Counselling

When you have a baby, one thing you do not normally associate is starting counselling sessions soon afterwards that are in direct correlation to these events. Then again, for too many parents "normality" is thrown out the window. When you have a sick or premature baby or a traumatic birth, the rule book is ripped from your hands and it seems someone is laughing cruelly. You have all the same tools as everyone else but something is missing that you cannot quite grasp. I imagine even the healthiest baby, smoothest birth and both fleeting of baby blues produces a confused, knackered, upset and bewildered parent. But tweak some factors a little more and it can feel like you are walking between nightmares and the best thing in the world. You know you are blessed, are grateful beyond belief, can tangibly reach true love...but that is only one half of it. And that fact casts you even deeper down a path of gloom, grief or blame. Sometimes all three.

I was first referred for counselling whilst Wriggles was still on the NICU. We were beginning to be on the home straight which adversely became the patch I began to fall apart. I could not fathom being able to care for my baby at home in the way the hospital did. I got nervous. I got emotional. I cried.  lot. When I was trained in resuscitation and infant first aid, I broke down completely because it was too close to home to the CPR I'd had to try on my minutes-old daughter before the paramedics arrived. Then it was confirmed we would go home on oxygen. The sky fell in. Any notion of being able to turn our backs on prematurity, run for the hills or grasp in the dark for any kind of normal baby-magazine like existence was snatched and I was going to the dragged kicking and screaming into the acceptance.

Initially, I was not overjoyed about being counselled. It seemed like another thing to chalk up to failure. You can't even just have a baby? What sort of a mother are you? That first session I was very mechanical. I had got to the point of facts, just facts. Name. Age. Date of birth. Feelings? No, feelings are tied away. Locked away and thrown the key into the abyss. I don't recall a lot, but I do recall the kind lady saying with clarity at the end "you need to allow yourself to feel."

But I couldn't. I would have the odd breakthrough crying sessions, I would tell our story, I would go through the motions, but it was like there was a solid wall. I was talking but there was nothing behind the words. I would not let how I felt about what I was saying out. It was too dangerous. There was a torrent of emotion somewhere that could quite possibly destroy me. Then after we got home, my daughter got sick and then we came home again, I went downhill very fast. It was like a swift plummet, being winded in the gut. I did ask for help then because the only glimmer of rationality left told me that if I didn't things could get ugly and I was the sole person responsible for my daughter and owed it to her.

I was even less overjoyed about the idea of taking medication. To have to be medicated for being a mother? Despite gentle professionals saying but a mother who has been to hell and back, it just didn't sink in. But I took them, thinking what had I to loose. To my surprise, they helped to dent the cloak I had surrounded myself in. They let in tiny chinks of light and slowly rescued some energy, some drive, some routine... Alongside this I also saw a very well meaning counsellor who patted my knee, passed the tissues and said "Oh goodness me, I couldn't have done that" a lot, and also thankfully stepped up sessions with my original counsellor who had importantly been with me the whole time. She has seen Wriggles at the point of being critically ill, in NICU, at home, playing-she had seen the highs, lows and mundane of our lives. And that went a long way, not least is gaining my trust. She had also had her own premature baby twenty years ago and didn't need telling twice about what followed. She listened to me, said some very wise things and never once told me I was a bad person.

Did she fix everything? No. Did she make things more bearable? Very much so. She embarked on a long quest to try and stop me blaming myself and inflecting blame, guilt, remorse and turning these things into long strings of anxiety and fear. She didn't put a full stop to it all, but she did greatly stem the tide and genuinely seemed to care that I wasn't putting myself in torturous circles. The day before Wriggles' second birthday, she turned up at my flat with a birthday present and card despite not seeing her for months. I was so touched that she remembered and cared enough when essentially we are but a handful of her clients. It is little things like that which slowly help pick back up the pieces and restore your sanity bit by tiny bit. Couselling may not be a magic answer or quick fix but it is a service I believe that all parents or family members in difficult situations should be entitled to as just reaching out can remove some of the bricks of your burden. Without it, I fear I would have fallen very low and very badly. I don't know how things would be now if I hadn't have had that chance.

