Winging It

After a period of uncertainty, a wobble and some time off working, last week I finally heard what was happening in my job. Namely that it wasn't happening. Unless divine intervention hands me a new contract, as of the end of June I will be made redundant.

It is both a relief and terrifying.

A relief because I will have the pressure of trying to do it all and have it all taken off.

A relief because I will be able to drop the mask of pretending it's all hunky-dory and of course I can do everything. In five minutes. Five minutes yesterday that is.

A relief because I will be able to feel more of a mummy rather than someone who says goodbye several times a week.

Terrifying because I haven't been with Wriggles 7 days a week since she was about 6 months old (illnesses notwithstanding).

Terrified because I am worried how I will be judged-yet another single parent reliant on the welfare state for a period of time.

Terrifying because I am scared I will not be up to the job.

Terrified because it feels like so far I have been winging it and it is just pure luck we have scraped through.

What if I can't entertain her all the time? What if she's bored? What if she misses going to the childminder and is in a grump with me? I can't provide a cat or a garden swing. What if when I have no escape I tip back into fighting demons every day? What if it is years before I can contribute financially again?

Part of me is really looking forward to some time with my little girl.She is growing up so fast and it makes me sad to loose out on her new discoveries, even for 24 hours a week. When I drop her off in mornings and she instantly goes to the toy box and waves me off it makes my heart ache. Whilst I am proud of her Independence and assurance, I miss the closeness and warmth of my little baby I carried everywhere. When we are at home, she is vehement in that even though she wants to do everything by herself, she wants me to be watching, hovering in the background to jump in and rescue her or praise her achievements. I am looking forward to doing that all the time, and am hoping without the stresses of work I can throw myself into it without distraction.

But part of me is worried and feels like a failure if I am not putting something in to the bank of my own doing. I know it's just a stereotype but it does worry me that I will just be chalked up by people and written off. I never ever envisaged that I would be in this situation. I feel at odds with myself-the idealist black-and-white view against the compassionate. The maternal urges against cold hard reason. 

Sometimes being a mother, and a single mother at that, is like having two voices in your head constantly arguing. Go to bed, voices. Please.

Maternity Leave

Tomorrow when the Queen gives her speech, she is expected to address the proposed new changes for maternity and parental leave as put forward by the Coalition government. After reading the proposals, I found them slightly chilling. The new proposal stipulates that mothers would be entitled to just 18 weeks maternity leave with anything further by personal agreement.

Currently, mothers are entitled to 39 weeks of paid maternity leave and 13 weeks of unpaid maternity leave. Mothers can go back to work after just two weeks if they choose to or have little choice in the matter, but are entitled to take up to a year off which would not be paid at the decision of their employer. Fathers are entitled to two weeks of paid paternity leave.

The proposal put forward in the Government's Modern Workplaces consultation, published last year, would give mothers just 18 weeks of maternity leave, and at the employers discretion up to four weeks of reserved paid parental leave, followed by 17 weeks of paid parental leave and 13 weeks of unpaid parental leave, which could be shared between mothers and fathers.

There are some loopholes in the current wording putting parents at the mercy and sympathy of their employers and I personally found that when your working contract is at odds with legal maternal rights, no one, including Citizens Advice Bureau or Welfare Rights knows what to do with you. The new proposal sounds even worse for cases that may differ from the norm or at such stage involve complications often beyond the mother's control. At present, there is no allowance for special circumstances like medical need, including maternal problems pre or post-natally or conditions affecting the baby, such as infections or preterm birth. My own maternity leave, started the day Wriggles was born rather unexpectedly. From what I recall, my working contract did not actually include anything to do with maternity leave or in the event of, as I was a new graduate and at the time of employment, no one including me, knew I was pregnant. This made things even more complicated than they would have otherwise been and I was passed from pillar to post whilst someone tried to work out what I was entitled to, which was then further complicated by Wriggles being discharged on oxygen meaning that formal maternity leave went out the window and I ended up being on parental leave as a carer instead. However, for other parents with more watertight or appropriate work contracts, preterm birth can mean that maternity leave is brought forward drastically (one woman I spent the NICU journey with, started 6 months maternity leave after leaving work at 26 weeks to go on bed rest and then having an emergency Caesarian section at 27 weeks) or if you give birth spontaneously then maternity leave can start from that date.

