Wednesday, February 29

The Fear.

I don't really want to write another down hearted post again after yesterday's weigh in, but Wriggles has got a sniffle.
I know, I know. About 90% of babies and children and a large population of adults right now have a sniffle. If it is not one bug, it is the other bug doing the rounds. Basically, it's still technically winter and everyone has the lurgy or if they are lucky, is just getting over it.

It has been months, five long months in fact since the last bug. But hearing her snuffle and cough is enough to set my adrenaline cursing round my body and reaching for the holdall which I have always used as the Hospital Bag. On autopilot, I reach for the phones to check they are charged and that I still have the out-of-hours doctor and NHS Direct stored. I panic; have I got enough cash for a taxi just in case? Last spring to autumn I always had spare money in the house as bundling an ill baby into a taxi headed for the nearest A&E became a weekend hobby. I knew the postcode to the doctors surgery by heart and could recite all medical history and current medication in seconds.

Tuesday, February 28

110

Wriggles has been up to her tricks again and in just over a month has lost 110g.

This is not the best news. She has dropped a centile for both actual and corrected age on the sacred growth chart and although she at least is still on the blasted graph, if she gets a little bit excited or hiccupy, you can see her ribs quite clearly, which I am not particularly enchanted about.

I honestly would not be one of those fretting mothers who anxiously plot each milestone, centimetre and milligramme if it wasn't for being under a handful of consultants and therapists (Wriggles, not me) but to a large extent, I have to do as they advise/say and they say she needs to be going in one direction: up.  The main two problems are a) chronic lung disease, due to extended ventilation and dependence on oxygen. Although she no longer requires help with breathing and can sufficiently oxygenate herself, she still works harder than the average child and thus it impacts on her growth. Apparently it can on energy levels too but no one has told Wriggles this, hence the nickname 'Wriggles'.

Sunday, February 26

Kangaroo Care

One of my biggest regrets about Wriggles' stay in NICU/SCBU was the Kangaroo Care, or rather lack ok it.

Kangaroo Care is essentially skin-to-skin, and consists of popping a baby down your jumper or similar. If you want to fast-track your relationship with a nurse, this is a great way to get them fumbling around your bra as they rescue little limbs and caught up wires. You won't feel shy asking for help after that with them! Depending on the gestation and size of your baby, they may still be very small and likely to potentially get lost inside your clothes. The first time I did it, I lost count of the amount of times that poor Lisa, the nurse, had to rescue Wriggles from inside my dress. She would have been about 30-31 weeks and was still a titch. It very much improved my relationship with Lisa though!

Kangaroo Care has many great benefits for premature babies; the heat from the parent's body means that they do not have to struggle maintaining their temperatures thus saving precious calories, deeper and longer sleep can be established, it is comfort and security for both parties,

8/52






 Silent Sunday

Saturday, February 25

Silly fibs and naughty fibs

The wonderful Snoo and Me has been revealing some extraordinary lies that her frankly worm-sounding ex spun, and has invited us all to join in the fun in fibs that we have been told. Although these are not terrifically juicy, here I some I have dug up that I have been told and told myself in the past, that range from the ridiculous to the obvious, yet still annoying.


1. My school friend Jenny: "I once ran over a cow in a combine harvester"
Yes, you read that right. And she wanted us all to believe her. The last time I saw her, a few years ago, she was still swearing blind that this was true. Although the combine harvester had changed to tractor. I really wish that I could remember some of the other beauties that she came out with, but she was one of those people that compulsively made things up to be the centre of attention. This was her signature fib though. After leaving school, we both went to the same art college but quickly drifted apart. A few weeks in, I overheard a conversation in the union bar, "I met this proper rad girl. Ran over a cow in a combine harvester she said...." "Noooooo mate?! Really?!" "Yeah, hard as nails."

Breastfeeding, by a Bottle-Feeder

Oh, the vicious debate of motherhood. Breast or bottle.
It's a choice that in some circles can define you and your style and integrity of motherhood and parenting. I am always very surprised at the relatively small numbers of breastfeeding mothers given the promotion of it's well being for your baby and advice of organisations like the World Health Organisation.
Then again, I am one of the non-breastfeeders, although this decision was not deliberate but a result of some complicated circumstances that ended up with my milk drying up before I came to a firm decision. I am comfortable with the fact that I bottlefeed and it has suited me and my child as it means that as a single parent I could return to part-time work confident my child would still feed correctly and as she has grown older, her health requirements are a little outside the box and bottle feeding has allowed us some breakthrough with oral motor skills and a way of giving her a more suitable formula and medication.

Living with Oral Aversion

Oral aversion is hard. Really hard. It strips away one of the most natural things a parent does for and subsequently teaches their child: to eat.

Oral aversion is defined as "reluctance or refusal to eat". It can arise from a number of sources, and often from more than one. It responds well to therapy but does so at snails pace. The reluctance or refusal is not a generic toddler phase of bad manners or defiance; it is linked with oral trauma and thus is an intense experience for the child that literally stops them from eating, swallowing, trying things or allowing textures nearby the face. It must be very frustrating if your child only eats Quavers, cucumber sandwiches and Kit Kats but that is not quite oral aversion.

This post by Life with Jack sums up perfectly much of how I feel about it. Having not yet encountered someone face to face with this problem, the internet has been a lifeline of information and hope for the future. It has given me reasssurance and I have "spoken" virtually to other parents who have been there, done that and got the sodding t-shirt. This has meant a lot, as it is one of those issues that is hard for some people to truly understand and therefore can be quite isolating. It is easy to say airily "Oh they'll get there in the end" but when your child is only on fluids or is reliant on tube feeding whilst around you others are scoffing three meals a day of a variety of textures and tastes, it can feel like another world. And the reality is that it is not going to change fast or go away over night. It is not solved by intense hunger or withholding "safe" or favoured items.