I wish I could say that presented with the tools of good counselling, the caring arms of supportive friends and family and a good overview of CBT that I am completely all done with the past. But this little blog is testament that I am not. Nothing is that simple. Things may be a lot better but there is always one foot still in the past, stuck in a puddle of murky memories. And sometimes I slip and fall straight back in and need a helping hand in climbing back out. All too quickly, the tendrils of anxiety, paranoia and remembrance can curl round your being until you are caught fast in a trap of fact and fiction and have to unravel what is reaction and what is irrational. These last weeks I have been struggling again, feeling the fight ebb out of me. I guess the difference is that I know this isn't forever because things have improved before and will again; not that it makes things feel any easier day to day until we have ridden this out. The mind is a powerful tool indeed.

My Happy Place

Giving In

In July, I accidentally came off my antidepressants that I had been taking for over a year following a diagnosis of Post Traumatic Stress with secondary depression and anxiety. I had been feeling a lot better, was managing day to day life and my own feelings and so when Wriggles was rushed into hospital, asking someone to go back and collect them for me was not even in my top ten of priorities. In fact, it wasn't until pretty much the end of the stay did it occur to me I didn't have them. When we did get home, complete with NG tube, I was really a bit of a mess to actually register whether I should re-start taking them and was quite distracted by the fact that we had appointments and community nurse visits coming out our ears and that my mum came up for a fortnight to keep an eye on us (ie. to make sure I wasn't tipping the loony scales). I was so fatigued throughout the summer months from admissions, then surgery, then getting to grips with a gastronomy tube and then coming to terms with the CP diagnosis that the world was slightly spinning. Who wouldn't struggle? I got dressed (if mis-matched), left the house (because I couldn't bear to always stay in) and Did Things to try and amuse the toddler. We had some fun, survived the second birthday and then landed in hospital again and since then I have been struggling to bounce back. After a few horrid days, it all subsided and I wondered what I was making the fuss about. But since then, it has been creeping back up on me like a little dark cloud hovering over my head following me around and is not going away. I feel like I am teetering on a tightrope wire over an abyss, about to fall any minute into an untold pit. I can't switch off the worry, both irrational and rational, however hard I try. I can't relax or concentrate.

On Saturday, we went for a Halloween soiree (read: small gathering of 4 toddlers and cheese on cocktail sticks at tea-time) and I had a G&T. Because my previous medication didn't mix with alcohol, it had been virtually two years since I had had a drink with the exception of the day when I got the letter confirming CP where I drank enough rum to feel completely numb and send me to sleep. So, understandably, this one drink sent me a little squiffy. As I walked back at around 8pm with the Wriggly one in her pushchair dressed as a cat grinning madly, with firework displays going off around me, it felt like walking on air. I wasn't in ecstasy, just pleasantly cushioned with a warm and fuzzy feeling enveloping me. I didn't worry, I didn't obsess. And then the next day, it hit me. I used to feel like that at least the majority of the time. I used to feel like that pre-child. I used to feel that way when my PTSD and it's entourage was being effectively dealt with. I used to feel Alright, I used to feel Relaxed, I used to Smile without force. Maybe I didn't float everyday, but I didn't drag.

So I am giving in. I am going to plead with my GP to let me try medication again. I feel like I am struggling and I need a cushion to get me through this next bit. I have been patiently waiting for this 'low mood' to lift and it is doing nothing apart from drawing in closer. Memories, feeding tubes and hurt doesn't go away just like that. But if I could a little less like a zombie, that would be marvellous thank you very much. Please.

Duck

Some days I am like a duck on water, (I was going to say swan but am nowhere near that graceful) on the surface serenely paddling along taking it all in my stride, quacking at appropriate moments, dabbling for leftovers...but on the underneath, frantically paddling to stay afloat and not sink however much I would like to drown in self pity and stick my head under and not come up again for a long long time. Today I am an upside down duck.

There is no particular reason, apart from throwing off a slight cold myself and taking care of a sick child, and carrying on with everything we do everyday in it's tube-feeding, physio-exercises, refluxing glory...oh yes actually, they look some very good particular reasons.

I AM ANGRY. VERY angry. Not at someone or anyone or anything. Just at the sheer bloody unfairness of some things. I know some people believe things happen for a reason. For better or worse, I am not one of the those people. How can suffering in any guise be for good?

Two years ago, my little girl was critically poorly in a plastic box, her little bird like body being pushed to it's physical limits to stay alive. I had held her once.

