Baby loss awareness week…

Ended today with the Wave of Light at 7 pm. I am currently lay in bed next to Oliver who kept trying to blow my candle out.

1 in 4 pregnancies in the uk end in loss during pregnancy or birth. And yet we don’t talk about it. Why? For me it’s because I have no words that I can say to those close to me. There’s no words they can say to me. There’s nothing that can make it feel any better really, except maybe time. I just don’t think they’d understand the pain and grief. Or maybe I do them a disservice and I don’t talk because I’m scared of going back to the dark thoughts I had then, saying it out loud would be so painful, I don’t know if I can do that.

Anyway Twitter was awash tonight with the Wave of Light. So many families going through the same things. Some were just candles, some had names, some had poems and some were written by people who haven’t experienced baby loss but wanted to show support. It made me feel less alone. I lit my candle for longer than the requested hour and joined the Twitter wave. I found everything I read made me feel so sorry for these people, their stories are heartbreaking. Much worse than mine.

I think we need to stop the silence around baby loss. This week of awareness has certainly made me aware of how isolated people become. How no one knows what to say so say nothing. How people decide how long you can grieve for or tell you it’s nothing to grieve over. Everyone is different and it’s not something everyone can get over.

Don’t ignore it if it happens to someone you know. Don’t say they can try again or “these things happen for a reason”. Use the baby’s name if they have one. Ask how dad is feeling too, he often gets overlooked. Just be there, even if you feel you aren’t doing anything helpful, it will be appreciated- so many people pretend it never happened or disappear.

If anyone reading this has experienced loss of a baby there are plenty of helplines out there and forums where you can get support. You aren’t alone. Just check out #WaveofLight on twitter and you’ll see just how many people are in the same boat as you, trying to stay afloat. I wish for you to find peace.

In memory of Virginia and Edmund, my angel babies.

P.S Please forgive the rambling nature of this post

Xx

Finding time for everyone.

Having 3 children at home with different abilities and needs and no sleep is difficult to juggle.  I’ve made some choices over the years that people haven’t agreed with but they don’t live my life.  When Max was little he stopped sleeping.  2 hours a night was his maximum.  We moved house so Emily would have her own room and not be disturbed by Max.  Once he was diagnosed, we got assigned a social worker (they don’t do that round here now) who talked about various respite possibilities if that was something we wanted to look at.  I thought about it a lot.  Emily had been put in second place while all the diagnostics were taking place and it didn’t seem fair to her.  She needed to know she was important too.  So we chose a “Home from Home” scheme where he would stay with another family and we got 28 days a year which we took as weekends.  Fortunately we got an amazing family. Mr and Mrs F had 6 children (one still at home), lots of grandchildren and had been doing this for 15 years.  Max did whatever they were doing whether it be a family party, trip to the beach or just lounging around the house.  One of their grandchildren was a similar age and they were close for a good few years until he outgrew Max but by then Mrs. F’s youngest had a daughter and Max transferred his friendship to her.

Making the decision was not easy.  I should be able to look after my own kids.  What would people think? Would social services look at me as an unfit parent? But if he had grandparents who could have had him the odd weekend we wouldn’t have had to go down this route.  So Emily got some designated time to do whatever she wanted.  We could go shopping, she could have a sleepover, we got some sleep, we could do stuff that we couldn’t do with Max.  I tried to always keep him involved and we went out a lot but he had a habit of being in clothes shops and stripping off which didn’t make shopping fun for her.  Max still goes to his respite, he got a personalised budget at 18 so he could employ his own people and he’s been going there almost 20 years so why change something that’s not broken?

Obviously Emily got to an age where she wanted to start hanging with her mates so I had some me time finally.  Weird feeling when you’ve never really had it, but I got back into reading and found friends on line and discovered the game Runescape so I filled my time.  We took her on one holiday without her brother too, just so we could reconnect and she could choose, you know not everyone wants to ride camels, Max!

Now I have 2 young kids and Max still at home and juggling time is so tricky.  They all have homework to be done, the boys have speech therapy, I have to cook and do housework and have very little sleep.  We went to Butlins, which turned out not to be a family holiday as such but we still got to spend time with each of the kids.  I was a single parent when Max and Em were growing up which made it tricky.  Max hasn’t had a holiday for a couple of years (I’ve written about his troubles before) but this year it felt like he was ready to maybe try something new again.  Instead of spending our anniversary weekend just me and the hubs, we decided to take Max for a weekend away.  Cadbury land and a theme park, 2 nights in a hotel, the hotel did food, and accommodated 3 adults in one room.  He did really well.  There was a couple of squeaky children at breakfast the first morning, so the next morning we were breakfasting as soon as it opened (very early) so he could relax a bit more.  He chose his own food from the menu, they catered to his separation of peas from his fish with no bother and he got free chocolate at Cadbury land.  It was a success.  But that was our anniversary weekend.

