these two. Bert doesn’t seem to want to feed very much now and they really need to fatten up! But if anyone can help them, Auntie C can.

Here is a little video of one of the hedgehogs having a snack.

By the way, to give you an idea of Auntie C’s dedication to helping little creatures, she is currently looking after 17 hedgehogs and one little bird!

Our nest

I love our home. We’ve lived here for five years now and after a dodgy couple of years of living next door to the neighbours from hell (which saw us having to appear in Magistrate Court to act as witness for their landlord who was desperately trying to evict them), we’ve really fallen in love with our little nest.

We also live two doors down from our Guardian Angel Auntie C.

Our house is a small three-bedroom end of terrace. We have a sweet little garden that we are desperately trying to make into something that we can really enjoy and take Samuel out into for picnics, swishing about in the paddling pool, cuddles and sensory play. I also need to figure out how we can squeeze in one of those fabulous basket nest swings.

Although it has been a lovely home I’ve started to think about the future. For a long time I’ve avoided thinking of the future – there was a time that we didn’t think we’d get Sam home from NICU. What about his first birthday? Second Christmas? But he made it. So I’m starting to allow myself to think that maybe we will be blessed for quite a while, despite his prognosis.

Samuel is getting a big boy now. A big and long boy. I can still carry him up and down the stairs but I must admit it’s a relief when I put him down – I’m not the strongest chick on the block and it is quite awkward as he cannot support his head or neck and when you carry him, he doesn’t cooperate or hold on. Our staircase is quite narrow and it’s tricky when he has a seizure while we are going up or down the stairs.

He is only 19 months (yes world, my boy has reached 19 months!) but I’ve started to think about whether we need to make some changes to the house to make everything easier and safer for us all, but especially Samuel. Being an end of terrace, I’ve been wondering about whether we can extend out the side. My dream would be to have a double-decker extension but have a feeling that may be hugely out of our budget! But I would love to make his room into an amazing sensory room.

I want to make our house beautiful. I want it to feel like a perfect family home for all of us. We have started to talk more about extending our family and are seriously looking at the possibility at our options for having more. So it would be amazing for us to make our home into something amazing for other children who join our family.

We’ll get there. Somehow. But for all the space or beautiful design this house may lack, it’s full to the brim of love.

(If there are any genies reading this and in the mood to grant some wishes, we could really do with a new kitchen too! x)

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

Easter bunny

Last year (2011) we marked Samuel’s first Easter by dressing him up as a cute Easter bunny, complete with a carrot rattle. Samuel wasn’t too bothered about his first Easter or indeed being dressed up, he slept through most of it. Outfit courtesy of Auntie C.

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

Max the poo-dle

I wasn’t sure at first whether I was going to post this but then I thought what the heck you are all parents so can’t be put off by a bit of poo talk.

The story begins over at Auntie C‘s house. I decided to pop over there with Sam for a few minutes as we hadn’t seen her for a while and I wanted to drop off a copy of our new spare key. As usual I hand Sam over to Auntie C for cuddles and she settles into the chair with him. Auntie C has a lovely dog called Max, he’s a white (remember that he’s white) American cocker spaniel and extremely cute and really nice natured and he had come into the room and settled down at Auntie C’s feet.

Then it happened. It was like an air raid siren. The noise from my son’s bottom was nothing like we’d ever heard before but there was no time, Auntie C immediately lifted him up and said that he had leaked on her. But no, worse was still to come. Not only had Samuel’s poo broken out of his clothes, leaked onto Auntie C but also gone onto her (new) wooden floor but managed to splatter Max in the process! The poor dog had poo all over his head.

I of course hadn’t brought Sam’s changing bag with me, typically, as I was only expecting to be five minutes and thought that I’d be safe for a little while before the next nappy. So Auntie C’s daughter rushed into the kitchen and got me a large plastic bag to wrap around my son’s lower half to avoid it getting all over me while I carried him back home.

The picture I will never forget is as I walked out their front door and looked back, apologising for the millionth time, Auntie C was there with a wet sponge in hand cleaning my son’s poo off her (white) dogs face.

My son pooed on a dog. Fact.

My treasures

Last year for my birthday and Christmas, Auntie C bought me two things which are very precious to me.

One is a necklace that has Samuel’s footprint (yes, a mini copy of his real footprint) and his name. The other item is his picture lasered into crystal.

Beautiful I think you would agree.