The difficulty with a complicated labour, birth or neonatal period is that there are no magic answers, no fixed timescales and no promises. A rigid set number of weeks for maternity or indeed paternity or parental leave has no mercy on the world of NICU when things can change rapidly. If your child has been born prematurely and with no other obvious complications, parents are generally told to aim for discharge around the due date. Some get to leave early if things are going well and some stay in days, weeks and occasionally months afterwards. We all wish we had a crystal ball to predict things, but parents live on hope whilst employers and legal systems demand answers. Like, yesterday. 

Even once you have escaped hospital, you have two things staring you in the face: 1) you have just lost a huge chunk of time sat next to an incubator staring blanking and jumping out of your skin every five minutes when the monitor beeps and 2) you have possibly also mislaid a chunk of your mind as you process what your little family has just been through. Some parents seem to be able to walk away with a shudder of the past; many, many others struggle if not immediately afterwards. It is so hard to predict also what problems relating to or independent of prematurity will arise along development and how that will affect your working ambitions and situation.

Looking at the dates laid out, I have looked back over my 'maternity leave' and was horrified that I might have had to return to work when my daughter was only just 6 weeks corrected: an utter newborn.

18 weeks 17th January

At 18 weeks, Wriggles was still on full time oxygen. She was 5 weeks and 6 days corrected. She had no concept of a sleep routine although was slightly less erratic. Although she was a very good weight and lounged comfortably on the 50th centile for corrected age, she was a titch and was still largely in premature baby clothes as all the high street "tiny baby" and newborn sizes hung off her. She could have keep all her toys in the bottom of the sleepsuits! At 18 weeks we were still having visits twice a week from the community neonatal team to do oxygen saturation spot tests and check her weight and feeding. We were seeing the physio team regularly to deal with her torticollis and plagiocephaly and also had regular contact with the nutrition department and respiratory team to have monthly RSV jabs, to ensure she did not catch the virus which could have been extremely debilitating for a premature baby on oxygen. She would wake for small periods in the day (or night) and was largely floppy still. There were signs of her beginning to twitch her facial muscles although a smile was a while off yet, and her cry was very definitely the mewl of a newborn still. Reflux was here with a vengence and she would regularly projectile vomit and be quite unsettled. She fed 4 hourly on the dot and was a bit bemused by life, the universe and the idea of wearing tights (tried once only).

26 weeks 14th March

At 26 weeks (13 weeks and 6 days corrected) Wriggles had been weaned off oxygen in the daytime and was completing a sleep study with a view to removing it at night time too. She had had her first bout of suspected bronchiolitis. She was not yet on solids, although we started weaning the following week. She was sleeping for longer periods at night time and napping still in the morning, lunch and afternoon. She was in a pattern whereby she liked to have a bottle (100ml-125ml), go to sleep and then have some more milk when she woke up. She would drink roughly 20oz in 24 hours on a good day and had started teething, although no teeth would appear for another 6 months! She could hold her head up and smile and was very slowly beginning to tolerate tummy time. When on her tummy, she could raise her head for a few seconds and balance on her forearms and was beginning to learn the basics of cause and effect-.ie. hitting things on the baby gym. She could hold things briefly, like her frog rattle and the thing that made her smile most was our stuffed Very Hungry Caterpillar walking over her head and bopping her nose. I had been diagnosed with PND and was not coping marvellously well. I was sleeping and eating terribly, had lost quite a bit of wake and was struggling with social interactions and jealousy when other people held my baby. I had convinced myself she didn't know I was her mama and wouldn't care less who she was with; I loved her fiercely and this made my thought even sadder. The best bits of the days were cuddles on the sofa and Wriggles dozing on my chest. We still had weekly visits from the community neonatal team and had had the appointment for our 6 month check though.

Actually returning to work-33 weeks Early May

I was due to return to work in April 2010, in what would have been Wriggles' 29th week. However, she had the dreadful bad manners to contract pneumonia and wind up in Intensive Care for three weeks, effectively wiping out most of the month. Towards the end of the month, we ended up back in A&E once if not twice and so it ended up being the first week of May I was back. It ended out working out quite nicely as this gave us time to move and settle in and to also get to grips with our new GP surgery who would come to know us well. We got to know the childminder better and gave Wriggles some proper settling in time and me some piece of mind. By this time I was beginning to fall apart mentally but was determined to return to work with my single mother mantra held high. I started sertaline, a SSRI anti-depressant and was diagnosed with Post Traumatic Stress and was constantly haunted by nightmares and flashbacks. I felt incredibly detached from everything and it felt like difficulty bonding all over again. Gradually this would ease and I would learn (in the snatched healthy moments) to enjoy every millisecond of being with Wriggles and laugh and sing. Wriggles had miraculously put some weight on and despite every other weekend being rushed to hospital, was thriving in between. She was rather excitingly beginning to fit into 3-6 month clothing and could sit supported in the rather fantastic Bumbo which we were lent by the physio community team. She could finally bring hands to midline although refused to roll over. The oral aversion had started by now but at this point, not acknowledged by the medical team.

