Tuesday 31 July 2012

Round Up and Moving Forwards

Doing what I do best - talking at the Total event
It's been a busy month on my blog, and in real life too. I'd like to thank my lovely guest posters for sharing their stories, and all of you who read, comment and share on your social networks. Thank you again for all your support and kind words.

August will be another busy month, I have quite a few exciting products to tell you about, a little giveaway and a few more exciting things so watch this space.

One thing I really want to do this month is a multiples week. Clearly I had a singleton, but many of you in my community have had multiples and I'd love you to tell your story. I am looking for stories on all sorts of aspects of life with multiples.
  • Managing a NICU stay with more than one baby
  • Life with multiples after a singleton
  • Life with a singleton after multiples
  • Fun activities to do with your multiples
  • A day in the life of a multiple mum
  • A multiple pregnancy journey, what its like being pregnant with more than one
  • Essential items to make life easier with multiples
  • How to choose a multiple buggy
If you would like to help please email me at notevenabagofsugar@gmail.com and I'll tell you more. Just a word about word limit, I like articles to be between 500 and 750 words please!

I'd love to hear ideas about other things you would like me to cover, or if any of you would like to submit a post. Books your kids love, places to go, anything! Whilst the primary focus of Not Even A Bag of Sugar is about premature babies and pregnancy, our babies grow up! I really want to explore the parenting side more, and would love your input!

I am also planning something big to help people in my area with travel and other costs of having a baby in special care, so any ideas are welcome. I am not sure what form this will take, and am looking into links with existing charities and organisations in my area, and looking at need. I will need help, so if anyone has experience of this sort of thing, please let me know!

I am also going to continue the series Just One Thing, with my crowdsourced articles, if there is a topic you would like covered please let me know and I'll ask my team of oracles!

Thank you again for all of your kind support!


Monday 30 July 2012

Just One Thing - That Would Have Made Your NICU Journey Easier

I asked my NICU parents yesterday to name one thing that would have made their NICU journey that bit easier. The answers, I have to say, broke my heart. Some of these things are so easy to achieve. I am wondering if, those of us who have finished their journey, don't realise how universal our wishes are. I know I thought I was just over reacting when I wished there was somewhere I could make a hot brew, or have my transport covered to an extent. So please read and let's try and come up with some solutions.

For me I would have to say subsidised bus fares, I would love to have to never leave her but I have four more little monkeys at home to tend to.

When my son was in the NICU for 5 weeks I got to stay in the hospital but in a diff room. I was on the paediatric floor and they gave me cards for my meals, which was a total blessing and I am not grateful enough to that hospital for them doing that for me. But my next thing I would love is now I have my son who will be 2 years and 3 months when his sister will come if she is term. Now if she comes earlier my thing would be to have hospital day care for him while I would go see his sister or be able to have him stay w me there if she did come early.

This may sound a bit silly but for me it would have been consistency. Some nurses were all for kangaroo care, some wouldn't let me have him out for a hug at all, some liked to have him swaddled before I could hold him. Same with feeding advice, and the breast feeding support was lack lustre at best.

Accommodation on-site (preferrably free or heavily subsidised as it is dreamworld!) so you are literally minutes away. With a really good shower! When Alice was in PICU I did get this (the room, not the shower) in a house run by the Sick Childrens Trust and to this day, it is one of things I am most grateful to as it truly made the difference and let me sleep not least as the rooms had a direct line linked to your child's ward/cubicle. Also a fairygodmother to sort out all the fiddly bits. I spent a lot of time in NICU running around sorting out job things, contract loopholes and finances and as no one could tell me what I was entitled to, went back part time for a bit in the feeding and growing stage. At the time I was doolally with it all but now thinking back it breaks my heart a little at loosing this time. I wish someone could have sorted it all for me, to give me much needed time in the unit.

If the midwives on the delivery suite (who were lovely btw) and drs ( not always so lovely) could have appreciated I really wanted to spend all my time with my babies and that when I was back in my room I really wanted to sleep ( as you would at home). What I didn't want was them phoning the unit and telling me I needed to come back to have medication that I had waited around for. Or, even after I had told them that I'd be back at x time, that they'd be available and instead of being able to sleep I had to wait for bp to be done or medication - frustrating!

