Hopes and wishes for 2012 – part 2

I wrote a post at the start of the year about my hopes and wishes for 2012.  A few things we’ve achieved, some things we are still working on:

In no particular order:

  • Samuel’s seizures improve! I think we’ve come a long way and I’m proud of how strong our boy is. For one good spell he went 60 days without Midazolam. Amazing.
  • Sam doesn’t catch many (or any if that is possible) bugs and has a very healthy year. I think we’ve been quite lucky this year, although it did break my heart in the Autumn when Samuel had a small chest infection, but as everyone kept telling me, bearing in mind his disabilities, for him to have his first one at almost two years old is extremely good!
  • Sam makes some progress development wise. My real dream would be that this year Sam starts to make eye contact and smiles. The only time we get to see him smile is when he has a seizure (and it would be a cracking smile if it wasn’t for the circumstances), so to have him look into our eyes and smile would be amazing. No development progress, but he’s achieved so much more hasn’t he?
  • We become part of the hospice community and I meet other parents in our world. I think having the hospice involved in our lives will be fantastic, not only for Samuel but for us too. I really can’t wait. Well, if you’ve been reading this blog for a while now you will know that I have fallen head over heels in love with Julia’s House. I’ve made some fantastic mum friends and I really feel that the hospice have become part of the family.
  • Samuel starts the ketogenic diet and we can see a positive difference. We started the ketogenic diet in April and it worked! We had a blissful time initially but then he started to lose weight and we had a bit of a battle on our hands. BUT we are still on it and although it might not be having the same overwhelming experience as before, I do think it is making a small positive difference.
  • Samuel finally gets some teeth! We’ve had teething but no actual teeth have come through yet. Samuel now has five teeth!
  • I get to see much more of my sister and nieces. They live over two hours away and I just don’t seem to see them very much, but I do really miss them. I love and adore them but I still don’t see enough of them. Not for the want of trying though.
  • Sam’s dad has a good year at work and gets the recognition he deserves. All I’ll say is that he works so hard and is so committed to his job, it’s just a shame that some people don’t seem to be able to acknowledge that.
  • Sam gets some strength in his neck and is able to support his own head. Unfortunately no progress here but we perservere with regular physio, so who knows.
  • I master Skype so I can chat with my faraway friends.
    Almost!
  • My blog grows and helps people who find themselves in our world. I’ve been overwhelmed by all the comments I get and the fact that people actually come and read my ramblings! I’ve made contact with a few wonderful families through my blog too which has been great. I love sharing our world and telling the world about our amazing little man.
  • Sam starts hydrotherapy and seems to like it/benefit from it. We did a course of hydrotherapy which I think I enjoyed more than Samuel. He slept through every session and even snored through the last one!
  • We continue to strengthen our friendship with our NICU parent-friends. What can I say? This has been an amazing year as far as our NICU friends go. It’s such a privilege to have them as friends as they are an amazing group of people and their children are little miracles. I adore them! They have all become part of our family!
  • We transform the garden to make it a nice sensory area for Samuel and for it to be more Sam-friendly. Sam’s Dad and Grannie did a lot of work in the garden over the summer and although we have more to do in the Spring, I think we are getting there.
  • I get to meet some of my lovely blogging and twitter friends. I’ve met a few but there are still more I desperately want to meet!
  • We finally start our veg patch and it is a success.
    Failed.
  • My sewing skills improve. I’m notthe best sewer or crafter, but I’ve been really enjoying making things and selling the odd thing. I wish I’d discovered this ages ago.
  • I learn to knit. Started. Stopped. Started again…will try and perservere with it.
  • I do much more cooking and baking. Baking yes, cooking…no comment!
  • Sam’s Grandparents finally get the confidence to look after Samuel on their own, or at the very least start helping by doing things like his nappies etc! No progress unfortunately.
  • We celebrate Sam’s second birthday and Christmas 2012 at home. Samuel has just had his second birthday and we had a wonderful time. Can’t wait for Christmas!
  • We win the lottery so Samuel’s dad doesn’t have to go to work and can  spend ALL day, EVERY day with his boy. Unfortunately we’ve had no luck with this!