39 weeks 13th June

Although I would have preferred to have been off until at least 9 months corrected, if I had had to return to work at 39 weeks when Wriggles was 6 months corrected then it wouldn't have been the end of the world. Of course I already was at work and had been for over a month and with honesty was really struggling. I was too afraid to speak up in fear of jeopardising my position and barely had the time or energy to seek any advice which might have helped me. Further to the stress of having returned to work, we were in the thick of admissions and oral aversion meaning feeding was a struggle and we seemed to be at the hospital as much as home. It felt quite a bleak point for me, as it seemed that when Wriggles was well she was being looked after by someone else whilst I fiddled about with highlighters and when we were together it was at the blooming hospital again. I was finding things easier though in terms of mental health and my relationship with Wriggles felt stronger. I was finally accepting that she loved me back, and we were tentatively starting to go to mother and baby groups and socialise a lot more. Had I have been off until this point, I think I would have maybe had more chance to build and strengthen friendships with fellow parents, meaning I would have felt less isolated. I would have also felt more confidence in my mothering skills and certainty that I knew my daughter best.

52 weeks 14th September

At a year old, Wriggles could very-almost-nearly sit up for incredibly brief periods but was determined to master this skill. She did in the end a few weeks later, but was having wobbly periods of trying now. I was having much less wobbly moments although found her birthday harder than I had hoped I would. The oral aversion had been taken a little more seriously although the range of food she would accept if any, was very limited. She relied nearly entirely on milk although was more relaxed touching food. We had regular activities to go to and Wriggles was proving to be quite the party animal meeting other people. She has always been a social and smily baby, but the older she gets the more she seems to charm people! I do think, had I had all this time off then I would have returned to work with maybe a tear in my eye but ultimately well adjusted and ready for a fresh challenge. It would also have really helped as throughout the summer, respiratory infections came so thick and fast and each one was like a kick in the stomach. Things no one can warn you about truly whilst at NICU but something which nonetheless can be part of the package of a premature baby. Juggling this with a work regime is tiring, mentally and physically. Most evenings I would collapse on the sofa and it would be all I could do to try and concentrate on simple TV programmes let alone more adventurous stimulating hobbies.

Charities and parenting groups have already begun to express their concern. A key group of 17 groups wrote to the ministers outlining their concerns and pushing for a minimum standard of 26 weeks maternity leave to be implemented. They highlighted issues such as childcare problems, life with a newborn, parents coping at work and unforeseen complications such as a period of time in hospital for mother or baby or postnatal depression. The letter to ministers was signed by Bliss, Child Poverty Action Group, Citizens Advice, Family Lives, Fawcett Society, Maternity Action, Mothers Union, National Childbirth Trust,  NUJ, Prospect, Twins and Multiple Births Association (TAMBA), TUC, Unite, UNISON, University and College Union, Usdaw, and Working Families. 

You can join the Six Months For New Mums campaign run by Working Families including on Facebook, which is campaigning for all mums to have the right to a minimum of 26 paid weeks of maternity leave.

The more I have thought about it, then more passionately I feel that new mums with whether their first, second of fifth child should be valued and respected enough to have a sensible amount of time off. I know we are in a recession and that employers and the Government do not have bottomless pits of money or are there to act as charitable causes, but to me this proposal is sending out the wrong message to women and parents alike. It looks set to widen the gap between gender, those with and without families and endanger long term pay and working situations for families as well as ambition and motivation both at home and in the workplace. We are supposed to cherish family life: not wish it away.

Decisions decisions

I have always been rubbish at making decisions. Always. Ever since I was a little girl, I have been terminally hopeless at making any sort of choices and generally happy to tag along with what someone else decides. The only exceptions are things I passionately believe in and very personal things. Most small things, I'll certainly put my tuppence in, but will often get swept up with other things. Partly, I'm quite laid back, and partly I'm hopeless at articulating what I want. I find it doesn't help that I also have a stubborn set of ideals and morals which I often at odds with the real world, and the confusion batters me into submission or delaying everything.