Friday, February 24

Art (a former life)

I spent my former life as an art student for 5 years previous to having Wriggles. One year doing a foundation course at my local art college and 4 years at universtuding studying Fine Art at degree level. Whilst there, aside from getting covered in paint, spending my student loan on double-sided sticky tape, coffee and cake from the Art Cafe (a dubious cubby hole selling homemade baked wares and mildly dodgy coffee and toasties to fundraise for the annual degree show) and downing gin in mugs, I discovered print making which I adored. I used it for my final show and though have not strayed near a printing press or screenbed since, I do collect and covet other printmakers work. May bookcase has rather a lot of art books and my drawers are jammed packed full of postcards, greetings cards and review snippets. I only own one genuine print, a lino print by Hannah Firmin, but when I win the lottery, my abode will be full of beautiful and coloured prints! What I love about print is the illustrative styles and combinations of colour and pattern. One artist I adore who brings this together beautifully is contemporary printmaker Alice Melvin.


Thursday, February 23

De-Cluttering

I am having a clear-out or clear-up.
I have always been a perpetually messy sort and I am slightly ashamed to let people into my house.


I find sort-outs quite therapeutic too and a little trip down memory lane, finding parts of you that you might have forgotten about. I have a (very large) memory box where treasured birthday cards, postcards, rambling letters and funny post-it notes from friends go. I also have the only physical token of my albeit brief courtship with Wriggles' father, when on our first date after a few glasses of wine we decided to compare handwriting on a scrap of paper. Funny the things you keep. When after a while he disappeared into the ether, or at least, stopping calling me, I meant to throw it out. Now I'm quite glad, not because I have particularly sentimental feelings about or for him, but that there is some evidence that we at least met in a not-just-procreating sense.


Amongst my mountains of things, I also have like every parent, A LOT of baby items. It always amazes me how one small person can take up so much room and acquire so many things in such a short space of time. But acquire they do! And grow, relatively quickly. I now have amongst other things a baby-seat, a moses basket and rocker, a large pram, a sling, a slightly faulty pushchair and a baby bath as well as probably hundreds of clothes, ranging from premature sizes up until 6-12 months. Some is millionth hand already, but most of it is in pretty good condition. And it is taking up room. I have already sorted out some things which have gone into a memory box for Wriggles, and kept first tiny gloves and favourite jumpers, but I am still left with a multitude of things and no one small enough to use them. Recently I began working with Tiny Lives and their Nearly New sales that raise money to support the neonatal unit where Wriggles spent the first two months of her life. In the past I have donated and sold items that I had no use for, and now I am wondering whether it is time to clear out other bits and bobs that I simply have no use for anymore. Many things have had a lot of wear as Wriggles was and is, still a titch, so over the 17 months or 15 that she has been at home with me, she still uses many things more suitable for a 9 month old. 

Big feet little feet

I've never been one of those stereotypical girls obsessed with shoes who squeals with glee everytime sparkly footwear comes into vision. I do have favourite shoes though which I were until they literally fall to pieces or I concede defeat. As a student, my mum would physically bin shoes of mine that she deemed "dead" when I went home. One time I had to travel back wearing some very old school shoes as my Converse had mysteriously "disappeared" during the course of the visit.

Tuesday, February 21

Survival

My family, I reckon, are born fighters. 


Between my immediate family between us we have survived pneumonia (repeatedly and in varying severity), multiple organ failure, sepsis, cardiac arrest and a stroke. The worst culprits are my father and my daughter. 


Three years ago my father wound up in Intensive Care after taking a turn for the worst with what his GP thought was gastric flu. After progressively deteriorating, he was taken to our local hospital where they grew increasingly concerned. Gastric flu or not, they were concerned about his heart and decided to transfer him to a larger hospital with an outstanding surgical team. It happened very quickly; I was travelling down from university as fast as I could and throughout the few hours of my trip he was sedated to preserve his energy and I arrived just before the ambulance did, to transfer him to London up the motorway. We were prepped as to his immediate emergency surgery to repair his heart, which had been damaged by staphylococcus and not gastric flu at all, that was ulcerating and eating away at the muscle. There was a 33% chance of success, but without it, the doctor gave him 24-48 hours. That train journey my mum, sister and myself took was fraught. We were on a knife edge and raced to get to St Thomas' hospital. Once there, we discovered my father was not. We were distraught and immediately thought the worst. A phone call revealed a delay; the local hospital wanted to stabilise him before starting out to give him the best chance.

Sunday, February 19

Celebration

Crack open the bubbly, dust off the best cutlery (wait, I don't have best cutlery. Better give the normal stuff a swizzle under the tap then) and find your silver teapots!

WRIGGLES IS CRAWLING!!!!!

In a week she has nailed crawling, clapping, shouting down a cardboard tube and attempting to copy song actions to 'Wind the Bobbin'.

I know how infernal it is when parents boast of their precious offspring's achievements and how grating it is after a bad day when you are seething having tripped over the millionth Mega-Blok but look, I am allowed a little smug moment. Alright, quite a large smug moment.

All milestones are precious and although having only had one child, I cannot say for parents of "straightforward" children, but it means so much. It's one little less thing on my mind. Having a premature baby, or one that is sick or different for want of a better word gives things a new perspective both for their lives and your expectations. It is not to say that parents of such children love them more or have a better appreciation than parents without this experience, but I do think they have an acute awareness of each little thing. We have been inundated with medical and developmental knowledge, far beyond the literature that is normally given to parents. We have seen struggle. We have had days when we have to contemplate that we might not see our children crawl; not because they can't but because they might not be there. We also might have to come to terms with the fact some of their abilities may be impaired, so every little thing is a joy.