A place you could leave your other kids. My husband works and I've had 4 prem babies n its hard to find someone to have your kids everyday even if you had to pay towards it would be better then them getting bored after ten minutes.

Consistency between hospitals. Being able to tube feed in Lexie's first hospital and hold her when we wanted (as long as reasonable) to going to somewhere we had to ask permission to get her out of the incubator and no tube feeding by parents allowed, was heartbreaking!

The 2nd hospital was brilliant, don't get me wrong. Just the complete change in rules and seeming removal of responsibility from us as parents was really distressing at the time.


A crèche within the unit for older siblings would have been a godsend! My husband used all his paternity leave and holiday being at home to look after our eldest while I was at the hospital with our baby. If I could've taken her with me to the hospital then my hubby would've had time at home when my baby came home.

The thing that would have helped us would have been a microwave in the family room! I'd have loved to have eaten something better than pot noodles and sandwiches every day!

A fridge in the family room as intensive care was sooooo hot and everythings was just disgusting when you came to eat it, and the hospital food was really expensive.

When Isabella was at Leeds they provided (from the canteen) 1 hot meal & drink every day to all mums that were breastfeeding/expressing. However, this wasnt an option at Halifax. In fact there canteen closed at 5pm & wasn't even open weekends. So I guess better access to food/drinks for parents. I also feel that some sort of easy access to counciling would have been good, both at the time & after.

Subsidised B&Bs close to the hospital. George was in last winter and is was always worried that if it snowed/was icy I wouldn't be able to get in. It would need a fridge in the room if you were expressing etc

Somewhere to go to cook something, rather than eating at the hospital as was so expensive, and free parking for NICU parents, we didn't chose to have an early baby. 102 days payin for parking was expensive and the money could have been better spent elsewhere.

Designated / free parking spaces for people in SCBU. We have enough to deal with without spending 30 mins looking for a space when drs are doing rounds. And the cost is so much!! 

I agree that knowing you were entitled to meals, i didn't know until after i had stopped expressing. I also think that being able to get help with the additional costs, travel or accommodation would be good. But overall i think that the thing that makes the nicu journey easier is good staff, or more specifically, good communication with the staff.

Free meals and or subsadized travel would help. I had to take 2 buses, a train and a bit of a walk to get to my daughter her first 3 weeks. I had to choose due to money issues weather to see her or eat. She won and i didnt eat for 3 weeks till she was moved to a more loca hospital. My milk supply dwindled and i spent the next 14 months on domperidone to enable me to continue expressing milk for my very ill baby

Somewhere where I could let my other child play or relax whilst I spent time with the twins

A room so I could have stayed in, breastfed and established feeding earlier - interestingly our local unit has just opened a dedicated transitional ward for women whose babies need special care but are not very high risk, so that mum and baby can stay together - not perfect because dad misses out, and the room is not private, but much better than being completely separated and waking up on a ward full of women and their babies when you haven't got yours.

We didn't have free parking or free meals or a family room. There were no private places to establish breast feeding or to pump milk - if the doctors were doing their rounds we had to go onto the post natal ward and pump there, surrounded by women and their newborn term babies. And there was only 2 rooming in rooms so you only got your 2 nights - Theo ended up having his NG tube down for a week longer than necessary because we had to wait to room in and I wanted to fully breast feed so he wasn't to have bottles, much to the irritation of the nurses. Also, somewhere for the older siblings to be welcome too - they were seen As a nuisance most of the time.

Transport as I had to drive myself in twice a day even though i wasnt physically ready - couldnt afford taxi due to distance and would of taken 3 buses there and another 3 back

3 one things? A good relationship with staff who are responsive to maternal relationship building, a local milk bank or access to supply, a larger neonatal area so women can stay with their children - whether beds or at least space for a comfortable chair (perching on high stools for hours does not count as a comfortable chair!)

A room on the unit with a fridge to keep a sandwich in and comfy seat to sit.and a kettle to make a coffee instead of spending a fortune in the canteen.

Consistent advice & information from the staff would have been my biggest wish. An introduction to the new ward when she moved hospitals - i didnt know there were tea facilities or a microwave     

comfy Seat next to his incubator would have been amazing.

I would love to hear other people's thoughts on this too, maybe your unit or local area had a solution to these. Please read and comment! 