Respite to the rescue (part 1)

On Friday morning we will have our assessment for respite. At last.

As, rather disappointingly, none of Sam’s grandparents are confident to look after him on their own we only have Auntie C to do the odd bit of a babysitting so think that we really should get respite organised.

Part of why it has taken us so long to get here is totally our fault. You see when we came home from NICU, the Community Nurses (who I’ve not mentioned yet but are very lovely although stretched very thinly) immediately started talking to us about respite and that we should get in touch with our local hospice about it. But we had only just come home with our boy and didn’t want to leave him, didn’t want to share him. It was very bad timing and far too early to nag us about it.

So we ignored it. But then a few months before Christmas I went to an open day at the hospice and fell in love with it. The lady who showed me around (‘Play Co-ordinator’ I think was her job title – what a great sounding job!) was so nice, so kind and really understood where I was coming from. After all she had probably heard my story a million times. The place doesn’t feel like a hospice at all. You’d almost expect it to be very clinical and have something of a sad atmosphere, but not at all. It feels like a children centre, just with the odd oxygen cylinder around and a nurses station! It is bright, colourful and gave me a good, positive, warm feeling.

I’m not really sure yet how we will use respite, but I’m so looking forward to being part of the hospice community. To meet other families similar to us and a place where we can feel ‘normal’ – the only place I expect we can feel normal.

I’m a bit nervous about it but on the other hand think it will be lovely to extend Sam’s team and for him to have new people to cuddle and to flutter is amazing eyelashes at!

I’ll let you know how our assessment goes and when we’ve finally got our foot in the door.

 

Auntie C

I really should tell you about our guardian angel. Seriously, I believe that we have a guardian angel, but she doesn’t have wings (well, none that I’ve seen), instead she wears a nurses uniform and looks after hedgehogs.

Let me explain.

Auntie C lives two houses up from us and we did know her before we had Samuel but only really just to say hello to. We got to know her husband much better as we were trying to sort out some problems we were having with the neighbour inbetween us.

But then Samuel was born and the day after he came into our lives, he was admitted to the Neonatal Intensive Care Unit where Auntie C just so happens to work. A few days into our stay (I’d not seen her working there at this point) we came into the unit, went over to Sam’s incubator and there waiting for us was an absolutely beautiful photo of Sam, his ink footprint and a gift bag full of baby goodies. That was the first of a thousand wonderful things Auntie C has done for us.

She has become so involved in our lives, such an integral part of our family that we asked her to become one of Samuel’s Godmothers when we had him Christened shortly after we came home from hospital.

Auntie C has been a nurse for over 25 years and in that time she has seen so much, seen just how damn cruel nature can be, so when I tell her the worst, the hard details of what the docs have said she doesn’t flinch. But I can see it in her eyes, the saddness, not just for Samuel or us, but for her as she absolutely adores him.

Until we start having respite with our local hospice, Auntie C is our only babysitter. Although our families continue to be supportive to us, emotionally (particularly my mother who has been terrific) and financially, they don’t feel confident in looking after Sam on their own and neither do any of our friends. So it is Auntie C who comes to the rescue!

But Auntie C’s wonderfulness doesn’t just stop there. When the premature babies in the unit reach 100 days, Auntie C (out of her own money & in her own time) bakes the parents a yummy cake to celebrate. When the premmies reach 1 kilo she bakes the parents a cake. When the babies have their first bath in the unit she gives the parents a tiny rubber duck for their memory box. When it’s Christmas, Easter, Mothers Day or Fathers Day she takes a photo of the baby and puts it in a card for the parents.

And there is more. She also takes in baby hedgehogs, injured birds, squirrels, ducks (yes ducks) and nurses them back to health before releasing them.

She is always on hand whenever we need some advice. Or just some moral support. When Sam’s Dad and I recently caught a bad tummy bug from when Sam was in hospital, she went to the chemist for us and brought round a gallon of lucazode while we were laid low.

She always buys Samuel lovely presents (and us!) and fancy dress costumes – his first Christmas while in NICU she dressed him as Christmas pudding, a bunny (with carrot) at Easter, a pumpkin for Halloween and this Christmas, well, he was a snowman.

No present, no card,  no words can tell her what she means to us. We could never in a million years repay her. But I know she loves her cuddles with Samuel and has spent many hours here on our sofa giving him a good squeeze.

To us she is our guardian angel and we will treasure her forever. x