We’ve had a wonderful year the three of us. I love my little family and I’m so lucky to have my gorgeous boys. I feel greedy to think of hopes and dreams for next year, but all I really want is to be here this time next year telling you what a great year 2013 has been and how strong our little boy is.

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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)!

Dad

Father’s Day is coming up soon and it got me thinking about my Dad and if you don’t mind, I’d like to tell you about him. My Dad had a lovely childhood growing up with his parents, my dear Grandparents (Nanna), who were very loving and I think really taught him the value of family. My Dad has always been fiercely loyal to us and would do anything for us.

My Dad has a great sense of humour. Sometimes it goes over people’s heads, sometimes even mine but then I think he thinks I’m cleverer than I actually am (one of my greatest achievements may just be beating him in a game of Trivial Pursuit and Scrabble). He is really well-read with an interest in everything. His house is wall to wall books. A lot of non-fiction as well as fiction. They don’t have wallpaper in my parents house, they have books.

Along with books his other passions are steam railway, photography, cameras (he collects them and has, well let’s just say he has a lot of them) and his Grandchildren. It is so obvious he adores his three Grandchildren, Moo, Baggy and of course our Samuel. Watching him with the children and how loving and proud he is of his role of Grandad, just makes my heart swell.

My father taught me so much. More than I can tell you. He taught me about honesty, to love and understand and not to judge. He taught me about respect and to celebrate differences. I could introduce anybody to him and he would welcome them into his home, whoever they were, as long as they were a nice decent person, that was all that mattered. He even overlooked when I went out with a boring, Conservative supporting accountant in my late teens.

I wasn’t anywhere near as bright as my sister, let alone my father, but my parents always celebrated my achievements and were so supportive of all the decisions and choices I’ve made.

He wouldn’t call himself a Christian and he only goes to church for weddings, christenings and funerals, but my Dad is more Christian than a lot of church-going Christians I’ve met. He has a heart of pure gold.

I grew up confidently knowing that I could be anyone, I could be with anyone and as long as they were a good person, my father (and my mother) would welcome them into their home without a second thought. That is an amazing feeling you know, knowing that.

While he does drive my sister and I bonkers quite often, my Dad along with my Mum mean the world to me. We are so very lucky to have them both.

My Dad was good fun when we were kids. An early memory I have (prompted by photos) is of him dressing up as a clown for our school fayres. He was always involved with raising money for our school and would often man the ‘Bash the Rat’ stall (no real rats were harmed). And then there was his Roland Rat impression which was legendary!

Photo of my Dad taken many years ago. He still has the beard (although it’s white now). In fact he’s had it for over 35 years!

My parents, but especially my Dad, taught me to be me. To be independent and stand on my own two feet. He introduced me to music like Blondie, Fleetwood Mac, The Beatles and The Rolling Stones, for which I will always be grateful.

My father is a left-wing, old Labour supporter. The only people I probably hear him criticise are Conservative politicians (oh and BMW drivers – sorry!). And the Royal Family. Oh yes. Despite knowing so much about the history of the Royal Family, he isn’t pro-monarchy. I grew up hearing him say ‘off with their heads’ whenever a Royal was on the television.

Over the years I watched him do so much for his family. Not just us, but for his Mum and his brother. My Uncle died suddenly about 10 years ago and although the brothers weren’t particularly close, it broke my father’s heart. I went with him to the funeral directors to plan the funeral and sort out all the paperwork and I was so proud to see how desperate he was to do everything right for his brother. My Uncle wasn’t an angel and never telling his family, including his own brother, that he had a son who was only a couple of years younger than me, was hard for us all to take. But despite only briefly knowing his teenage nephew, my dear father did everything he could for my ‘new’ cousin and made sure he was well provided for.