Sunday 29 July 2012

The Reluctant Potty Trainer


Potty training has frightened the life out of me. I don't know why, but the very thought as had me breaking out into a cold sweat. I did a bit of reading and everything I read seemed to make me more anxious and confused. I found advice conflicting too, so I just kind of put it on the back burner, and waited for a sign, like I have done with all other parenting decisions.

It was my husband that started it. He bought a little (cheap) potty at Tesco and put it downstairs. Of a morning he would leave Joseph nappy off until I got him ready for preschool. We didn't go at it 100% and just let Joseph set the pace, this was two months ago.

To our delight, whilst on holiday in Germany, we found Joseph did the same routine as home, and happily went to the potty himself. Over those two months he'd learnt to pull his trousers down and pull them up again. I bought him a selection of underpants. On our return from holiday last Sunday, we started.

I felt really anxious, as I don't drive I was wondering how I would get anything done, would we be housebound until it was sorted?

On Tuesday I discovered that we needed to go shopping. I popped Joseph in his trousers with underpants, and we walked 20 minutes to Tesco. When we got there, we went to the toilets on the guise of Mummy needing a wee. Joseph decided he would like to go too. He did a wee, we did our shopping we got home fine. On Wednesday we took his bike to the park. We found a quiet tree when it was time for Joseph to do a wee. On Thursday we stopped in, on Friday we went to an amazing event I shall blog about during the week, and he was absolutely 100% fine.

I always intended to wait until around 3 years of age corrected, and Joseph is just shy of that. I am glad that we've waited up until now as he is clearly ready, has the maturity to understand his bodily requirements, and the ability to manage himself independently. I am so proud of him!

We have had no accidents at all. Even naps, he's been fine. I had no idea he was really ready, and he's done me proud this week. Poo is a bit of an issue still, but Rome wasn't built in a day, and he'll get the hang of it!

I am sure there are lots of you out there tackiling potty training during the summer holidays, how is it going?

Friday 27 July 2012

Saying Goodbye

Today I want to let you know about Saying Goodbye a set of national services for parents who have lost a baby, at any stage - miscarriage, stillbirth, neonatal loss, or in the first years to say goodbye in a community of people who understand.

It happened so quickly. I felt sick, my mum suggested I do a pregnancy test. I did one. I couldn't believe it. I did another. I still couldn't believe it. I was excited, scared, apprehensive. I went to the GP, we worked out my dates. And then it happened. I went to the toilet and there was blood. This was in Australia, and I called the GP who sent me straight to an obstetrician. She did a scan. She said "sorry". I cried. I went to hospital and had a d and c. And cried more and more until there was absolutely nothing left. 

I was plagued by thoughts. Did I have a girl or a boy? Would I ever fall pregnant and keep a baby. For you see, this was my second miscarriage. My mental health disintegrated, as I pushed myself back into work too quickly. I was prescribed anti depressants. They didn't work. I wasn't depressed, I was grieving.There didn't seem to be anywhere for me to go with that grief. I couldn't say goodbye  "At least you know you can get pregnant" they said. "Well it wasn't good timing", they said.  My relationship shattered under the pressure and then I moved to England. I ran away.It took a further 10 years for me to get pregnant.

I never really got to say goodbye to my baby.

We, as a society,  don't talk about baby loss nearly enough. When Joseph was born a lot of people felt they could share with me, and I was open to hearing the stories I was told. I spoke to 70 year old ladies in the local market about their pregnancy losses over 40 years earlier. A woman at my church opened up about her premature baby, born nearly 3 months early, who in 1950 did not stand a chance. There are many mothers and fathers, some who have never held their babies in their arms grieving for babies they never met, or didn't know for long, carrying a burden of grief in their hearts. Maybe you are one of them.

Saying Goodbye is a set of national remembrance services for babies who have at any stage, from conception during their first years. The services are being held in cathedrals, major spiritual centres,in places such as Manchester and York, there is a list on the website and more being added. The services are multi faith in nature and all are welcome.

Every time I attend a cathedral I light a candle for my babies, and remember all the babies I know who have been lost. Our babies deserve to be remembered, and to be laid to rest. I strongly believe that there is comfort in being part of a community of faith, whether that be Christian, your own faith or another faith. We are all united in our grief and together we can support each other, grieve together, and share our sorrow for the babies we have lost.

I will be at Manchester Cathedral, finally laying my babies to rest, and Saying Goodbye. Join me.

