Freedom: proof

Such ordinary pictures, days of nothing special, and yet for my 3 year old each one is a momentous occasion. I took for granted that walking comes naturally to children, babies even, until I had a premature baby who was later diagnosed with spastic cerebral palsy. 

Since the days turned into weeks and then months when allotted milestones came and went, un-met we have done a lot of physio, used gaiters, AFOs, a Kaye walker and a daily muscle relaxant medicine in aid of walking. We have swam, bounced, sung, pleaded over steps and supported, held up and wiped tears when things wobbled. I have cried into my pillow and Wriggles has cried into me (or hit me with a stuffed tiger). But we are getting there. Each step of freedom makes my heart sing louder and if that what it does to me, I can only imagine what it does to an already perfectly confident child like Wriggles, whom quite regularly refers to herself as both "brave" and "clever".

Each step is so hard won: the cruelty of cerebral palsy is that even for those more mildly affected, the tiniest of set backs can prove huge. Each achievement can be crushed by the simplest of things. Growth spurts wreak havoc as muscles and bones grow at different times and rates and the signals in the brain get mixed up. Small viruses sap strength that takes weeks to get back to baseline. In an instant, core strength is halved. Which makes these memories and pictures all the more special. We got there. Wriggles got there.

At the moment, we are still suffering the after effects of Wriggles' recent intensive care admission. She has been out of hospital for two weeks, out of intensive care on sedation for three weeks, but still can only crawl or sit up. Her hard won steps have once again slipped away from her. I know she will win them back again and these weeks of frustration as she yells "I WAAAAAAAAAAAAAALK!" only to fall down because she can't stand up will melt away. It has just been a reminder that the battle is won, but not over. For now.

 

Missing Gaps

Before I jump in with life post-intensive care #2, I'll back track. Wriggles recovered from her tonsillectomy after a tense fortnight of religious administration of Calpol and ibuprofen and by the end of July you would not have been able to tell that weeks ago she had had surgery. Her breathing pattern whilst asleep improved-if anything it unnerved me how quiet she was! I was so used to sleeping next to someone who sounded as if they had tumbled out of the pub after downing their body weight in pints, that to have the serenity of near-silence needed some getting used to. Where as at the turn of the year, I would have to regularly check her colour with a torch in the middle of the night (she had obstructive sleep apnoea caused by the large tonsils and adenoids and a great fear of mine was that she would pause in breathing and just not start again. Her breathing was really quiet noisy and so the moments when she did apnoea were almost deafening in their quietness) I was now prodding her every now and then to check she actually was breathing, such was the change in noise levels! Once we had got through the recommended 10-14 days of rest, there was no stopping her. Especially as we had our first real holiday in the first week of August!

We flew down to the south west coast to spend a week with my parents and godparents in a holiday cottage by the sea. My parents go annually, and have since they met, to a folk festival on the coast and we took full advantage of there being a spare room in a picturesque seaside town with nearby playground! It was wonderful: we spent 7 days surrounded by friends and family, with sunshine, swings and company on our doorsteps. We also got to meet fellow preemie mum and blogger Diary of a Premmy Mum and the delightful Smidge, which was very special to finally meet someone you connect with 'virtually' who knows so much both about your life, but more importantly understands what you have been through and what it means to come out the other side. We slowly made our way back north, but via two more friends to stay with for a few days each that we rarely get to see due to the distance. The last friend we stayed with was one of my closest university friends, now herself a single parent with a beautiful little baby boy and it just rounded off a perfect holiday with someone I adore and who knows all too well the bringing up of a small person alone.

And then, at the end of August and beginning of October, something amazing happened.