I know I get my logical and sensible side from him. Being good at organising, planning and problem solving all comes from him. Although unfortunately I didn’t inherit his intellect but did inherit his eczema and funny feet.

Sometimes life tests you. Sometimes it forces you to declare what is important to you and who/what you would be prepared to fight for. My father has continued again and again to show us, to prove to us, how much he loves us.

I know there will be some people who wont have their Dads here to celebrate Fathers Day and that makes me even more grateful for what I have. And for who I have.

I love you Dad. x

(Do meet my Mum too)

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)

Special needs mums – a look inside

You may think us ‘special mums’ have it pretty rough. We have no choice. We just manage life when things get really tough. We’ve made it through the days we thought we’d never make it though. We’ve even impressed our own selves with all that we can do.

We’ve gained patience beyond measure, love we never dreamed of giving. We worry about the future but know this ‘special’ life’s worth living. We have bad days and hurt sometimes, but we hold our heads up high. We feel joy and pride and thankfulness more often than we cry.

For our kids, we aren’t just supermums. We are cheerleaders, nurses and therapists who don’t walk out the door. We handle rude remarks and unkind stares with dignity and grace. Even though the pain they bring cannot be erased.

Therapies and treatment routes are a lot for us to digest.We don’t know what the future holds, but give our kids our best. None of us can be replaced, so we don’t get many breaks. It wears us out, but to help our kids, we’ll do whatever it takes.

We are selfless, not by choice, you see. Our kids just have more  needs. We’re not out to change the world, but want to plant some seeds. We want our kids accepted. That really is our aim. When we look at them we just see kids. We hope you’ll do the same.

April Vernon

Thank you to @VickyTervit for sharing this.

I wonder

I wonder what Samuel sees as he looks around. Can he actually see light and dark? Make out colours? See shapes? See people? See me?

I wonder how his brain computes the sounds he hears. What does he actually hear when we chat to him? When we tell him how much we love him, does he hear the words we say?

I wonder what it feels like for him when he has a seizure. Does he feel in pain? Is he so use to it that it is just something his brain and body accepts? When he cries during and afterwards is that because he is in distress or just his body reacting to what has happened? Does he feel comforted when we hold him through a seizure?

I wonder if he does try to communicate with us. When he makes cute chatty noises, is he trying to tell us something?

I wonder what he thinks about when it’s bath time. Does he like the warm water around him? Does he like the sensation of having his hair washed and when we pour water over him?

I wonder what it feels like for him when I cover his little face in kisses.  Does it irrate him? Does he like it?

I wonder what he thinks about when we have play time with him? Does it really help him? Is he actually looking at things when I think he is? Does his brain really acknowledge what we are doing?

I wonder whether he acknowledges to himself when it is feed time and likes the feeling of the food coming into his tummy. Does he feel satisfied at the end of a feed?

I wonder if he really knows that we are his Mum and Dad? Does he recognise our faces, our touch and our voices? Does he prefer to be cuddled by us?

I wonder what he thinks about when we cuddle him? Does he feel comforted and satisfied.

Is he content and happy in his little world? I very much hope so.

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

When I was…

When I was five I wanted to be a ballerina.

When I was 10 I wanted to be a vet.

When I was 14 I wanted to be a police officer.

When I was 18 I wanted to be a journalist.

When I was 22 I wanted to be a communications/PR whizz.

When I was 30 I became a mother and carer….what career can top that?

Mum

It’s Mothering Sunday tomorrow. My second with Samuel, for which I feel very privileged. I think by now regular readers will know how I feel about my role as a Mum. But I thought given the day it is, I should tell you something about my Mum. She’s a bit daft. She’s quite quirky. She sometimes drives me bonkers. She is very, very fond of Alan Titchmarsh. But she’s my Mum and I absolutely adore her.

My Mum had a very rough start in life. Her father died when she was only five and that left her in the care of her mother. Her mother was not designed to be a mother. She suffered from schizophrenia and manic depression and while of course that doesn’t make her a bad person, she couldn’t help it, she wasn’t maternal or particularly interested in the care of my mother.