You can follow Saying Goodbye on Twitter and Facebook.

Thursday 26 July 2012

The Importance of Midwives #moremidwives

Today's post is all about midwives, and why we desperately need more midwives. There is currently an epetiton from the Royal College of Midwives that closes very soon, and we need more signatures for this important issue to be raised in Parliament.  To read more about the campaign please visit the Royal College of Midwives. 

I have to admit, that before I fell pregnant I was slightly ignorant about the role of the midwife. Yes, I knew they looked after women in pregnancy, and were there to help in labour, but I had no idea of the complexity of their role. Until it happened to me, I had no idea how common premature birth is, let alone all the other complications that can happen in pregnancy.

When I arrived at hospital at 26 weeks and 6 days, a lovely midwife took me under her wing. She reassured me, did tests on me, and was there when I was given the devastating news that my son would be born at 27 weeks gestation. She was there with me the night before his birth. I had to have 48 hours intense monitoring, and she happened to be on nights. I had the most awesome continuity of care. I felt nurtured, supported and safe, even though I was so poorly and my baby was in danger.

The simple fact is, we need more midwives working in the NHS. Over the last decade, the number of births in the country is up by over 22 per cent. Over the same period, however, the number of midwives has risen by less than 17 per cent. Women are having babies later, there are more multiple births too. We can manage complications now that we couldn't do nearly as well 10 years ago. It is clear that we need more midwives. In addition, we need plenty of midwives on hand to help trainee midwives receive the benefit of this experience, and to become good midwives themselves.

I asked some of my Facebook followers to share their positive stories of midwives.

Manuela Fernandes©The Royal College of Midwives 2012.  All Rights Reserved
My first four children were delivered by my community mw helping - she wasnt even on shift for 2 of them but made sure she was 'just passing' when I was in labour

In labour with Daisy, my midwife said "dont be scared honey, only very special people get these babies, as the babies know that their mammys will always look after them properly", and her words have stayed with me ever since.

The midwife who delievered both my girls! She greed to be my midwife with lottie as I had booked a home birth, when the time came and I was in labour she was just in her pyjamas carving up a chicken but left all of that and came out to me. With my past history of abuse she knew how to treat me and my blood pressure and pulse remained low during labour for me to deliever lottie at home. She even gave me her personal mobile so I could text her anytime and even on her days off came to help me breast feed lottie without her I wouldn't have delievered at home or even tried to feed lottie myself

During Olivia's delivery, my midwife sat and held my hand while updating me as to what was happening. My Husband didn't get to the hospital in time so I was grateful to have someone with me. My Mum in Law just made it into theatre before Olivia arrived but I'll never forget how calming the Midwife was

A hug when I broke down after a breastfeeding nightmare. It was exactly what I needed at that time. All the chocolate in the world couldn't take away my pain and my other half, bless him, just couldn't appreciate my distress. The same midwife, when I saw her a few months later at baby clinic, said "You're a natural, I'll see you in two years with your next one". Which she did. I've had a few problems in the old happiness department since then, and in my second pregnancy, she was incredibly supportive when my GP frankly wasn't.

The midwife who looked after me during premature labour with Harry was awesome. She kept us all wonderfully calm during a very stressful situation.

The midwife who was there when I was told Sophie would have to be delivered that day was so lovely. I was panicking and in tears, and she gave me a big hug and really calmed me down. I will never forget that.

When the doctors were adamant I was to have a c sec due to not progressing, wrong position etc my mw knew I didn't need it and with her guidance helped turn mia and get her descending. Without her I would have had the c sec perhaps unnecessarily

When i had my angel Kayleigh at 26weeks i had to stay on delivery suite for nearly 2 weeks due to my blood pressure. I had pre-eclampsia and eclampsia and had an emergency c-section. My midwife was amazing, she looked after me one-to-one until I was well enough to be discharged and I dont think I could have got through it without her. She was there for me for everything even if was upset we sat and cried together  

I had to be transferred urgently to a hospital with a better NICU, I wasn't in labour but my son was struggling. The midwife on that night was amazing, she moved me to a side room, she listened, she monitored me and she came with me in the ambulance. She had a gentle and lovely manner and made a tough night easier. I will never forget her.

I feel very strongly that we need more of these midwives, so that every baby gets the very best start in life, and every woman gets quality care. If you agree please sign the epetition. 