Two years later, she is lovely beyond belief, full of beans but still needing medical help in different forms to ensure day to day is comfortable and monitored so that things are not getting out of control. Medical science is amazing, I just wish we didn't need it. I am angry that somehow, she came to need it. That she needs tube feeding to protect her lungs, that she needs medicines to stop stomach acid damaging her oesophagus and airways. That she needs exercises to stop her legs, feet and hips from tightening and ceasing or delaying development further. Some days I am so TIRED of accepting and riding the wave of all this vital and gratefully received help and I just wish upon wish things were different.

That she would let herself eat. 

I am her MOTHER. Why can I not feed her in the way we take for granted? 

I want her to experience the delights, the sensory, the social aspects of eating. The pleasurable rituals we play out daily, the tingle, the sharp, the smooth textures, the range of tastes from surprising to comforting. The salivation that comes from it. The pathways our brains make from it. I want her to be able to go for tea with friends. To use food as a means for happiness not just necessity. 

Some days it pains me to keeping trying when she gets so agitated. 

Some days I am very angry that parents have to fight to be taken seriously. It has taken 2 years to finally get doctors to take her reflux seriously and to get to the point where she is 100% tube fed and will be for the foreseeable future. Because otherwise, her already vulnerable chest is at risk. Today I got a review letter confirming that the bronchoscopy, her pharynx is hypotonic (pharyngomalacia: basically "floppy", narrowed and prone to collapsing under strain). This was briefly noted back on PICU when she was intubated at 7 month old! How has it taken until now to get a name? Unsurprisingly, this can lead to feeding problems. Well who would have guessed?!

Mostly I am just furious that things are not straight forward. ALL I WANT IS MY CHILD TO HAVE A PERFECTLY ENJOYABLE UNCOMPLICATED FUTURE. 

Is that too much to ask?

Tether

One of the cruellest things about parenting and responsibility is the accompanying guilt.

Why aren't I doing it right?

Why is [insert anyone from baby group] so good at this and I am not?

Why do the creatures we love so much try us?

Why do they press our buttons when we just want the best for them?

Why can't I do this?

When can I run away?

What is wrong with me?

Some days it is relentless in it's let up of internal criticism. Some days I just want to walk out the door and I run and run until my feet fall off. Some days I want someone 'proper' to take over.

Of course I don't.

The furthest I've ever run to is my bedroom; just metres if that. I won't even lock myself in the bathroom.

Some days I don't know if it is being "just a mum" or if it is a throw back to the days of NICU and the accompanying uphill struggle that has been oral aversion, recurrent admissions and a scary unknown future. I can't forget. I wish I could. But the pain is still there in the background, lurking. Waiting around the corner. Waiting for the light of my life to close her sleepy eyes when the grief will pounce and smother me until I can fight no more.

I thought I had this depression, this rememberance, these experiences under control. Somehow, behind my back they have broken free of their shackles and crept up to tap me on the shoulder.

I am so tired.

Today it was all I could do but to curl up in ball on the floor while Wriggles pulled everything off the bookshelf half-watching In the Night Garden.

I have no idea what Iggle Piggle did with Upsy Dasiy. My eyes were closed. My brain was numb. I felt nothing, saw nothing, heard nothing. I should have been awake, alive. I should have been playing with my precious child. But I couldn't. I selfishly couldn't find the strength to even sit up or mumble through The Very Hungry Caterpillar.

Why is it all so hard?

When can I move on?

When can I get it right?

When can I have happy moments all day and everyday?

If not for me, then for Wriggles. Please. She deserves it.

Choosing to See

One dilemma for parents of ill children, particularly very young ones, is choosing how much to watch with the consent of the medical team; how long to stay and when to leave. As well as being there for your children, you have to protect yourself as you are the adult living with the knowledge, the memories and the decisions.

I was watching the fabulous yet emotionally wrenching Great Ormond Street on BBC 2 this week about pioneering and experimental surgery. One brave set of parents were asked an incredibly difficult question: if an operation was going wrong, would you want to be brought into the theatre to be with your child? I have never been in this exact position, but I have been asked a similar question. When Wriggles was in Intensive Care and had her cardiac arrest, one of the doctors who wasn't doing life saving procedures gently suggested I might want to leave.

I didn't.

"Are you sure?" a nurse gently asked. "It can be very distressing."

I stayed. To her immense credit, my best friend who had happened to be sitting with me at the time, stayed with me. I'm not sure I could watch someone else's child go through that.