My Mum was essentially brought up by the nuns who taught her and cared for her at boarding school. They were strict (and she did get expelled from a couple of schools, so wasn’t an angel), but they did show her love. My Grandmother (who I never met) would often tell my Mum that she was ugly and no man on earth would love her and she would never have children. She told lies to my Mum and about my Mum. She hurt my Mum both mentally and physically. My Mum did have relatives who cared for her, but they didn’t want to intervene for fear of being banned from seeing her. My mother was born in 1946, so Social Services wasn’t like it is today.

But then when she was aged 25 she met my father and her real life began.

Me, Samuel's mum, as a baby - remind you of anyone?

I’ve grown up always knowing, never ever doubting how much she loves my sister and I. As we grew up she swamped us with love. Even when I had hideous dress sense and probably looked a state, she’d always tell me how beautiful I was, how I was her beautiful girl.  Many cats, rabbits and friends of mine along the way have benefited from her natural maternal love!

Sure, she probably made the odd mistake, she’s not perfect, but that’s only because she’s human. She showed my sister and I what it was to be a mother and the enormous capacity we have to love as mothers.

She’s a Grannie now. Yes a Grannie with an ie at the end. She has two Grandaughters and well, you all know Samuel. She adores the children. She talks about them all the time to anyone who would listen. She is very proud of her family. She makes the children lots of beautiful handmade things and I know that in every single thing she makes, even the bobble hat to match Sam’s cardigan, so much love and care has gone into it.

When things were tricky when Sam was in NICU she was there on the phone for me to cry to. I told her my worst fears. I’m very frank with her about his condition, I don’t sugar coat anything. She rings up all the time to see how we are and how the boy is doing. She wants to know every detail about how our appointments have gone.

I tell her a lot that I love her. We always end our phone calls by saying ‘I love you’. If I ever lost her, my heart would break beyond repair. She’s my Mum.

(My Dad’s pretty cool too, but that’s for another day.)

32

(soon to be) Happy Birthday to me

I turn 32 on 4th May (no ‘may the fourth be with you’ jokes please). I’ve got no problem with saying it out loud and no problem with you knowing it.

It does feel a bit strange, I mean my husband and I have been together since we were 19 and it kind of felt that we would stay in our mid twenties forever.

I can’t really remember if I had any great plans, if I had high hopes to have achieved certain things by this age. I think I’d envisaged I’d have a good PR career. But I also wanted to be a mum, I know that. Well I’ve achieved that with bells on. I’ve got the most gorgeous little boy imaginable.

I think I thought that by now we would be talking about more children. It wasn’t easy falling pregnant with Samuel, it took quite a long time (my eggs were extremely lazy), so I guess if things had been different we might be already thinking of trying again. But things are very different now. We aren’t like other people who can just say, ‘hey, do you fancy having another one’ and just stop taking the contraception and just go for it.

But you know, it might sound funny, but being on this adventure with Samuel and seeing the other children at Julia’s House makes me feel that it would be wrong to be all dramatic about getting older. Samuel isn’t expected to be here for his 32nd birthday and even if he was, he wouldn’t be in a position to be bothered by it. There are all these children that will never make it as far as us. Will never drive, will never marry, will never have a job, worry about paying the mortgage, have children, wonder who to vote for at the elections.

I think it’s almost greedy to not appreciate what we have. What we’ve achieved. I mean children like Samuel wont be in a position to pick and choose what they do for their birthday. They wont get the option to drive a car, to maybe go to university, to fall in love, to have children.

I know life sucks sometimes. It can throw things at you that are just horrible and unfair. Our precious loved ones die, or a relationship ends. But we’ve had the chance to love, to actively know and understand love. To make mistakes, to have a good old row and make up afterwards. Children like Samuel wont ever get that chance.