7/52

Silent Sunday
TheBoyandMe's 366 Linky

Thursday, February 16

Grump

Today is a fed up day. One of those where there is no apparent rhyme or reason why but you just feel a bit pants. And that is me now.

Partly I feel a bit deflated after my family left after a weekend visit, and a little bit horrified at myself that within hours the place looked a tip again and I was lacking any energy or motivation to do pretty much anything. I had a nap on the rug next to Wriggles who battered my ear with a toy tambourine. She is very much trying to be on the move and has developed a system of pushing herself backwards on all fours and then sitting up, swivelling on her bottom and reaching for things before going backwards and getting stuck under the sofa/bookcase/dining chair again. It is lovely but a little bit of me misses having a baby happy to have cuddles and play all day together. I think as much of this is I simply do not know what to do with myself when she is blatantly happy amusing herself.

Partly I am a bit miffed that an attempt to try and come off/cut down on anti-depressants has ended with a huge fail and a big blunt realisation that if I want to be a good mummy, an interested daughter and friend, an attentive worker and a human being then they are my one option for the time being. I am lucky in that they suit me with no side effects and importantly, work, but part of me resents that without them I just can't function day after day. I become a big heap of bluuuuurggghggmf that can't sleep, eat or muster up any interest in anything whatsoever. Some days, that includes my daughter, and that breaks my heart.

Partly I am beginning (for the millionth time) to get naffed off with questions about dear Wriggles' development and effects of prematurity. It's a constant barrage of 
"Is she crawling/walking/talking/eating yet?" to which to answer is NO. Well apart from crawling; that is very nearly because she is very very clever. When I have to explain we have commitments to go to physio and still have regular consultant input as well as other services, people look at me as if I am mad. I am not an over anxious mother, I want to scream at them. I fully believe she will "get there in her own time" but the fact remains, there are some lumps and bumps to be smoothed out and the medical services believe they should be involved. Do you think I LIKE spending time in outpatients? Do you think I find it FUN? Do you think we go to things JUST BECAUSE? And how exactly do you know it will be alright in the end? Do you have a crystal ball? If so, please give it to me to give me some respite from a little bit of worry. It may all look easy peasy but nothing is straight forward. Our beloved childminder is retiring in the summer and I am looking at nurseries which has turned into a bit of an exciting game as Wriggles' comes under some "additional needs" due to not eating solids, having physiotherapy for gross motor skills and we are awaiting a referral for speech and language input also. She is being fitted for gaiters to help her legs and hips and will be assessed to see if her left leg may need a splint as it is a bit all over the place. Sometimes I feel like life is just waiting as I know the consultants have not ruled anything in or out regarding movement but I do know they are keen to book her for an MRI scan around her second birthday. And what a treat that will be. Now some time has elapsed people forget and say things that niggle me; preconceptions about prematurity, disability, mothering skills. Stereotypes about single parents on low incomes and their abilities to bring children up; "oh but we don't mean you". 

Partly, I am just grumpy today.

Wednesday, February 15

Other Mums

For quite a while, I was a bit suspicious of other parents. They did everything better and had cleaner more stimulated children. They had the secrets to Good Parenting and I could never join their ranks.


Then I began to notice that they had bags under their eyes too. And odd socks. And a baked bean stuck their jumpers. And a look of exasperation when their well behaved child started up. And occasionally, said well behaved child would lob a petit filous pot across the room. I noticed that some parents looked sad, and some looked wary. Some worn out, and many just really, really looking for a friendly face and a cup of coffee. And maybe a bit of cake. No, definitely a bit of cake. And to hell with the organic, sugar-free, slimming plan.


Other parents can be a lifeline in times of need. And times of need can be anything from One Of Those Days to a true crisis point. Other parents can act as a mirror to reflect your own needs and desires and they can demonstrate understanding that many times can only come from someone who truly knows how you are feeling. They are the people that are there to help celebrate the highs and commiserate the lows. They will be the ones helping to pack up party-bags to delegating exactly whose fault was the hair pulling. Although my own parent network is very fledgling, I know how vital it is. Even if you have just one mummy friend, they can make the difference. When I was growing up, my mum was part of a strong NCT local network that gave her a circle of fiercely protective biscuit-wielding friends that still form a substantial tower of support and provided both my and my sister with lifelong friends also. 


Having like-minded fellow parents was for me tested when I reached my own crisis points, in neonatal and Paediatric Intensive Care. Whilst in neonatal I had no parent friends and was not at a point whereby I had the emotional capacity or time to start seeking them out. Practically it would have just been a bit weird, turning up to a baby group alone with nothing but a picture of a tiny poorly baby. I was however put in touch with another younger mum, just as we went home. Her baby was a term baby who had spent a stint on SCBU after birth and she was also alone in her former circle of friends, being the first to foray into the murky world of parenthood. She became my only mum-friend and a tentative one at that for a long time. However, I came into contact with many parents over the following months, mostly in the form of support workers. There were a group of women I met who directly influenced me and gave me the strength to acknowledge that I could do this. All the women were older than me and in entirely different circumstances, they only came into my life in a professional capacity, but their words touched me. Some I met just once, some handful of times, two I still keep in contact with now on a more personal level. Anna-Bet, Anne, Fiona, Mel, Bridie and Vicky, I don't think you will ever know what an impact you made on me for the better. Each of you shared one similar aspect of the early days of my motherhood that made me know that there was a light at the end of the tunnel. Be it a fellow NICU experience, other single parents, other young parents, another traumatic birth, a fighting spirit; it made me feel normal which was something I desperately felt anything but.