Although since I have been haunted by the memories that have been fiercely burnt into my mind, I don't regret it. Some people might see it as rubbing salt into a wound, of doing further harm to yourself, of not looking after yourself. It is a very personal thing and one that I think can only be truly decided by the exact circumstances in that exact minute, and the severity and gravity of the situation. Obviously your own beliefs also play a part and your knowledge of your capabilities. 

When Wriggles was is NICU, I preferred to stay with as many procedures as they would let me. I stayed for the head scans, the retinopathy exam, the blood tests. I stayed when they had to stimulate her at times if she lost colour and had apnoeas and bradycardias. I don't think that this makes me a better person than someone who couldn't stay at all. Everyone knows what is best. In NICU, a large part of staying for procedures stemmed from a sense of guilt and a very precarious mental state that I was in. Yes, of course I wanted to stay for Wriggles' sake but also I felt I had to. As I have written about before, the very early days were a minefield that were dictated by pure shock and with no roots in emotion or rationality. The guilt from this once it passed was horrendous and taunted me that however much I loved her, I could never make it up from the ambivalence of the first days. Of course this isn't the case. I know now that shock and trauma breeds automatic responses that don't reflect love, passion, family, memory or truth. I became a little obsessed with the idea of staying by her as a mark of my devotion. Luckily, I didn't see anything too horrible and was rewarded by being able to sneak extra cuddles as compensation. Had our journey been far more rocky, it could have been a different kettle of fish so close to that time.

Intensive care at 6 months old was a different situation. I was mentally a lot more "with it" and had allowed myself to fall hopelessly in love with my daughter whom I had cared for, for four months since discharge. I didn't have the same conviction that leaving the room was the equivalent of deserting her for good. However, I still stayed throughout the ups and downs. This was very different though: in NICU, she was very sick and very fragile from prematurity. But, aside from the first week of her life, there wasn't a point that either the medical staff or I believed her life was endangered. Vulnerable, yes. Developmentally uncertain, definitely. But on the absolute brink? If anyone thought so, they never said. In intensive care though, she was in a very critical position. At the beginning of the stay, although I wanted to be with her, with persuasion I could walk away and sit next door when they intubated, x-rayed or took bloods from her. At this point she wasn't yet critical so I was confident that I could come back and she would still be there; be mine. The ties became much stronger over the coming days as she became sicker. By day 4 of PICU when she arrested, I was thrown into the dilemma: do you want to watch? 


There was no way I was leaving then. If, in that split second as I had to acknowledge, I might loose her then I wanted to be with her. I wanted the person that loved her most to be within touching distance if the unthinkable happened. It's a funny parallel: you simultaneously never give up hope and believe stronger than you have ever believed in anything in that moment, but at that same time, you have in your face the very real fact that life is hanging in the balance. It is like being on a tightrope, but hugging it tight, so tight as if you will never let go and that is what will save you. I felt the same when my dad was critically ill a few years prior-you don't allow yourself to project that life will cease but yet you know it may and the fact nips on your heels as you run on, believing in love and life. And this is the point where only you can choose what to see. Some people will need to stay; some will equally need to go. There is no wrong and no right. One parent may need one thing, and one another. Each may have regret afterwards, but that will vary massively on the outcome.


We were the lucky ones.


One minute thirty seconds.


It could have been so much longer.


It could have been so much quicker.


It could have been a different story altogether.

Could I do it again? I hope against hope I will never ever have to. It is not something I could ever forward-plan. Ours was a one-off episode and thankfully Wriggles has never been that severely ill again. Yes, poorly, yes needing support, but never like that. Watching and listening to stories of families that live that state for infinitely longer was utterly humbling. Both the children and their parents have strength beyond anything you imagine when your child is first placed in your arms, or through an incubator porthole. Love is a force that truly is incredible.

My girl?

Plop.

Through the letterbox came the written report of the last appointment at 15 months corrected with the paediatric team which had gone fairly well. They were happy to leave it until around August, just before Wriggles is 2 and seemed content that I was doing all the right things and generally being a Good Mama.

"...at clinic, Wriggles was quite happy playing on the mat and was reluctant to go back to you [me]."

Bang.

Like a dagger to my heart.

Inside I crumpled up again, momentarily back swimming in confusion, hurt and rejection. 

After I got over the initial struggle of NICU coming to terms with my very new, very surprise and very vulnerable little scrap in an incubator, I fell in love. There was never a question over that. The struggle I had was accepting that Wriggles felt anything in return for me. This struggle was a very long one and took many session of counselling, many cuddles and many many months (I would say well over a year) until she started blowing me kisses and hanging onto my leg.