Hubs took off the week after Max’s holiday.  He did the school run for me while I dropped Max off and we spent the week together.  Some of it was shopping and Christmas shopping but we had time to sit together and talk and read and have hot drinks and I  got to garden and he got to do his records thing with no one going “mummy, I need a drink” “Carry me” or stopping squabbles.  It was only a few hours a day but it was nice having some us time. Time that we don’t get in an evening because of aforementioned children “NO BEDTIME!” “mummy I need some water” “poo poo mummy” “I’m not tired” etc etc. I counted how many times we have shared the same bed and in the last 2 years we have shared it 3 nights.  2 of those were on Max’s weekend away and once at home.  Well one and a half as Oliver woke up at 3 and had a meltdown because he was alone, we’d fallen asleep watching a film- won’t make that mistake again.

We try to take the kids so one of us can have some down time.  I ran a bath and sneaked upstairs and was just about to sink into the bubbles when Oliver was stripped and in the bath like lightening.  Hubs got a book out when I set up craft time but funnily enough as soon as they saw him sat there they wanted him and no one else would do.  So now we have kind of accepted that our time together will be him taking days off work so we have the days (all 5 hours) together.  Me time- well I think that’s for other people really.  Not that we will stop trying to give each other some breathing space and recharge time but the children are formidable opponents 🙂

I think that having 2 of us makes things easier in a way, no one is left like Emily was when she was younger, so we don’t have to look at respite for Olly.  His grandparents have no kids at home now like they did when Em was little so we can always book them in for a day to do something special for one of them, and Em helps out too.  Our needs have to be put on the back burner in some ways, but that’s the same for any parent isn’t it? It just means we have to find new and more interesting ways to keep our relationship going.  On the plus side, I don’t think we will ever get complacent with each other, we don’t get enough time together to take each other for granted.  It’s funny how what people see as odd becomes just part of life to you, something you don’t think about until you come to tell someone and see their face change.

I think as soon as you become a parent you get an extra guilt gene.  It doesn’t matter what you do you always have a twinge of guilt- are you doing the right thing? Are you being selfish? At the end of the day, it’s what works for the family.  I felt so guilty sending Max to respite but Emily needed a mum who wasn’t permanently exhausted, who did things with her and made memories and put her first.  I would have had guilt either way.  I swear it’s the extra guilt gene.  Obviously what worked for me and what works for us doesn’t work for everyone, but I carry enough and I am not going to let anyone else make me feel guilty.  I may not always get it right but I’m always trying to make it fair for all the children and I’m sure they will be the first to tell me when I get it so wrong, and then I’ll try again.  It won’t be like this forever, but while it is we just work around it and make the best home life we can…..for everyone.

 

xx

Olobob Top.

Olobob Top was created by Leigh Hodgkinson and Steve Smith.  It is a programme currently shown on Cbeebies aimed at pre-schoolers.  I knew nothing about it until May this year when Oliver’s TA came out of school with him and told me about this “bigtop hill thing” programme he’d found on the computer.  It had apparently amused him no end so she was going to find the proper name and make a card so he could put it on his “working for” board.

Now I know that sounds nothing in itself, kids go through phases but let me expand.  From age 2 Oliver went to a private nursery.  He stayed there (3 sessions a week to help socialisation) until he started reception class.  He never brought me a picture home.  Never painted anything for me.  In almost 4 years I never got a painted picture, a drawing or even a scribble.  I asked school not to send home teacher made things like mother’s day cards unless he’d done it because what’s the point? That’s a personal choice, if others want them then that’s fine, what works for me doesn’t work for everyone.  It hurt a little especially as Popples was painting mad and my cupboards were full of her pictures, except a space I’d saved – just in case.  The day after Mrs D (TA) had told me about this thing he’d found on the computer I went to pick him up as usual and she came out smiling.  “Show mummy” she said to him and he presented me with this printout of a scene from Olobob Top (yes she found the right name) that he’d created himself.  He pointed to something and whispered “Tib” so I repeated it and praised his beautiful creation.  He looked quite pleased.  We showed it to Popples, I took a photo and sent it to his dad at work.  I found the blue tac and stuck it up.  He had made it!

The next day he came out again and he was smiling and Mrs D was practically bouncing. He handed me 2 sheets of paper and said “olobob top”.  I looked and almost cried- they were paintings!  not only paintings, but you could actually see 3 different figures and they were recognisable as Tib, Lalloo and Bobble.  This was the start of a new chapter for him.  Usually uncooperative at craft time, he painted, he crayoned, he drew on the conservatory walls (who cares it’ll wash) he made play doh models, he made characters out of stickle bricks and he verbally requested “computer”.  He often speaks in a whisper but some words were getting louder.