Over the months, I tentatively began to go into the big wide world and meet other new mums. The friendships are still very much developing but they restore my confidence in a way that nothing else can. Other mums fight as well, very hard for each other. A nurse I came into contact with on PICU who looked after my daughter saw I was struggling in accepting where I fitted into the world and doubting my parenting abilities and went above and beyond her job to try and help me. She wasn't paid for it and it was not her job description but she understood, not just my situation, but me personally. She was a world apart from me, her home life could not have been more different, but she was so protective and let me know that I was one of thousands of struggling mums. Words can make such a difference. And now I am dipping my toe into the world of parent-blogging. It started out as a personal way of processing my feelings following a whirlwind that was the beginning of parenthood, and ended up being another form of sanity saving. Of course the internet has much to answer for, but it connects you to people you would never meet otherwise, not least for geographic reasons, who make you feel that little bit more normal and able. Likewise, I am beginning to meet other mums through neonatal support groups. There is nothing like being able to sit with a stranger, with no words, but a deep connected sense of understanding. It can be like a secret language. You know too. 
Reassurance and support that you cannot put a price on.


Do Something Yummy and help out not just children who deserve a hand, bur their parents too. No one wants to suffer or to admit they would quite like a spot of help, but we all are so glad when it is there. If your child is having a rough time, you want to be mummy, not a carer. And sometimes, you need a break. Just enough to put the kettle up, or your head down for a nap. I have been in recipient of respite help before and it makes such a difference. No one ever thinks it will be them, but everyday 10 families are told their child has cancer. And I bet none of them saw it coming.


"Do something yummy because every mummy deserves some fun"

Tuesday, February 14

Single

Being a single parent is...

Tough
Exhausting
Consuming
Full of late nights
Absent of lie-ins
Twice the amount of sick and runny noses
Anxious
Lonely
Expensive
Without holidays
Hard work
Fierce
An emotional struggle
A fight to be heard
A desire to do the best
Twice the work
Twice the rewards
(And a bit more)
Competance
An achievement beyond anything esle
Pride in bucketloads
Something I wouldn't change for the world.

I may have listed more negatives than positives, but each positive is worth a million times over a negative. 
Yes it's tough. Yes it can be lonely at times. Yes it really can be a struggle finanically. Yes it is demeaning and degrading to come up against people's preconceptions and judgements. 
But parenting full stop is not purely a barrel of laughs whether you are married, cohabiting, separated, estranged or alone. Parents should be celebrated, especially any who have ever had to struggle, like single parents. We make too many assumptions. Parents should have a hand extended not bitten off. 
What makes it worth it is the satisfaction of bringing up children and getting a cuddle at the end of a day. I know for me, after a tough day, a cuddle and looking into my baby's eyes affirms why I do it. Because I love her beyond anything, pure and simple, and I will walk through fire and ice for her wellbeing.

Head over to Netmums this week where it is Single Parents Week and show your support.

Inspired: Room for a Wriggles

This weekend, I've been having a super clear and sort out of the flat. Until now, I have shacked up with Wriggles in her bedroom. When we first moved, she was only just 5 months corrected and had just had a major infection, so I slept in the same room to adhere to SIDS advice and for my peace of mind. As she was frequently ill, I stayed and by the time we emerged into the healthier period we are in now, with the worst behind us, I have stayed out of convenience. One of the most annoying things about being a singleton is that you need to wait for kindly friends to pop over to give a hand with moving heavy furniture or DIY jobs!

But. Moving time is here. We both now have our own bedrooms and to celebrate, I would like to jazz the neutral walls up a touch (neutral is an understatement. They are generic cheap-as-chips magnolia with sandpapery cheap sludge colour carpet, as can be found in most inexpensively kitted out places by landlords trying to cut corners!) and give our rooms some personality. I love the Inspired linky that Dear Beautiful Boy has been running, so joining in, here are some of the items that I am coveting and drawing inspiration from to give Wriggles a room fit for a queen.

I love this bold tree print; it is a fabric from Swedish favourites Ikea. Not only is it affordable at £4.99 a metre but it is thicker than many cottons, so I have been thinking about attempting to whizz up some curtains. Note; "attempting" is key here. In theory, I know how to run up curtains having watched Kirsty Allsopp's 'Handmade Home' programme and internet tutorials, how I would actually fare is another matter. Oh and that time thing to. But I would like to!
The room has a short but very wide window so any curtain will be quite a feature. I do not want a super girly room brimming  over with fairies and pink, so would like to keep with more green and blue palette.

And while I'm looking at birds, I have utterly fallen in love with this owl in a teacup print by illustrator Heather Scott. Heather sells on Etsy and Folksy under Sparklehen. Her prints are vibrant and whimsical and I already have several bought over time. The teacup reminds me slightly of Alice in Wonderland, and the colours are perfect. Who wouldn't want to share a tea party with a stray owl?! Loons. And it's not strictly a room accessory but I'm sure Wriggles could make room for this crochet owl in her cot!

 Being in a rented flat, it is too much faff to start painting and wallpapering, so these new-fangled wall stickers sound a good plan of transforming a wall and adding some colour. Keeping with an emerging woodland vibe, I saw these designs on Not On The Highstreet which caught my eye.

Whilst I was also browsing there, I saw this rabbit lamp by Little Ella James. Wriggles is not scared of the dark and has rarely slept in anything lighter than pitch black, so for the moment I doubt a nightlight would be needed, but it is so sweet. Maybe I could "borrow" it for the time being! I saw these fabric Love Birds which look adorable perched on a branch (surely attaching a branch to a wall must be easy?)