Wriggles took her first independent steps. At just shy of 3 years old, she stumbled across to a toy, beaming from ear to ear. I hadn't known she would be able to so soon; I and the physios and doctors had wondered that it might take months or even years longer. But she showed her silly muscles and cerebral palsy just who was boss: her. Not just that, but suddenly she started putting words together, words that just kept tumbling out her mouth. Words I knew were there but for months and months she had been unable to speak and words we couldn't find signing for. And as she let loose the conversational floodgates, with practise her speech began to sound clearer so that other people could understand her too. I always knew she would get there in her own time and I knew it would be very emotional after the pure fight she has had to put up, but it just floored me. To see what she could achieve but above all how pleased she was. You assume they get frustrated, but if they haven't had a skill can they miss it? Judging by her little face every time, she was as happy as I was that she was getting there, if more so. It made the hours of therapy, the tears of heartache and the sleepless nights of anxiety worth it in a second. Of course I would have loved to re-write history and erase the premature birth and magic away the cerebral palsy and development delay, but in this world you can't change the past-but you can make some enormous strides forwards!

Wriggles turned 3 in September: it was bittersweet as usual with sharp memories of the day she was born and the terror of her delivery and subsequent hours not knowing if she were still alive, but fresh with her new skills of walking and talking, it made me proud to bursting point of how far she had come over time and the limitless possibilities she could yet achieve. Disabilities aside, she is a massively stubborn child with a keen streak of independence and knows exactly what she does and does not want, which many a time can cause friction but at the same time can really pay off in making big progress. At the end of the month she started preschool. The idea of preschool had plagued me with so much anxiety, not least because there were a few weeks whereby it appeared that the professionals who support us all appeared to be on completely different pages as to how we would manage preschool and what support may or may not be in place. Luckily it was resolved and after a good bit of prodding, we won funding for a 1:1 support worker for Wriggles. By the time preschool came around, we were both totally ready. The difference in the 10 weeks since we signed the paperwork and when Wriggles' first day was was astounding. I think she would have coped if she hadn't been taking some independent steps and been able to verbally communicate but there is no denying that achieving both those things made the transitional much easier for everyone involved. I wasn't surprised at how easily she settled and familiarised to the new routine and with both excitement and some sadness, accepted just how quickly my little girl who once fitted in my hand, was growing up.

On one hand, I was and am, very excited for this next chapter in our lives as Wriggles is thriving and growing up. And on the other, as silly or selfish as it may sound it just floors me. The last years have been a struggle. There have been some truly special moments and I would not trade any of it as every day has been with Wriggles who has changed my life upside down, but there is no covering up that even on the really good days: life has not been a bed of roses. I hadn't been prepared for parenthood 3 years ago and I was definitely not prepared for single parenthood. When I previously used to think about the future, bringing up a family of one, two or more on my own just did not even get a look in as even an outside possibility. Sometimes though, life has other plans and you either get on with it or you don't. And with some hindsight, it has been non-stop. Hospital admissions, my own mental health battles, health scares, lifestyle changes and the huge unknown that is a child's development when they have problems to contend with...it leaves you running on adrenaline just day to day. Because often if you stop and think, really think about it then you can tip over and fall into a big black hole. But if you keep running, keep savouring those moments of pride, those small steps, those little snippets of ordinary that you treasure for years to come; then that enables the days to keep changing, the world to keep turning and suddenly you get to a point and think, but in a really good way, "how the bloody hell did we get here?". I certainly would not have seen this point when we came home from NICU or even a year ago or less. And that is where I found myself as Wriggles happily settled into preschool and I suddenly could think and open my eyes a little wider. It threw me: for some reason it really rammed home this line we have been straddling, this balance of needs and wants, of what is expected and what happens. Things I haven't allowed myself to think about or miss because I had a very big priority who needed a high level of care all the time. And while that hadn't all just gone away, the world had shifted a bit and the path we have been walking on seems to have gotten wider as there are more possibilities now. As the health and development side of things have became less intense, I find myself floundering a little. I can't wait to enjoy it but a part of me is almost afraid to. Now I can stand and watch Wriggles fly across my vision, giddy with the feeling of being carried by her own two feet, holding herself up tall and proud. It reminds me that that is what I have to keep doing: if anyone can make sure I too put one foot in front of the other and keep going with a smile on my face, it will be her. 

19/52 Exploring

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!

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