So I feel that we owe it to them to really enjoy and appreciate what we have. Even if it isn’t very much. We can go outside, stand tall and breath in the Spring air, watch the birds, watch the children play on their trampolines. We’ve got so much by just getting this far. For Sam, 32 is unthinkable, unimaginable. As for him being able to experience what we can, that’s another world away.

I’m not sure what we will be doing to mark my birthday this year. I don’t really drink anymore, so don’t expect any tales on twitter of drunken antics. But I do know that I will spend it with my two boys who I love more than anything and take a moment to really appreciate, really acknowledge just how lucky I am.

Life is short, live it. Love is rare, grab it. Anger is bad, dump it. Fear is awful, face it. Memories are sweet. Cherish them…

(writer unknown)

ABC of me

Well, my dear friend The Perfect Bad Mummy has nominated me for the ABC Award. Lovely you say, well don’t congratulate me too soon as I’m expected to do some work for it.

All I have to do I gather is describe myself using all the letters of the alphabet. Well, not sure where this is going to take me, so wish me luck.

Assertive

Baker

Cuddle-machine

Doofus

Excitable

Friend

Giggler

Husband-lover (only of mine of course)

Insecure

Jaffa cake eater

Kind

Lover of chocolate

Mummy

Nurse

Observant

Patient

Queen of my castle

Reader

Samuel fan-club member

Talker

Understanding

Valuable

Wife

Xylophone player wannabee

Yawner

Z

Well there you go, that’s my list. Lovely bloggers I’m going to nominate are *drumroll*

@deborabora at flumpalump

@pootlehat at Tiddler on the loose

@MyLittleH at Little Mamma said

Today I cried

Today I cried for the children I will not have. For the pregnancies that I will not experience.

I cried because I will never experience that feeling again of a new life growing inside me.

I cried that my body, otherwise healthy, could make a child so ill, so poorly like Samuel.

I cried that if we want more children, we can’t just decide to have them. We might have to negotiate with adoption agencies. We will have to prove that we can make it work.

I cried because we can’t just look to the future knowing that we will have more children. That we will definitely be parents again.

I cried that my husband, who was born to be a father, can’t have another child of his own. A child that will look like him, have his nose and his eyes.

I cried because I feel guilty that I want more children when Samuel should be enough.

I cried because I have so much love inside me to give another child. We both have so much love to give.

I cried because we can’t just have another child like other people can and just make it work like other people do.

I cried because of the raw pain in my heart and stomach that I feel when I see Samuel have a seizure and all I want him to do is look at me and smile.

I cried because I know if we start the adoption process it will be long, drawn out and painful. Having to go over again and again about Samuel’s condition with different people.

I cried because one day we could lose Samuel and I will no longer have a child here to hold.

I cried because I just want us to be a mum and a dad. Forever.

12 random things

That pesky (Just) Above Average Mum also known as @NotSoSlummy has tagged me in another one of these Meme wotsits about 12 things.

Here are the rules you need to stick to..

1) You must post the rules
2) Post 12 fun facts about yourself in the blog post
3) Answer the questions the tagger has set for you in their post and then create 12 new questions for the fellow bloggers you plan to tag
4) Tag 12 people and link to them on your blog
5) Let them know you tagged them

12 ‘fun’ facts about me (in no particular order)

  1. I lived in France between the ages of six and nine.
  2. I was given a pink watch for Christmas when I was six.
  3. I’ve had concussion about three times in my life.
  4. I will soon be celebrating my 32 birthday.
  5. I cannot whistle.
  6. I married my university housemate.
  7. I had a deaf and diabetic cat (RIP Basil).
  8. I only learned to swim when I was 26 (and still not very good at it).
  9. I’ve been together with my husband since I was 19.
  10. I was nearly in a French film when I was 8.
  11. I tried to convince people at school that my middle name was Bob. It’s Clare.
  12. I’ve never watched the film Bambi.

My 12 questions sent to me by (Just) Above Average Mum

Have you ever been stood up? Not that I remember. Probably, but by a platonic friend rather than a romantic one.