So all I need to do now is win the lottery and channel my inner Laurence Llewelyn Bowen. Easy! Hop over to Lucy's blog and see what anyone else has been looking at this week.



Single Mummy-dom on Valentine's Day

However much you may like to, it's pretty hard to ignore it is Valentine's Day. Unless you are a hermit living in the hills with only goats as company, you will at least have an inkling about a nauseatingly commercial day and that there are more people holding hands than normal.

I don't actually mind.

When I was a singleton, I was quite against Valentine's day. Well, that was if I didn't have plans involving a boy, in which case it was next only to birthdays and Christmas. It seemed a way of spinning out money and encouraging people to rub salt into the single person's wounds. I would do things with girl friends, in the tongue-in-cheek way. There was one quite lovely year at university where my friend Rachel and I went to the beach for a walk and then had dinner. We bought a cheap bottle of Cava and drank it out of mugs in our art studios and hunted out some half-price heart shaped chocolates. I can't recall but I imagine we then just got pissed in the pub later and ranted about men and how come they were so bloody, well, men-like.

Since having a child, I don't even have that. Many friends are married or in stable relationships. They have their chosen partner to be soppy with. Friends not quite at that stage are busy with enjoying life, and I see them less and less. Not deliberatley, but life moves on. I no longer have the freedom to dance the night away and join them in berating the latest dastardly catch over dinner. My trips out revolve around wherever has space for a buggy and doesn't mind a backdrop of shrieking baby. Also, I am a single mummy. My ex-partner has very little involvement and our lives though do cross over, are infrequent and though civil, not heartfelt. Don't get me wrong, I have days when I am bitter and slightly devasted that things did not turn out like the stuff of dreams, but most days I just don't care.

The thing is, I quite like my life on my own.
I have found true love. It might not be the stuff that is traditionally celebrated on 14th February, but something I celebrate day in and day out. And I haven't quite given up hope. At heart, I am still a romantic. I am cyncial that Mr Darcy will come riding through my front door, wet shirt and all, but it's nice to dream. Whether he does or not, I am at peace with being on my lonesome. Today is just another day. Do I wish someone had brought me breakfast in bed and some red roses? Yes. Do I wish that I had a loving partner by my side to share my highs and my lows? Yes. Would I say no to physical affection? No. Do I wish my child was brought into the world in true love as a union of two lovers? Of course. But, life doesn't always turn out how you expect it to.

And right now, I think I'll take waking up to a dribbly toothy grin.

Love


 
 
Put quite simply, nothing makes me happier than looking into this face day in and
day out.
There were lots of things I thought I loved, Wriggles, until I met you.
Chocolate biscuits for one thing.
But then I learnt what true loves means, and to use a cliche, I am nothing with you 
now.
 
 I am sharing an image of something I love with Love All Blogs and Albelli. I was going
 to try and be slightly less obvious, but when I looked through all the pictures I have 
 ever taken, there is nothing better than my small Wriggly person, so here she is.
 Superior to a KitKat and better than hobnobs.
 
 

Saturday, February 11

Don't they know?

My parents have come up to visit. It's lovely, it really is. And yet, I feel so weighed down by their "helpful" comments. It makes me feel like I'm doing it All Wrong.
Do you have any bleach? That [insert name of object] has seen better days.
Hand me a cloth, I just have to clean this/that/everything.
Don't you think it would be easier if you took rubbish out with carrier bags every day?
You don't want to be doing that.
I think it would better this way.

I'm doing my best, I want to scream. I know my home is a bit fuzzy round the edges, I know I could do better, I know I need to do some things differently, but I'm trying. I'm really really trying.
I've been really depressed the last six months or so. Some days, it is all I can do to make sure I eat. Or get up. Or move. Or talk to someone-anyone. I can care for Wriggles by the back of my hand but me? Me who? I'd stopped caring. Me just didn't feature. Anything outside of Wriggles directly simply didn't feature. I could barely sleep, feed or think. I had no concentration, no feelings about anything. No sense of pride, dignity, cleanliness. I did what I could and hid the rest. It was shit. I felt a failure. Don't you know how debilitating it is? It's not just a word or excuse, it's anything but flippant. It's a weight that drags you down. 
I'm getting better now, I am. But it still lingers. And even on good days, I'm still making up time and tidying up from the mess, literal and metaphorical, I slid into. I'm still trying to claw back everything. I'm still trying to find an image other than fear of loosing my daughter and desperately trying to prove I'm capable.
That is why the washing up waits.
Don't you understand?
I struggled. I was ill and a mummy and working. I carried on even when I wanted to hide away. I did it on my own because I had too.
Giving my daughter a cuddle is a more important. For both of us. Possibly more me. She saves me and takes me back to life.

Please give me a break. 
I know you care, I just need to learn how to myself again.

Friday, February 10

Unawares

Only this week, I began to write about how I have been suffering, and beating (I hope) depression since giving birth. It isn't gone away but it has been much more manageable over the last month. The sneaky thing about depression though, is you never quite know when it's going to tackle you back down. 

Yesterday I woke up and it was as if I was waking within a dream. And not a nice one. Adrenaline coarsed through my veins, my body poised on the edge of a panic attack and I simply felt nothing. It was as if I was looking down on my life; it felt like I was no longer living it. That girl going about her daily business and taking care of the baby-it didn't seem to be me. I felt drained, ambivalent and for no explicable or rational reason, a failure. It was if a naughty cricket was living on my shoulder whispering things in my ear. I couldn't barely summon the energy to engage with my beautiful girl who happily dismantled a once (vaguely) tidy living room into chaos and leafed through all the noisiest books. I wanted to hold out and press her tightly to me, to laugh and play and sing. I wanted to curl up and hide from everyone and everything and not to have to think anymore.