The biggest thing was reading.  I know I’ve talked about Julia Donaldson’s books allowing me to spend quiet times with him, but things changed when Mrs D gave him 2 books for his summer gift.  These were his books, they had his name in them.  One was a sticker book, and the other was a flap book.  He doesn’t like stickers.  I tried to show him the stickers go in the book to make scenes but I got screamed at “NO MUMMY! IT’S MINE!” ok fair enough.  He took his books upstairs out of my reach.  That night my husband put Max to bed and when he came down he told me that Oliver was currently sticking stickers all over his bedroom.  He didn’t know what to do because he doesn’t do stickers so I went up and said “what are you doing?” “Sticking” was the response – TO A QUESTION! “Sticking olobob top” he expanded while I stood looking at the stickers on the carpet, duvet, wall, pillows and chest of drawers.  “That is fabulous sticking! You are so clever. It’s beautiful. Well done!” The pride on his face nearly made me weep.  The I got invited onto the bed to look at the flap book.  I tried opening it but it got pulled away so I sat back and let him lead.  Eventually he moved it to within eyesight and pointed to the figures naming them.  He’d point, say the name then look me in the eye (we don’t demand eye contact in this house) and wait for me to repeat it. Then he’s nod and reconfirm.

Our next reading session was instigated by him.  He pointed to a pink bird on the cover and said “BIG” but I thought he said pink so I said “Pink”.  He shook his head, and I thought I was going to lose him, he doesn’t like it if I don’t get it straightaway.  He sat there and repeated it but we were having a miscommunication.  Eventually he took his finger and ‘drew’ the letter b on the bed, then I then g.  Light dawned “oh Big! big bird”. He then turned the book over, pointed to another bird and said “little” I repeated it then he pointed to another bird and said “small”.  I didn’t know he knew that word! We were having a conversation.  He was waiting for me to repeat, giving me eye contact and being in charge.  I didn’t touch the book.

Every day he was saying “upstairs, Olobob Top book” and we were reading the way he wanted to.  He was gaining in confidence and trusting me not to take over and let him lead me for a change.  One day he pointed to Tib and said “it’s Bobble” so I copied and said the same, he looked at me and burst out laughing and said “it’s not Bobble, it’s Tib” oh dear, silly mummy.  And that was the game that session, making mummy look a fool! But it paid off because the next day he finally opened the book and I got to see the inside, but just the first page. “Lalloo’s dress” so I added the word spotty. “Tib’s pants” so I added the word stripy.  Expanding his vocabulary with no pressure for him to say it back, just giving him a word he might not have but if he chooses not to use it at that time that’s fine.  He told me shapes, fish, trees, the other characters.  If we are making stuff he says “you could make it up” and gets stuck in.  He also has expanded his wardrobe thanks to Tib’s stripy pants, which is lucky as he ripped the bum out of his tartan ones swinging on his curtain pole, and all his other jammies were stripy.

2 more books were released (and bought), although I’ve not proved myself worthy enough to be able to read Norbert’s shop yet I live in hope 🙂 We were talking about Christmas with Popples and he came over and said “Olobob top toys, yes, Christmas” so I had to tell him there were no toys which we confirmed by googling, so he asked for “dvd yes” and again I had to show him there wasn’t any. He did his sad face but quickly rallied and asked for Go jetters instead.  They have a laptop where he goes on and plays games, makes characters and scenes etc.  He asks for it “computer cbeebies” or whatever he is after that day.  He chooses to read with me, he does crafts, he has taken a passion of his and instead of it being confined to one repetitive game or action, he has brought it into more aspects of his life.  He hums when he is doing things now, he talks quietly to himself (still a lot of jabber but some words) when playing, he seeks me out to do things instead of me having to instigate it, he knows his choices are important now.  They always were but I don’t think he knew that.  Now he knows if he wants to talk about the size of birds for half an hour, then mummy will stay and have as much enthusiasm at the end as at the start.  I know there is a long, long way to go.  I know that I may never have a conversation with him that runs along more conventional lines.  I know his language is still miles behind.  I know the sound of his voice, I know his laughter, I know he can joke, I know he is clever, I know that what he gives is the best he can and I know that’s enough. He’s calmer, he’s more patient and he’s more willing to try new things.

I got a painting off my son.  He was 6 and I got his first painting.  That was enough, everything else that has happened is a bonus.  We were lucky he found something he felt so strongly about that he wanted to share.  I know that Leigh Hodgkinson, Steve Smith and the Olobob’s don’t realise the world they’ve opened to my son has helped him, and us, so much.  Thank you

xx