On Twitter and Google Plus please share the epetition with the tag #moremidwives

Thank you


Wednesday 25 July 2012

Just One Thing - Life at Home with Your Special Care Baby

I am, from time to time, doing posts I am calling Just One Thing. These posts are sourced from my huge community of parents who had had a baby in special care. I asked my community of parents to share just one piece of advice for parents bringing home their baby after days, weeks or months in hospital.

When we came home, I found that Joseph's routine went to pot. His sleeping was erratic, his feeding was difficult, his weight gain was less than optimal. My one piece of advice is that now, 3 years on, I realise this is totally normal. Babies (and parents) become a bit insititutionalised, and once home things can go awry. My one piece of advice is to trust your instincts, and just give yourselves time to adjust.

Remember they wouldnt be coming home if they weren't well enough, try not to freak out too much. After spending 102 days in NICU I was terrified but it was fine.

Go for walks. You've been couped up for so long in hospital it will do you good to get some fresh air. Plus the fact that most units only allow grandparents as visitors to see baby, you can really show baby off and feel proud!! I loved it. I felt like the actress in a film "wish you were here". I would walk up the road thinking, "he's mine, all mine!!

Take each day as it comes & try not to focus on what has happened before. Enjoy your baby been home & look forwards.

Lock down for the first few days no visitors just you and your baby time with unlimited unsupervised cuddles

Take time to just be with your baby. We made the mistake of letting the close family come round that first full day we were home. They were all so desperate to see her but I do regret it a bit. I think we should have had at least a couple of days to get used to just being the 3 of us first .

Don't be afraid to ask for help. When James had been home a couple of weeks due to reflux and new enviroment I was running on no sleep and one day he screamed for hours got myself into a right state saying to him Im sorry for being such a bad mum and felt I couldnt look after him. Finally I decided to phone my mum who was up in a shot to help settle him down and let me sob to myself in the bedroom and get a couple of hours sleep in. As Paul worked 15 hour shifts back then i was doing it all myself most of the time and just having a close relative nearby just to come over even just for an hour to let you take a breather was a sanity saver.

Make sure that you consider carefully who's help you accept taking baby home if you will struggle with transport. We had Father in law with us and it totally ruined it. He couldn't believe we had to put baby in a baby seat as surely she would have been safest in our arms (yes, seriously). He was grumpy and opinionated and that is what I remember about taking C home. I really regret letting him share in what should have been a precious moment as he did not deserve it or respect what a special time it was.

Accept that its perfectly likely your baby may cry (and scream) for the first 24hrs they're home. So long as nothing is medically wrong, this is a normal part of the adjustment period particularly if they've been in hospital for long as it was the only environment they know. Try not to stress too much (you will anyway!) And consider spending the first day in one room to help them adjust gradually.

Forget housework you need to concentrate on you and baby and if you do have visitors they should realise you have just bought home a very demanding little person that hardly lets you sleep so they shouldn't expect you to have a show home! Let others help you.

Mine is strange, for me I had to take Harry out the first day he was at home or I was scared I would never leave the house. 

General advice for bringing any baby home - put a note on the door saying if you want visitors or not - some people just turn up!!!


Limit visitors! You need time to settle in as a family without worrying whether you have enough milk for tea for guests & to be able to live in your pyjamas for a while.

Relax, switch phones off and enjoy your baby. Take-away's can be your friend as can on-line food shopping. and remember that you can say no to visit requests, you dont have to see people if you dont want to.

I think the overall theme here is to relax, to get to know your baby, and to take ownership back, limit your visitors, decide what works for you as a family. 


Tuesday 24 July 2012

Colour Me in Rice Krispies #ColourMeinRK

We are potty training this week, so looking for lots of activities to keep us busy that don't require us to put too many clothes on, or stray too far from wee receptacles.

The kind folk at Rice Krispies sent us a huge box of Rice Krispies and some lovely pens and the perennial favourite glitter glue, friend of toddlers everywhere, and nemesis of mums!


We lugged said box of Rice Krispies, and the pens over to Luxembourg and Germany, unfortunately our holiday plans went a little awry and we didn't get a chance to work on the box by the banks of the Mosel or the Rhine, so Bury it is!