 

Parenting is a very unique relationship that breeds unconditional love from the responsible carer towards their dependents. And it is always assumed that this love, in a different more taken for granted way, is returned by the children. At it's least sentimental, because in most cases, the child knows no other parents and no other love. It is the first relationship, and hopefully most long lasting and simplest yet most complicated they will ever have.


When our minds play with our confidence, cruelly, we question even these most basic facts. Whether she knows what love is, I am Wriggles' constant and the person she is with by far the most. I am there morning, I am there night. I am there in the middle of the night. Just me. Just us. I am there in sickness (either of us) or in health. I am there in good spirits and there in a grump. So knows that. As my friend V pointed out recently while Wriggles was blowing kisses to her, she knows what kisses are and distributes them so freely because we have such an affectionate relationship and to her, kisses are the norm, because she has always got them. What a lovely innocent world.

I know the report was not in any way criticising me or suggesting my daughter is indifferent, or worse, doesn't know who I am. It's my fear shouting over my rationale and that if she didn't know my world of security and comfort, she would be fearful to do any venturing. It's just that my (not so) secret fear is that deep down she doesn't understand who I am, and running on from NICU thinks that the entire world is her family, happy to embrace and be caressed by stranger after stranger taking my place.

When I first discovered the world of blogging, particularly those with a premature baby aspect, one of the most important posts I read was this one by Beadzoid. It very much spoke to me and in my dark moments when I felt very alone, offered a chink of light that someone had had similar worries to me, and if they hadn't been certified then I wouldn't either.  

This week, Wriggles is in temporary childcare; not an ideal situation but a necessary evil as she will only try and eat the printer at work. She has started to cry when I leave and I am told, stand by the stairgate for a while after looking out. It breaks my heart and I smother her with guilty kisses on return. You do care. I'm so sorry I doubted you. I'm not leaving you. I love you. The minute we are home, she scrambles away to explore new worlds and hoot down toilet rolls. Then out of nowhere gives me a big hug or grabs my hand. Then the spell is broken and she is off again, but I am revived.

Oh, to be a parent. You just can't win either way.

All in the Mind

The human mind is incredible.

 

It is such a sophisticated thing and the most sophisticated thing is, you can't even see it. You can see the brain yes, and really clever people with whizzy machines might be able to see cells and neurons but what does our mind, our thoughts, our intellect and personality look like? Does it look different if we are ill or sad?

Mostly, the mind is incredibly clever and benevolent.

Sometimes it is also incredibly cruel.

You only have to turn on the news to see what human thinking and consequently actions cause sometimes. It might be one person or a collective. It might be one spark or a long thought out plan. And less newsworthy, people out there every day struggle with mental health when their mind is not 100% their own. It might be fleeting; it might be lifelong.

After my recent wobble, I have been feeling so much better for having some time off work with Wriggles. It really helped me reaffirm myself as Alpha Mama (alright, then: a mama at least) and in that month, I did more mum-friendly and social things than I had in over a year. I returned to work as I knew then that redundancy was imminent in around 6 weeks and figured that I could do that, knowing there was an end. I hadn't given up the idea of continuing working if something else came up and I could find appropriate childcare and I was getting maybe a little cocky thinking I had put the worst behind me. Largely, I think the "worst" is behind, just the tough bit that is easy to forget is that there is no magic moment when your feelings go away in a puff of smoke. Nothing has to happen for them to creep back out again from where they have been lurking, but sometimes they sneak up unexpected and uninvited as if to remind you who was once boss.

I had a silly hour or so today. It wasn't quite a panic attack, but was unsettling to say the least. I had a rare few hours apart from Wriggles; we had a lovely lunch together (eaten: one fromage frais, a dollop of banana & custard, several rice cakes, the corner of my panini and some multigrain hoop-type-snacks) and I dropped her off at the creche. She barely looked up, having befriended one of the staff instantly. I kissed her, once, twice, needily three times and still she didn't flinch. Off I slunk, with my tail between my legs and my metaphorical ears wilting.

She doesn't love you.

The thought hovered in my head. I furiously brushed it aside.

She doesn't care.

She's just independent. And sociable and friendly and a toddler for chrissakes. They all go through mad phases.

You keep telling yourself that. How do you even know she realises you're her mother?

All babies know their mothers. She would have known my voice, my smell. She settled with me and fell asleep in my arms.