The best decision I have ever made is Wriggles. I had never even vaguely considered being a single parent, and when she was first born and my mind was in a state of complete shock, all I could think of was that she needed and deserved the love, time and materialism of a traditional, secure and loving family. Until the shock subsided and my own mind crept back out into the sunlight, it didn't cross my mind that I could give her the love of two parents and try to make ends meet with everything else. For a while, I was desperately sad but adamant in that I could not and would not be able to provide. I knew people with far less than I had had babies and raised happy, healthy children but for whatever reason, I simply could not see myself in that role. I was determined that someone else would be best for her. I would go home late at night after spending the days by her incubator and read up on success stories of adoption and foster care, and cry at the thought I might not see my girl grow up with my own eyes. Not see her learn to giggle and be an angel in her first Nativity play, or make her birthday cakes and spend hours washing her socks. By this point I had come to terms with my surprise preemie and cautiously began to fall in love, but I was at odds with what I thought I believed in. I could not make a decision and every single day, almost hourly, veered between thinking through the options. Eventually it got to a point where I could not contemplate signing legal papers denying my motherhood; the thought of saying goodbye for good made me feel physically sick and hysterical and I could not even think of the notion without ending up in floods of tears. I remember vividly being told that there was a foster placement if I wanted it, and the fingers of icy dread gripping my heart and freezing my life on the spot. Oh god, what have I done... I had still been spending all my days with tiny Wriggles, doing her cares and holding her close, learning to love her and fight for her with a passion that took me by surprise. I only felt alive when she was with me, the rest of the time I was just existing. Suddenly, the very real contemplation of this being for nothing and loosing what had become most dear to me was too much. I knew in an instant that I would do whatever it took but that I had to leap into the void of complete unknown and pledge my life to this tiny, sick being and battle with every fibre of my being to make this, my little family, work. And so that is what I did. There were no more questions about woulds and coulds and anyone or anything that got in my way or threatened my daughter or me would have errr, me to deal with. Honest: I can be (a little bit) scary when I want to be.

I wish I could say that this experience has changed my indecisiveness for good. Alas it hasn't! I do find things easier now, but will still run back and forth thinking a thousand what-ifs. I can't even begin to say yes or no without looking at every angle, twice, and every outcome. Even if it is as simple as 'tea of coffee'!

Tomorrow I have to meet my boss and hear about the staffing restructure at my work. All I know so far is that we all need to step up and take on more responsibility. I suspect this means as well as more work, more hours, more flexibility and generally less faffing about with paperclips. I am torn-I want to be the provider so my daughter grows up proud, but having had the last few weeks off I feel more alive and calmer. My pace of life has slowed down and though it is tough and drained being locked indoors against a rain lashed outside while the toddler shrieks at getting stuck standing times and needs rescuing approximately 8364543931 times in an afternoon, I would take that hands down over filing invoices. Several mothers I know are now ending maternity leave and returning to work and for some reason, the thought of leaving a job feels selfish. I don't even know for certain what the new job description will hold, how financially stable or otherwise I would be not working so need to do some thinking and listening. I'm trying not to get ahead of myself and to prioritise what is most important. Value baked beans for tea everynight in exchange for endless afternoons on the swings? Or being able to go for lunches out and having to brush my hair three mornings a week?

WHY can I not make a bloody decision!

To be or not to be?

Cheerful, that is.

I am currently signed off work to come to terms with and acquire adequate/successful management of my depression and anxiety so that I can juggle both single motherhood and working at the same time. After a slow-building but sick-inducing wobble very recently, I simply could not do both and with no family or back up, it was with both regret and relief that I agreed to forgo a small period of working to make sure I could mummy as best as I could, rather than fall apart and let my one year old take the consequences. I am already feeling calmer, more rational and more positive with regards to the future. This weekend was a stressful weekend, as Wriggles was poorly again, but I am proud to say I held my cool and even made us leave the house yesterday to go to a parent and toddler group we haven't been to before, and speak to strangers. You know what; I think we both even enjoyed it. A breakthrough. Before I could barely manage the duration of such a group without a panic attack or breaking down into tears either and running off (with Wriggles in tow of course!).

Today was a good day.
I had a productive appointment with the psychologist I see.
Wriggles and I went to an art gallery with an interactive pre-schooler section and listened to a story and then played with some blocks, a plastic tea pot and a colour mixing bubble lamp (honestly, that alone signifies a brilliant day surely?). 
We met up with my good friend and had lunch (ie. cake) in the cafe and Wriggles ate half a packet of Quavers (dietician approved. Salt content is soooo yesterday...when your child doesn't normally eat) and consented to having some spoonfuls of fruit and custard too. 
Afterwards we went for a wander in the sun and put the world to rights while Wriggles dozed in the pushchair, wrapped up in her pink coat and spotty socks.