Joseph is just discovering the delights of colouring in, and he and I had an enjoyable hour tackling the box! Staying within the lines is totally optional of course. He loved the colour change stamp pens and gave Snap some very groovy holiday trousers.

We've been checking out the Rice Krispies recipes, and perhaps we'll do another post about our cooking exploits another day. Just as soon as I've cleaned up the glitter glue fom every kitchen surface!

Our entry!

I received a box of Rice Krispies and a pen set for this challenge set by Britmums in conjunction with Kellog's Rice Krispies.

Monday 23 July 2012


We are home. Yesterday we arrived back in Manchester after a week away in Germany. Thank you to my lovely guest posters for looking after my blog so beautifully whilst I was away, and to my readers I hope you enjoyed hearing their voices, and truly hope you have found some new blogs to follow.

Yesterday was poignant for me. The 22nd July 2009 was Joseph's first full day at home with us. I guess for a non NICU parent it's hard to appreciate the significance of that date to me. I will never know if I approached our NICU journey the "right" way, and I am not so sure there is any right or wrong way, but I never thought about taking Joseph home. I never thought about when it might be, my only little goal was not to be there 100 days! I just focussed on each little milestone.

When we finally were told that we could take Joseph home, I burst into tears. I just never truly thought the day would ever come. I never dared think about it! So every year, I look back at this time with amazement that we went through 76 days of Joseph in hospital, and all that it entailed, and finally could get him home where he belonged.

Bringing a baby home isn't always easy, and I thought I would do some posts around this during the week, amongst some other interesting things happening at the moment!

I've also decided to open up to more guest posts. I love reading other people's story, if you would like to tell a story please contact me.

I will leave you all with our holiday song. We heard this song throughout our stay in Germany. It's my new favourite!

Friday 20 July 2012

From Tiny, to Trying

Not long after I started blogging, I discoverd Christina - Mummy Beadzoid on Britmums. I was so excited that there was another "premmie mum" blogger on the block! I really love this post, and I am struggling with Joseph's "threenager" phase too, and that little voice in my head that says "oh but he's your tiny miracle baby". 

I love my daughter, she has real spirit. A real feistiness that makes one mock-sigh, and say, “ooh, she’s such a diva!”  And then I chuckle to myself happy in the knowledge that she is going to be an independent woman, one not to be trifled with.  She fought to come into the world at 27 weeks, and she fought to come home two weeks ahead of ‘due date’ schedule.  Always in a hurry, always determined.  And everyone who knows her, especially her doting, though equally spirited mother, loves that about her.

Diva? Me? I just pulled out my feeding tube!

Well, until recently.  See, I think we got off pretty lightly with the so-called terrible two’s.  Yes, she became a little more cantankerous than she had previously been – or more accurately, better at communicating any displeasure; but on the whole she has remained the same lovely little girl that she has always been – full of smiles and hugs and kindness.  I have loved the age of two, lots of fun and a sense of wonder at how our little lady’s personality develops more with each passing day.  Give me a terrible two over a baby any day.

But now, well, we’re on the verge of three.  The ‘trying threes’.  I had never heard this term before a friend used it in my presence, probably to describe the new level of challenging her daughter had become.  I’ll be honest, I thought, ‘well, that’s your daughter.  And lovely though your daughter is, my daughter will never have such tantrums or answer me back in such a cheeky way’. Ha! 

Approximately two weeks ago my daughter became the devil.  Don’t get me wrong, for the most part she is still the same lovely little girl who comes and demands a cuddle before planting a big snotty kiss on me (yum), but ohhhh the answering back, ohhhh the defiance.  Where did this little monster come from and can we please go back to a previous restore point and forget the last two weeks ever happened?  Please?

Disciplining a child is not a difficult task for me.  I’m a teacher of ‘big ones’ and I am more than happy to let them know of my displeasure in the strongest possible terms.  Indeed I once had a year 9 form group so terrified of me that their teachers used me as leverage to get them to behave in their lessons.  And this was when I was an NQT in charge of a form that had been notorious in their unmanageability.  I am good with the iron rod – and without shouting, I don’t need to.  So yes, I too little lady am not to be trifled with.  Except…. Except….

Well, you were born really early weren’t you?  You were a tiny little birdlike creature and we didn’t know if you would live or die.  You did your bit; you fought, and it became apparent that you would thrive.  But the protective feelings remained and I swore I would do my very best for you.  I swore I would be your parent and your friend (though not in that tragic “I’m a cool mum!” kind of way) and I could never imagine thinking bad things about you.  I certainly would never shout at you.