She was born early not long after developing those senses and lived in a plastic box for two months.

That didn't stop me loving her and telling her I loved her. And once she came out and came home, I didn't stop holding her and being as mothering as I could.

I'm not talking about what you feel. She wouldn't care if you walked away now. If you went and never came back. She'd be fine. She'd still smile and giggle and laugh. How do you know she would miss you?

How do you know?

Would she?

I wish sometimes there was an off-button to silence minds.

As anxiety and growing hysteria with a growing conviction I was unwanted swept over me, I could feel myself getting light headed and shaky. Walking past a window confirmed I was as white as sheet and looked peaky to say the least. I honestly thought I was going to collapse with the intensity and was terrified that after all the good work of being able to separate mad brain from normal brain that I was falling back fast into a barren and bleak pit of despair whereby I couldn't control my grasp of my little world.  

Thankfully, my more conscious and rational self came back not long after it had left and banished any such thoughts, focussing firmly on what was happening right that second (wandering round IKEA, a task impossible with a small noisebag) and the knowledge that soon I was going to be back with Wriggles and she would be happy with that.

And indeed, she was. I picked her and smothered her with kisses and she happily held my finger on the metro home. We "fed" her toy cat rice cakes on the way back and she squwarked with mirth. I was once more myself and let out a sigh of relief and contentment. Now, surrounded by my things with my daughter sleeping softly in the next room, I know all is well. 

A blip. 

A silly blip. 

Philosophically, you could debate the notion of love, relationships, parenting, nature and nurture but I know one thing: I have a very happy little girl and happy little girls do not stay happy without love. Little girls who do not care are not full of smiles and contentment. They do not blow kisses or offer to share dribbled-on breadstick. They might scream and try to climb in the bin and ignore all authorative "No"s and happily climb on anyone's lap, but that does not mean indifference or dislike.

I've got so many happy memories with her, and I hope she has too. I know memory is far less sophisticated in the very young, but I hope somewhere in there, there are recollections of moments prized. I'm not, in them by default as the only parent there day in, day out I hope but because I have earned my place and my reward of my daughter's affection as I have loved her to the ends of my ability and further every day, and done the best I possibly can by her. I may not be perfect, but I will bloody well try to be for her sake. (Allowing bin-and-toilet-climbing excluded of course. That will stay not permitted, however many tears it produces).

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.

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.

Cardigan

Today I went to see the psychologist I have known since neonatal who has given me counselling and been somewhat of an extra helping hand for me. At low points in the past she has taken charge and sorted things out with my GP to kick-start more help and has offered in the past to help with things in a non-professional environment like watching Wriggles or doing some ironing. We get on well and I think she takes joy from seeing Wriggles growing up into the menace/delight that she now is. I told her how I had been feeling recently again, and we talked about ways to try and un-knot the knots that are stopping me in my tracks. She referred to them as "grounding" and a cross between meditative exercises and a comforting device. 

Letting Go

As silly as it may sound, I am afraid of letting go of the past. Despite the pain and disruption that neonatal and PICU have caused, I am scared of forgetting them and moving on. They are such an important part of our lives and whilst caused unimaginiable hurt, they also made me intensely grateful and changed the way I look at things now. They are so integral to Wriggles' journey and health, how can I just write the experiences off? How can I move on when they can loom so large?

Because things are different now.

Because this:

Is not this:

Cuckoo?

Although it is more of an "acceptable" subject these days, mental health still holds something of a taboo. It is not one to be discussed lightly and can be a minefield of political correctness, ignorance and compassion. We're all guilty of claiming to be "depressed" when the washing basket is too full, "going mad" when it's been a bad week or five or "traumatised" over losing something but none of these really go anywhere near acknowledging how it really feels if you are genuinely battling with a mental illness. Mental illness sounds terrifyingly serious. It describes a huge umbrella of things in varying severity, many of which can be recovered from and escaped. I don't think anyone ever expects to become a sufferer or a loved one to succumb. Until you are gripped by one, it is very hard to fully understand being controlled by thoughts and emotions, many devoid of reason or rationality.

There can also be such a fine line.

When do the baby blues turn into postnatal depression? When does grief turn into depression? When does shock turn into post-traumatic stress? When does worry turn into full-blown anxiety?