What was the first thing you thought of when you woke up this morning? When was the last time my son did a poo.

What 3 items could you not live without? Husband, son and chocolate.

Soft or hard cheese? Difficult question. Love cheese. Probably hard.

Have you seen all the Star Wars movies? No. Seen all the ‘proper’ oldie films but only one of the newer ones – it was the one that had the guy in with the red face.

What is your most annoying habit? Talking too much probably.

Do you have a favourite joke? And can you share it? Pass.

Do you believe in fate? No. To quote Keanu in the Matrix, I don’t like the idea that I’m not in control of my life. Which may be considered ironic given my thoughts on the guy in the sky.

Cats or dogs? Cats.

What was the last film you watched? Second Sherlock Holmes film with Robert Downey Jr. Enjoyed a massive hot dog at the same time.

What one word would you use to describe yourself? Complicated.

What’s your favourite tipple? When I was a drinker then it was a gin and tonic or a lager. Now it is more likely to be a glass of Coca-Cola.

To copy (Just) Above Average Mum I will also divide 12 in half and tag six lucky people:

@mrsaimeehorton

@Limmster

@jowonderwoman

@MrsCMonkey

@MostlyYummy

@a20somethingmum

Your 12 questions

  1. What is your middle name?
  2. What was the last blog you read (before reading this one)?
  3. What is your favourite book?
  4. What do you have on your feet right at this very moment?
  5. Marmite. Love it or hate it?
  6. What should you really be doing right now rather than answering these silly questions?
  7. Who do you think should play you in a film about your life?
  8. What was the first pet you had and what was its name?
  9. If you could only ever watch one film again, what would it be?
  10. Favourite smell?
  11. What word/phrase do you find yourself saying a little too much?
  12. You are on Come Dine With Me – who would be your ideal guests (alive or dead) and what would you serve them?

Good luck!

Nanna

For some reason lately I’ve been thinking about my Nanna. I don’t know why.

My Nanna was my Dad’s mum and she died about seven (ish) years ago aged 84. Towards the end she was in a nursing home because she had dementia and could no longer care for herself.

I only ever knew one set of Grandparents and I adored both my Grandad and Nanna. But my Nanna is more prominent in my memories. She and Grandad lived in Hove near Brighton and we use to spend a lot of time there when we were children. I loved Brighton. It was always my dream to move there. I was going to buy a Citroën 2CV and marry an artist or a sculptor and live in Brighton. Well that was my dream when I was 17.

My grandparents in their younger days

My Nanna use to do a lot of baking and I often wish I’d taken more notice when she tried to teach us how to cook and bake. She was a very good baker. She liked to listen to Stevie Wonder in the kitchen while she was baking. We played I Just Called to Say I Love You at her funeral.

I  know she frustrated my Dad a lot. She was daft sometimes, interfered and would insist on dressing my sister and I in girly frocks when my parents wanted us in jeans and dungarees.

My Nanna adored her family. She was one of seven siblings and she was probably the only one who gave so much to her family. She would regularly babysit for her sisters and was always doing things for her family. At her funeral one of her nephews told me that he was so jealous of my Dad and uncle that they had parents like my Nanna and Grandad.

My mum never really wears makeup but my Nanna did and always looked lovely. When I was a child I’d watch her put her makeup on and do her nails. I wish she had been here to see me at my wedding.

She was so very proud of my sister and I. She loved us very much. She use to tell us stories of her childhood, when she met Grandad and when she was in the Women’s Royal Air Force during World War 2.

I believe she would have loved Sam. She would have been overjoyed that she had two great-granddaughters but I know Samuel would have won her heart. She would have done everything she could for him.She would have really enjoyed how cuddly he is and even though she was always very smart and well dressed (I only ever saw her in trousers on a Friday when it was housework day), it wouldn’t have stopped her getting on the floor to play with him (if her old bones allowed) or give him a good squeeze.

My Nanna’s name was Olive May and I miss her.