But then… then you started engaging me in tugs of wars when I needed to take something from you that youreally shouldn’t have. Then you started shouting “No!” and “Stop talking!” not only at us, but also your grandparents.  And refusing to do things, like walk past the magazines in Tesco; or let me fasten the car seat “No, Mummy! Don’t WANT it!” you would hiss.  And you threw the mother of all tantrums all the way up the motorway when mummy was already stressed, simply because I took a plastic whistle off you, because mummy really can’t have the alarming shrill racket while she’s driving.  You threw a million and one other tantrums in the space of two or three weeks that you never would have done, but a month ago.  You have really tried my patience.

And so on occasion I have lost my rag.  I have shouted.  I never shout (well, not much) But I did. I shouted. At you. Then I felt so so guilty. Because…. you were so tiny.  You might not be here.  You might have suffered disabilities as a result of your prematurity. What if those brain bleeds had not corrected themselves?  What if the heart valve they thought might not close actually hadn’t?  What if the RSV had claimed your 3 day old little life before I got the chance to know you properly?  What if?

But none of those things came to pass.  You are well, and I am one of the luckiest mums alive.  And there is not a day goes by where I am not thankful for it.  So the biggest challenge for this mum of an almost three year old ex-prem is being the parent who must be strong and raise her child as I would have done any other; to have manners, be respectful, non-brat-like, and not be tempted to excuse unacceptable behaviour because, well, you were born so tiny.  

Christina is a secondary/sixth-form teacher and mum to an ex-27 weeker.  She blogs as Beadzoid, campaigns for Bliss, the premature baby charity and is a committee member of the Grace Research Fund, a local Warwickshire based charity which specialises in commissioning research in perinatal and neonatal issues. 

Thursday 19 July 2012

Bringing Up Children to Know About Their Eldest Brother

I feel very priveleged to have Danielle join us today. I first came across Danielle's blog through Twitter. When I first read R's story I felt so sad, and almost guilty, his story is very similar to Joseph's, with one big and important difference. R did not come home. This is the reality of pre eclampsia, it can devastate families. I love Danielle's gentleness and kindness and her spirit comes through so strongly in her blog. I do hope you enjoy this post (please have tissues ready) and follow Danielle's blog.

R was our first born child and after his death we vowed to make sure he wouldn’t be forgotten and that he would always remain a huge part of our family life.

We are very lucky in that our whole extended family all think in the same way and as such his name is mentioned at regular intervals and he is known by all his cousins even if they were born after R had died.
His cousin S who was born just a couple of months before R drew pictures of him on his school work and wrote about how his cousin R was in heaven- his picture had R on a hospital bed with a beautiful big smile.  

My Sister in law was worried I might be upset at the drawing but in fact I loved it and even more loved that at just 7 years old R is an important member of his family albeit an absent one.

K and Buster have always known they have a big brother who died.  They talk about him most days and the questions we have range from:

·         Why did R die?
·         How did R die?
·         When is R coming back?
·         Why can’t we see R?
·         How did R get to heaven?
·         Did you see the angles when they brought R to heaven?
·         Is R still sick in heaven?
·         Is R playing with great granda Micky in heaven?
·         Does R like lollies in heaven?

We answer all questions as best we can and often MrR and I share a sad smile at the same time.

We try to make R’s birthday and anniversary into celebrations we go on family day’s out and make sure to spend the day laughing and talking about him rather than being down and depressed.

On his last birthday we went to his garden (grave) and Buster kept walking about and when asked what was wrong he asked ‘when is R going to meet us here’ he assumed R was coming back and we would see him at the garden.

In my interview with Buster you can hear he states at the end that he loves daddy, mummy and R (he uses his full name) and K although not recorded said the same though she included Buster, the dog and the fish too.
I have recorded K talking about R in the video below, Buster wanted included too but had fallen asleep!

As you can see R has and will never be forgotten and is remembered with love and normally laughter.  It does get easier and in talking about your child it helps to know they are still loved. 

 Danielle writes the beautiful twopointfourchildren. Learning to live, laugh and enjoy life after losing our son, showing that life doesn't have to stop and you can go forward and yet never forget .