Then I saw some people from work.

It was a bit awkward.

When you are sick and it is not a physical illness with obvious signs, how can you prove it? Answer, I haven't a clue. Answers on a postcard please. I felt a fraud. I know I am not, but I still felt one. Do they think I'm making it up or exaggerating? Do they think I just don't care? I worried and wondered if they would say anything to my seniors back at work. Silly, even if I was at working, Tuesdays are my day off anyway, why shouldn't I be out?

There is a real misconception that depression means a constant state of melancholy and wringing your hands. Depression can actually manifest in many other forms and is very changeable. You can have several good days followed by many more terribly bleak days. You can have several good weeks, followed by despair and isolation. Depression is not just unhappiness, it is more complex. Depression is always there in the background, but on good days it is not the defining factor in your day. It is possible to laugh and smile and do "normal" things. It is possible to make decisions and feel motivated. In fact, it is really quite important that on the good days, you really make the most of them. Sitting inside and feeling guilty is only going to enforce a negative cycle of behaviour. It can be a self fulfilling prophecy-I am depressed therefore I must act depressed therefore I will feel more depressed... in a nutshell, not helpful to you, people around you or people helping to treat you.
I know that this time off is imperative that I will be able to get on with life in all spheres soon. But I desperately needed this little break to slot my mind back into thinking mode and start feeling like I am "living" again and not just "existing". This time off is helping my focus, concentration, ability to make decisions, ability to prioritise and face up to things and think rationally. It is letting me manage things not let them manage me. It is reducing my anxiety and rekindling interest in anything other than hiding under the duvet. I have never questioned my feelings for Wriggles in the dark moments, if anything my love for her burns bright with a fierce intensity, but I could see my capabilities and my day-to-day devotion through simple tasks and attention slipping away as I would struggle with daily tasks, routine and getting things done that needed doing. I am clawing those things back now, and breathing in each moment as it happens. I am trying hard to be here in the present, not floating in the ether looking down.

But can you show people that in a brief meeting? How can you say that when people say "How are you?" and you reply on autopilot "OK, good thanks." Because anything more is a long and/or delicate conversation that is not really for fleeting moments.


I am revelling in feeling cheerful again. I am getting better, just not "cured" yet. I know my close friends and family understand.

I just hope other people do too.

Urgh

"Mummys aren't allowed to be ill." My Dad

They certainly aren't allowed to be ill when there is just one parent, an absence for 300 miles of family and your fall-back best friends are on holiday in London or Canada. Yesterday, I was caught utterly short by this predicament.

I have been exceptionally lucky and only be truly knocked out twice so far in my daughter's lifetime, but they are times I would really rather not repeat. When there is literally no one to step in, it is really tough. Not wanting to sound like a whinger, but surely if there was a benevolent force, single parents would be made immune to all bugs, viruses, lurgies and exhaustion at the pinnacle point of singledom?

Home Sweet Home

Oh little home am I glad to be back!

After writing my last post, we ended up back in hospital within hours. Wriggles was refusing all hydration and vomiting medication and syringes of water back up. After a breakthrough with a spoon of runny ice cream, I was convinced we had crack it, but soon this came up with copious amounts of dried blood. As the afternoon wore she grew floppier and more lethargic and I began to panic. Luckily we still had open access after being discharged just hours earlier, and a phone call to a nurse confirmed they were keen to see her. Being a pessimistic sort, I decided to take along some jimjams and spare clothes as well as a washbag. Just In Case.

Frustration

Generally, I have made my peace with oral aversion and it's place in our lives. I have accepted that we are in for the long haul and that one day some years down the line, I will look back with relief and wonder how myself and Wriggles kept our sanity in tact. I understand that there is no magic cure or divine intervention, no magical point where suddenly it is gone. And then, there are the increasingly rare days like today where I want to wail and stamp my feet and scream that it's not fair and got and hide in a huff. I hate feeling cross with something I have no control over and something I don't want to show Wriggles that it affects me, lest I make it worse. I save my frustration for nap times and bed times and cross walks home, where I can breathe and seethe. I'm not annoyed at my daughter, I'm annoyed at the universe and that some people will have to struggle while others don't. I hate that I get annoyed and snappy with people I care about who try and make helpful suggestions, that have long been tried. Very few people understand that it's not that we haven't hit on the perfect way of eating or the perfect food, but that the problem is the entire process itself. It is part behavioural, part sensory and part psychological; and all in an essentially very young child who is not equipped to deal with reason.

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.

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'.