Today is a much better day. I woke up and auto-pilot lifted the squalling baby trying to crawl through the cot bars, and headed into the living room. As everyday, I switched the radio and kettle on, poured milk for Wriggles and coffee for me. I showered, and dressed us both and we even got the bus on time for our weekly hydrotherapy session. It has been much better than yesterday. I've been in the moment, still tired, but manageably. I sang and laughed and played horses and tickled and kissed and bathed.

I just wish this blasted feelings would go away for good.

Wednesday, February 8

A New Start


I love this picture; to me this speaks of a new start. It is not obvious to anyone but me, but this was taken in my new flat (aka, my home). The only furniture is Wriggles' bouncy chair and a wooden crate pretending to be a coffee table; there are not yet any appliances like a cooker or washing machine, the walls are bare and I think this was taken before the official removal van and moving in day.

When Wriggles was born prematurely, I had not yet had time to sort out moving from a professional flat share into a more family friendly private space, as she came so quickly. I would have had 3 months further to play with if she had stayed inside but it was not to be. Unfortunately things became complicated as she came home on oxygen and so it was with trepidation, that I took her back to what resembled a student flat that I had to share. During the few months I was there, I became very desperate. More than anything, I ached for some precious privacy with my baby.

Finally, somewhere came up. Before moving in came around, we had the Intensive Care shenanigans which brought everything very clearly to me. Once we were out of the danger zone, the hospital felt safe. Although there were people in and out, it was more private and comfortable than my flat. It was bliss being able to shut a door and I dreaded returning home. Thankfully, when I did go back, it was merely days before I could move.  My mum had come up while Wriggles was in hospital and stayed to help us move. She felt closed in on too, and we were so eager to leave to pastures new, that the day before the removal van was booked, we packed large rucksacks and laundry baskets of essentials like the kettle, biscuits, Wriggles' chair and milk, the sterilizer, toys for Wriggles, and an airbed, and got the metro over to the new flat and spent the day in a barren place. We must have looked like lunatics on the platform with binbags of belongings shoved under the pram and on our backs, like refugees. There were ladles sticking out of coat pockets, cushions stuffed in coats and teatowels worn like scarves. It was a cold and drab April morning, but we practically skipped up the road and ran into the bare and empty building. It was bliss. It was so quiet and secret, I felt like I could breathe again. It felt like playing house, proudly organising the few belongings in the bare rooms. We stayed for hours until the sun set and night began to creep in. Reluctantly, we left to put Wriggles to bed, spurred on the the thought of being there the next day. When we moved, it felt as if finally, seven months on from the birth, our life as a family was starting.

That first weekend there, my aunt, uncle and cousin came to help organise the flat. We still had no cooker, washing machine, sofa or chairs, so spent the weekend sat around on the floor, microwaving vats of soup my aunt brought over from her home in Cumbria to eat, inbetween putting up curtain rails and unpacking boxes. We pegged and sellotaped duvets and bin bags as curtains and sat on crates, got lost trying to find Homebase, lived off cups of tea and instant soup-in-a-packet and biscuits, and played and played with Wriggles who adapted marvellously quickly to her new palace. When appliances arrived, they sat in the middle of the floor for weeks like large traffic islands, waiting to the installed. I didn't care one jot. The disorganisation was laughable but yet heavenly.

Having my own space meant the world to me, it meant that finally I could establish a routine, do things as I intended to as a mummy, speak when I wanted to, and deal with everything in my own way. I could ask for help to deal with the depression that had engulfed me, safe in the knowledge that I was allowed to have bad days and that I wasn't under the watchful eyes of people, who had the best of intentions but would never look away. And so I began to find myself as a mummy. With furniture at last.

Tuesday, February 7

Splosh

Dear Wriggles,

I am very proud of you that you are desperately trying to crawl. However. The bath is neither the time nor place for it.
Do you know how slippy a wet baby is?
Very slippy is the answer.
I am also equally proud of your new skill of hauling yourself onto your knees to reach for something, or should I say, just about everything in your sight and everything I thought I had hidden out of your sight (foiled again).
However, like crawling, in a bath is not really the correct place to perfect this.
I am so glad that going to hydrotherapy has given you the confidence in water and that your inquisitive mind is brimming with possibilities, but I assure you that dry land is equally exciting.
I don't know who is the wettest, but I do know who was in the bath. And it wasn't me.
I love that you are such a brave girl when it comes to getting bumps and bruises that you just don't care and will pick yourself up time and time again. It is just a shame that you are quite keen on throwing yourself backwards and onto the side of the bath and trying to climb out of the bath, giving you what I'm pretty sure is the beginnings of a large bruise on your cheek.
What happened to my little baby?
In short, errm, could you please be slightly less of a Wrigglebottom at bathtime?

Lots of love,

One Soggy Mummy xxxxxxxxxxxxxxxx

Loose Marbles

When Wriggles was about 7-nearly-8 months old, it finally dawned on me that it was probably not normal to feel how I did all the time. I did some research and read up on PND and other mental health issues and just wept and wept because it made me accept that I wasn't alone. That thousands of other women, and men, had experienced similar and had been able to do something about it. The relief was huge and when I spoke to my GP who understood, it felt as if a weight had been pulled from my shoulders, leaving me that bit more free to go on.

