Creatures great and small

20120730-132647.jpgIf 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!

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When the carer is ill

Its a bit difficult to call in sick when you are a carer. You have to grit your teeth and get on with it. Well so I thought.

Last weekend I thought I had a throat infection but when I saw the doctor on Monday I was told it looked like bad tonsillitis.

But as time went on and despite being on penicillin, it didn’t improve. I was unable to eat and could barely drink water. As my throat was so swollen my saliva had nowhere to go so I was constantly wiping my mouth (or dribbling).

I’m usually a huge bit of a chatterbox so felt very strange that I couldn’t speak. I did quickly discover that my dear husband is useless at charades so I was constantly having to write notes. I even had to email my Dad and ask him to ring up the hospital and cancel our hydrotherapy session today as I wouldn’t have been able to make myself understood. Oh and sleeping? You can forget that.

I had been able to the basic tasks as Sam’s carer because I forced myself to. Despite wondering around like a zombie. He still got his feeds and drugs on time and nappies done. But it was hard, really hard and very exhausting. What I did find a scary thought if what if there was an emergency? I needed an ambulance? I’d have to run to a neighbour, give them a note or manically text someone.

But I didn’t know what to do. None of our friends or the Grandparents feel they can look after Samuel and with Auntie C busy I just had to get on with it. Sam’s Dad is a teacher and I didn’t want to ask him to take time off.

But today, after texting Auntie C to ask her to make me a doctors appointment, it all changed. My doctor suspected I have Quinsy, an abscess around the tonsils. She admitted me to hospital and told me she was seriously concerned about me and uttered the kind words ‘You look horrendous’. So I asked her to phone my husband who came home at once.

And here I am. They are trying to rehydrate me and have given me steroids to reduce the swelling. Later or tomorrow they will look again at the abscess and may drain it, or, it may just pop!

And Samuel? He is very happy snoozing away with his Daddy with not a care in the world!

But this experience has shown how difficult it is not being able to call people in to look after Samuel while I wallow in my sick bed. With Samuel’s epilepsy better thanks to the new diet, I’m hopeful that maybe his Grandparents may start to feel they can do more. But they have to get over their own fears like we had to. If I can learn how to put feeds through a gastrostomy button then anyone can!

I didn’t think I would ever be able to call in sick in this job but today I had no choice. I do feel bad about it but Sam needs me well. I just hope he’s forgiving and goes easy on me in my back to work interview!

UPDATE: Thank you for all your kindness while I was poorly. I’m much better. And Samuel? Auntie C and the wonderful carers and nurses at Julia’s House stepped in and saved the day(s)!

Dreams

This is my second attempt at writing this blog post. I found what I was going to say too hard to write. It was about a dream I’d had. The dream was about Samuel. A fine and healthy Samuel. No ARX. No epilepsy. Just a fine and healthy 19 month old boy doing normal 19 month old things. That first post was going to tell you in detail about the dream. That I went into his room in the morning and there he was smiling at me, asking to be picked up. I watched him eat and enjoy his breakfast, even ask for me. We went to the park and played on the swings. He said Mummy.

It was one of those blog posts that squeezes your heart with every word. But what was the point of me repeating to myself every single acute detail of that dream? It wasn’t true. It wasn’t real. I will never wake up and find this rollercoaster has been a dream. This is real.

But it made me think about what I wouldn’t have if it was a dream.

  • We wouldn’t have the bond we have with Auntie C.
  • I’d be back at work. I wouldn’t get to see my precious boy every single day.
  • I wouldn’t have the friendship I do with the amazing mums I met in NICU.
  • I wouldn’t know Julia’s House and just what a fantastic place it is. I wouldn’t appreciate just how full of love it is and I wouldn’t have met all the lovely carers and nurses.
  • However much I would have loved Samuel, I probably wouldn’t have appreciated him the way I do. I may not have realised just how precious life is and how vulnerable it is.
  • Samuel has brought out peoples true colours. Although they’ve always been wonderful, my existing friendships, particularly with Sam’s Godmother T, wouldn’t be as they are now. I’ve leant on T. I’ve needed her and she’s delivered. With bells on.
  • I wouldn’t have made the lovely friendships I’ve got with other local mums of children with disabilities, who are extraordianary strong and just simply brilliant women.
  • I wouldn’t be person I am now. Samuel has brought out the best in me. I am patient. I am kind. I am compassionate. I can see beyond the condition, the disability, the tubes, machines and scars and see the person that is there.
  • If I hadn’t found myself in this new world, I may never have opened my twitter account. I may never have started a blog. You wouldn’t know me and Samuel and I wouldn’t know all the absolutely amazing people who I’ve met through twitter and blogs.

Don’t get me wrong, of course I’m not denying that I would not exchange everything I own, every limb of mine, for a miracle. But that isn’t going to happen. So why dwell on the what could have been as it will never be? Just enjoy the here and now and realise how lucky we all are.

Rollercoaster Ride

Samuel spent eight weeks in NICU. Eight long weeks. I can’t begin to tell you of the different emotions we felt during that time. Excitement, joy and love and pride at being parents to this beautiful little boy. Fear, pure and utter fear that we may never take him home. We may lose him. Despair. But also we found huge comfort in NICU and the support we received.

It is so difficult to put into words how wonderful the doctors and nurses were. We learned so much from the nurses, we even learned about survival. But all those nurses and doctors were just spectacular. The nurses would regularly pick us up off the floor, dust us down and gave us so much support and comfort we could carry on to see another day.

Our wonderful relationship with Auntie C blossomed while we were there which is something we will always treasure.

We also formed some great friendships with other parents and one particular family has a very special place in our hearts. Leela and Anthony are parents to twins Willow and Stanley who were born 14 weeks early. I’m proud to tell you that Leela and Stanley are raising money for NICU along with the family of Oliver who is also a graduate of NICU. Willow and Stanley and their friend, Oliver, spent a combined 385 days fighting for their little lives in NICU at Poole Hospital. Their journeys were full of ups and downs and quite a rollercoaster ride. For more of an insight into what these babies went through, check out The Early Adventures of Willow and Stanley.

In the summer of 2012, a group of close family and friends will be cycling one mile for each day these three babies endured in hospital. They will start at Windermere in the Lake District on 1 August, finishing (hopefully) 4 days and 385 miles later at Poole Hospital. If you were able to give just a few pounds, your money would go towards buying much-needed equipment to help babies like Samuel, Oliver, Willow and Stanley. You can find out more about their cycle ride and sponsoring them at www.justgiving.com/RollercoasterRide

Even if you don’t want to sponsor the team at the moment, please please watch this beautiful video about Samuel’s very special friends Willow and Stanley. Thank you. 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.