I cannot speak for everyone, only from my personal experience. At present, I am currently signed off work for a small period following over a year of dealing with post traumatic stress, depression and anxiety. In the main, I have largely been able to control these with help from sertaline (a selected serotonin uptake inhibitor, or SSRI drug) and a course of counselling. There have been low points certainly but so far I have been able to juggle things even if that means really struggling. Lately though, the struggle has been getting harder. Motivation and concentration have gone out the window, and I have been exhausted. My mind has spiralled into a whirlwind of pure emotion, little based on fact. It's not something visible or that people can necessarily understand, which I have found the hardest part. It's easier to joke about loosing your marbles than it is so say "I really, really need some help."

I don't know whether the feelings started from a difficult birth and extended stay in Neonatal, but they certainly grew at an astounding rate shortly after discharge from Paediatric Intensive Care when Wriggles had pneumonia at 6 months old. Then I became quickly swamped, and whilst I could muddle through in the day, when Wriggles was in bed and separated from me, I became a mess. I couldn't eat, drink or sleep, let alone do the washing up. I would sit, glued to the sofa because I felt too leaden to move. I was in a perpetual state of hyper vigilance, waiting ears pricked for disaster to loom again, and would cry silent tears and become surrounded by flashbacks and nightmares of my daughter in distress. The relief after admitting how far things had come was huge. I was told it was a form of post-traumatic stress. Granted, it wasn't going to be the severity of soldiers from combat or people who have suffered horrific abuse or ordeals but in my little world, my family had been rocked as I had stared bleakly at the prospect of losing my child. I was started on sertaline and began counselling in earnest with a wonderful psychologist who had had a premature baby herself previously, which acted as an excellent bond and feeling of trust that she knew what I was going through. With support, the acuteness and rawness began to fade and I began to gain confidence and relax. Daytimes became better, where I could revel and immerse myself in Wriggles without inhibition and slowly I re-learnt to be "normal" at the end of the day and enjoy working. Unfortunately Wriggles had other ideas and an admission lasting nearly a month and enduring a mis-diagnosis of queried brain damage with an unsafe swallow triggered everything off again. I regularly would "hear" the noises of the ventilator and alarms going off and would burst into tears at anything. Thankfully, I was in good hands and able to get back on track with the healing process and shaking things off before a welcome break in the hub of my family over Christmas.

So what now, five months on? Where did I slip again when it was all going so swimmingly? Wriggles is 19 months today, it is just a year yesterday since leaving the hospital after our PICU scare and she is blossoming all the time. It isn't as simple as accepting things are better and consequently getting on with things. It isn't as simple as processing memories. I suspect that like everything, it needs time and these are relatively early days. I imagine also the sense of responsibility and physical demands of being the sole carer as a single parent have not helped, draining me of some energy and quickening the need for maturity and stability. Of course I wouldn't have it any other way, and I would do it all again to have my little girl with me. But once you have been gripped by the fear, it is all too easy for your brain to muddle up facts with emotions and responses with feelings and turn a vulnerable mind into a seemingly random generator of reactions. Depression and anxiety can be bred from post-traumatic stress, they can be there independently. It is beside the point how they got here for me, only that they are there and it is the physical symptoms of them which made me go to GP this week and resulted in some weeks off. It isn't as easy as pointing at a specific memory and saying, "yup, that one there. Zap it" as it is far more complex, especially as some upheaval and work-based anxiety is very much playing into this at present. It wasn't easy admitting it this time and agreeing to take time off. I have been encouraged to in the past but always declined partly for feeling it would be selfish. Yes, it is my responsibility to keep our heads above water financially. But it is also my responsibility to make sure I can care for Wriggles to the best of my ability to ensure that she remains the happy and healthy toddler she is. 

I am confident I can return to being myself, i just need to harness this blasted anxiety and stem the flow of overpowering emotions that come from memory which will enable to me to clearly deal with everyday worries rather than letting them get out of control and taking on exaggerated and fictitious fears. Much of the feeling is a peculiar form of grief and guilt. One blog I enjoy has put this into words better than I can here. It feels wrong to use the word 'grief' without reference to a bereavement, as I am acutely aware how lucky I am not to have had to deal with such and my heart goes out to all that sadly have. The feelings are similar though, and in my experience can stun you into a sense of separating from the rest of the world. Asking for help and admitting that I can't just lock a box of the past away has been one of the hardest things I have done, and I am not naive enough to think it will all just magic away and that there may be repercussions in how people tread in the future. But that is another day. For now, I am looking after Wriggles, and looking after myself *puts kettle on".