"Losing your marbles" is quite an apt expression I feel. For me, it did feel as if slowly pieces of me were rolling away, gathering speeding and disappearing into crevices and cracks in the floor. Tiny bubbles of worth, personality and reason, encased for safe-keeping in beautiful shiny glass, rolled off out of reach. They were slippery and looked as if they might be lost forever. Enough to mourn but as each one fledged, too tiny to bother to rescue. 
Until, into the future, one day you stub your toe and come across a forgotten treasure. Tentatively you inspect it, running your fingers over the glossy shell and peer into the wispy colours inside. Preserved is part of you, returned after a journey of loss. Sometimes you might find several at once, sometimes just one and it is months before you even recall that there were others. I am beginning to feel as if I can account for most of my missing marbles and am slowly amassing the blighters and trying to find a Safe Place to put them where they will not roll off again.

When I was in the midst of depression, it felt as if I had lost all of myself, I was just a creature wading through day to day. My feelings were muffled, my thoughts worthless. I could function practically, but I felt alone with no one to hear me. I had lost my compassion to myself and my rationality that allowed me to deal with the everyday and my innermost thoughts. In the daytime, my daughter acted as my rock, weighing me back into life and stopping me from floating away. She bound me to life and made me want to 'get better' and find everything I thought I had lost. When she went to bed and wasn't physically with me, I would fall apart night after night. It's not easy admitting you need help, especially not as an adult with responsibilities. I felt I should know better or be able to give myself a good talking to, to snap back into reality. Oh, if things were that easy! And of course it wasn't that easy merely knowing who or what was my reason for trying to find the light again. I felt like a zombie caring for her some days and my heart continually lived in my mouth on the edge of a panic attack. 


Wriggles is now 17 months old. I still feel anxious and exhausted, but I don't feel desperate. I have found an understanding, both with myself and with depression. It is no-one's fault. It is a thing, not a persona. It is thoughts, not reality.
It is something that can go away and will go away.

Sunday, February 5

Chocolate Tea Party

Recently I wrote about the tough separation that can occur when your child is ill, for the do something yummy campaign. This feeling of distance sadly shaped a lot of my early motherhood and still looms large in my mind now. It has made me both very grateful and also passionate about the support that families need; that I needed back then.

Being separated from your child is hell; I can't think of a way to dress is up. However, the one thing that can make it easier is kindness. Kindness and a bed as near as possible. And this is where the Sick Children's Trust is a light in the dark. One of the best things that they do is operate "Homes from Home." Around England, they have seven houses attached to major hospitals that help over 3,500 families every year. 

No nurse, doctor or professional is normally any substitute for a parent. A parent’s presence is often worth any amount of analgesia, play distraction, interpreters or therapy. Children’s deterioration is normally spotted first by a parent and their recovery vastly enhanced by their presence.”
John Reid, Director of Nursing and Clinical Operations, Sheffield Children’s NHS Trust
 
When Wriggles was in Intensive Care, I was lucky enough to be allocated a room in Crawford House, a 23-bedroomed house on the grounds of the hospital. As well as a variety of bedrooms, it had a lounge, kitchen, bathrooms and laundry room for families staying a while. All in all, I spent eleven days there: it felt a lifeline. However, knowing that I had a bed behind a private door, less than 5 minutes walk from my daughter and a telephone with a direct line to her bedside was a comfort. in fact, it was sanity saving. I knew from Special Care how sapping it is it return home night after night alone, how hard and expensive it is to go in and out and how home comforts mean nothing without your family. Crawford House kept me sane. It kept me on site so that if anything changed, which it would and very suddenly, I could be there immediately. It enabled me to have no limits to my time on the ward; if I wanted to stay into the early hours I could as it was safe to walk down the corridor, across the car park and into bed. No public transport. No drunks. No taxi fares.
In the kitchen we all had a cupboard so we could cook as well as live off hospital sandwiches and all the utensils and crockery were provided. Bath linen was provided and bedding in the rooms, and hairdryers and shavers could be lent out. In short, it was like a holiday cottage, bar the somber mood in the air. None of us were on holiday, we were all parents of very sick children. Some like me were alone, some in pairs, some had their whole family with them. the range of rooms meant that other children could also stay and there was a special playroom to accommodate this. There is no charge to stay, but it costs £27 per room per night to provide this service. I would not have been able to afford this for my stay, there is no question. I was able to give a donation but it was a far cry from the near £300 I would have otherwise owed.

The houses have an 89% occupancy throughout the year, although in the time I stayed it was oversubscribed with a waiting list. The first night my daughter was in Intensive Care there were no beds but both I was reluctant to return home and the nurses were reluctant to let me, as she was so changeable. They snuck me into a spare cubicle on the paediatric ward we had been on previously under the strict premise that if there were any emergency admissions, I was bound for the all-night Costa Coffee. Thankfully the following day I received a call that a bedroom had become free. During my stay, some families were there throughout, others changed every few days. Some families came for operations, some for emergencies. I would estimate at least half of the families were those of a premature baby in the neonatal unit-were I have been just mere months ago. In fact, their latest project is for a large parent's house attached to a large neonatal unit in Cambridge. 'The Rosie Hospital' will help hundreds of families across the East of England and beyond, as sadly many babies are transferred sometimes hundreds of miles to access the medical care they need, often leaving parents uprooted and faced with a several hour long trip every day or an extensive hotel bill.

Why should you help? Because there are no guarantees: no one ever thinks that will be me. But if you have the misfortune to be 'that one', then you jolly well need support. Not want, need. 
So what can you do to help? Many things! You can donate directly, use their shop or take part in The Big Chocolate Tea Party! Chocolate? Tea Party? Yes, thought you'd like it!
Make chocolate things, sell chocolate things, drink tea and have fun! What better way of raising money for a good cause? As the say goes, every penny counts. Just £25 would buy a brick for a new building project or a mere two cupcakes more would buy a night's stay! So what are you waiting for?? Whip out that apron, wash your best teapot and crack on with it!

5/52

Caught in the Act

TheBoyandMe's 366 Linky

Friday, February 3

Brrrrr winter time

Brrr the cold snap is drawing in and I have left my gloves at the office. Silly mummy. Just before winter sets in, I get all excited and start eagerly unearthing woolly knitted items, thermals, slippers and hats from the depths of my wardrobe and Wriggles'. This is her second winter, but feels like her first as last year she was newly-home and teeny tiny, so we stayed in most of the time as she was on oxygen and it was snowing.

So this winter was full of jumpers and fleeces and still-small gloves. The latter did not last long. Wriggles is at the throwing everything stage and I have lost count of how many gloves we have lost over the side of the pushchair. Ditto hats; she will not tolerate things on her head and flings these gleefully into the road.

She does however tolerate her penguin slippers, our favourite winter accessory. These were bought from Next in December and have barely left her feet since. You can tell. They are clearly scruffy, bobbly and grubby: the marks of a well loved item! When not wearing them she will happily throw them about and share at the faces. 


For more diminutive adorable small-people winter accessories, head over to pretty.little.things this week hosted at Mummy, Daddy and Me Makes Three.
 
Showing the penguins off with Great Grandparents

Thursday, February 2

Separation

Imagine your child can't be home with you.

Imagine, just imagine. Imagine leaving your child, having to say goodbye and walk out the door. It's hard isn't it? I'm not talking walk out the door to go to work, to have a haircut, to have five minutes peace, but to walk off for the night and not return until the morning leaving a vulnerable child. I don't have to imagine, I know all too well.

Wriggles, my baby daughter is 16 and a half months old, 488 days. Since the day of her birth, I have spent 72 nights apart from her. That is almost 15% of her lifetime, not being there in the dark hours to attend to her every need. 15% forfeiting motherly duties and feeling helpless and guilt that my child may well be scared, being looked after by strangers. Of those dreadful 72 nights, 61 were spent in Neonatal Intensive Care and then Special Care as a neonate, needing to get to the optimum stage of getting home. The last 11 were while she was 6 months old in Paediatric Intensive Care. Between the remaining 85% of night times, we have spent numerous nights in hospital wards. I don't care to specify numbers or days, all I know is that it is quite a lot. Thankfully, those nights I spent sharing her bedside or cubicle in a pull-down bed, a fold out chair or a camp bed. They were tough, yes, but I was just so grateful to be with her I couldn't give a hoot. Because leaving your child at bedtime and not coming back is, well I can't find words for it.
Bizarre.
Heart-breaking.
Wrenching.
Guilt inducing.
Surreal.
Shameful.
They maybe are a few, but they don't even come close to summing up the well of loneliness and emptiness that you carry with you. Never have you feared silence so much, never have you keenly felt the emptiness of your arms.

There is no etiquette either for how to act. When Wriggles was in Special care and not in any immediate danger, there were the conflicting assumptions: 1) that life had to go on and 2) I should be by her side. It is not physically possible to spend every waking minute beside an incubator, for some parents it is not possible to spend every single day. Yet the times you are not there, you are in a daze, a sort of no-mans land. Time is not as you know it. During the SCBU stint, I had one night where I went to the ballet, taken by a friend who thought I needed distraction (she was right, it turned out to be a crucial night for straightening my thoughts. My premature daughter never left my mind throughout the whole performance, and it was this that really hit home just how much everything meant. As the saying goes, you can run but you can't hide) and for four weeks when I went a little potty, returned to work 20 hours a week in the office. That definitely was a mistake. I could barely concentrate at work, I resented being there however much I needed the money knowing that imminent single-parenthood was around the corner and a long stretch of time off work caring for a child on oxygen, and I ran myself ragged trying to simultaneously be at hospital and office and continuously running (literally, I must have looked mad) between the two, which luckily where a fifteen minute walk apart. I also had to collate all baby items that I had not yet bought in that time and rapidly sort out finances and living space. I would stay at the hospital late into the night and would sleep with a increasingly crumpled photograph of my daughter on my pillow. It was no replacement.
Intensive Care was different; her health was an utterly different state of affairs and the experience was far harder. Again, I knew she was in the best hands and separation was a medical necessity but sleeping away from your critical child is not something that is easy. In fact, sleeping may be an overstatement. Can you imagine going to bed without hope? Waking with a hollow dread-alone? A bed had never seemed bigger and night seemed cruel.

We still share a bedroom now, thankfully back in our cosy flat. At first, after the times apart it was a comfort to share a space and know I was not even metres away from her, but could reach out and brush her cot with my fingers. Now she is getting older, I just have not had time or spare hands to move my bed in my own room and give us both some grown up space. I will do very soon, it is time to move on and put some of the past to rest. The bad times are over, and we pulled through, Wriggles triumphant. Now I sleep every night with my snuffler and I love it, whether through the baby-monitor or my own ears.Until she is old enough for sleepovers or I have gone mad with baby-chatter, I will be uneasy unless we are under the same roof each night. It makes me feel safe to know she is nearby. There has been enough separation. 

This is part of the Yummy Mummy campaign for CLIC Sargent, raising awareness for children with cancer. Visit www.yummymummy.org.uk for information and fundraising ideas and search Twitter for #dosomethingyummy. No one ever expects it will be then, but what makes the difference if it is, is knowing that there is help and support available.


Go to Nickie at I Am Typecast to view others and see what she has to say.