In What or Whom Do You Trust?

As much as we might like to kid ourselves otherwise, we do not have complete control over everything in our lives.

Instead, we hold hope, faith, wish for luck. We trust.

Without trust, our society, our lives would be very unpleasant indeed. We trust our partners and spouses to remain faithful.

We trust our children to behave themselves when out on their own, or with others.

We trust that when we get in to our car to drive somewhere other drivers will safeguard our lives by driving sensibly, obeying the rules and laws.

We trust that when we go to work, we will get paid what we are owed at the end of the month.

We trust that when we go to sleep at night, we will wake up the next morning and carry on with the day we had planned. Not having trust in these things would make life pretty challenging, wouldn’t it? We would always be on our guard, suspicious. We might be disinclined to leave the house. Doesn’t sound like much fun to me.

Trust is good. But trust means letting go. Something we probably don’t trust as much as we should is ourselves.

We have forgotten to trust our instinct, to trust ourselves to make the right decision. We don’t let go. Of what others think, of what we feel we ‘should’ or ‘shouldn’t’ be doing.

We choose not to trust our individual nature, instead steering ourselves towards conforming to norms dictated to others.

But sometimes we trust too much. We put trust in people who are undeserving. People who have hurt us. People who hurt us again, and again. We submit to the plea to give just one more chance. We do not trust our instinct, we ignore it, pretending that we can have a future with someone who is not worthy of our trust. Most of us will have given our trust to someone who doesn’t deserve it at some point in our lives.

We need to let go, but know when to reel it in.

A fine balance indeed.

We can put too much trust in expecting there to be an infinite amount of tomorrows.

Putting too much energy in to worrying about things, what we’ve done, what we should do, what we would like to do. Thinking about regrets rather than aspirations.

But we cannot be so fearful of there being a limited amount of tomorrows that we forget to live. Not to just exist, but to live. Really live.

In whom or what do I trust?

To be honest, I don’t know. I trust in people following our society’s everyday rules, that harm will not come to me when I leave the house, but my anxiety would like to tell me otherwise. Anxiety, expecting the worst is exhausting. I try to control it rather than it controlling me.

I have to trust.

I have learned to let go, to not care too much what others think. I try to trust myself: my instinct, remaining true to my nature. I am learning, where my trust is invested most wisely.

These investments offer rich rewards.

The hardest lessons to learn are those where my trust is not deserved. Those lessons can be learned only the hard way.

I trust that when I go to sleep at night, I will wake up in the morning and that I will go about my day as planned.

But my life has shown me that the universe does not always play by the rules. The universe can take your trust, rip it up, stamp on it, spit on it.

The universe doesn’t always care about what you have put your trust in. Where your hopes are stored. What luck you hope for.

Another important lesson to learn.

So, what do I do?

I try to be kind to myself. I tell myself that I am permitted to be furious at the hand I have been dealt.

But I also try to remember everything that is good. To be grateful for the time I had with Hugo. To be grateful for my family, my friends. To be grateful for the skills I have, for the positive contribution I can make on the world with Hugo’s legacy.

Remembering everything that is good, having hope, doing everything I can to truly live helps me to keep going.

Remembering that I have kept going when I could easily have hidden under my duvet.

Remembering that there is hope inspires me to never give up.

None of us knows what might happen even the next minute, yet still we go forward. Because we trust. Paulo Coelho

I am not especially religious. I believe there is ‘something’, particularly since Hugo died feeling that there is an ethereal something, someone looking after him is a comfort. Feeling that Hugo is still with me, us, is also a comfort.

But I do not subscribe to a particular religion, or believe there is a ‘higher purpose’. For me, never giving up means trusting in the future.

It means trusting that while the past cannot be mended, things can never be put right, the future can bring happiness and joy.

When the past includes such sorrow, trusting in a positive future in an uncertain world is faith indeed.

#MatExp Flaming June – The Fire Burns On!

June was a month of action for the #MatExp campaign. It was well-named, being so busy I think I could see smoke!

The month got off to a flying start with the launch of the website, the Facebook page, people sharing their action selfies – and so much more!

Women have fed back that:

• They want to be treated as an individual
• They find terms like ‘low risk’ and ‘high risk’ unhelpful for a range of reasons, including that life is rarely black-and-white, and managing expectations.
• They understand the evidence behind advice and practice, and do not want to be preached to. They want to be engaged in conversation as an equal, listened to with compassion and empathy, and helped to understand in a way that is useful to them where necessary.
• Language is so very important – the words that are used are crucial, as is the intonation and the order you put words in a sentence (eg open questions – “Would you like…” “May I…” rather than “You must…” “I am going to do this to you…”).
• Better efforts are required to meet the needs mums whose babies are being cared for in neonatal units – while the mum is in the postnatal ward, and after discharge to make sure she does not miss out on the usual postnatal checks, as this can often fall between the cracks.
• Parents who have experienced the death of a baby need better access to support – too many parents are currently left to find their own support, or have to do without. This is unacceptable.
• There is a lack of support after birth trauma. Mums have said they’ve been told to ‘get over it’, their experiences invalidated. This is also unacceptable.
• More consideration needs to be given to birthing environments. For example, midwife-led centres seem so lovely, with attractive furnishings – and they seem especially lovely in comparison to many hospital labour wards. It can seem like giving birth in hospital (often the only option for ‘high risk’ women) is a punishment for things outside our control! Would it be possible to make hospital labour wards a bit homelier to reduce the disparity? It could help reduce some of the polarisation of opinion about where is the best or safest place to give birth (the best or safest place to give birth is the place that is appropriate for the woman and/or baby’s individual needs, whether than is in hospital, an MLU or at home).

#MatExp is growing from strength to strength. I haven’t had a proper ‘day off’ in ages (there is always something to tweet, something that makes me think “ooh that would be good for #HugosLegacy or #MatExp) – but I am so very proud of being involved in this change platform.

Gill (@WhoseShoes) has written in more detail about change platforms on her blog. I’ve borrowed this image from Gill’s post because I love the analogy. #MatExp really is like a bazaar – full of all sorts of people doing all sorts of things at once; slightly chaotic, full of ideas, activity, buzz, noise – ENERGY!

#MatExp definitely isn’t a cathedral – we don’t follow one particular leader, we don’t follow particular processes, we don’t follow a particular structure – and we don’t talk in a respectful hush.

Please do get involved! It is everyone’s business. Getting involved in #MatExp is like a no obligation quotation. We understand that life ebbs and flows, the time you have or are able to commit will fluctuate. There might not be anything that piques your interest now, but who knows what might happen next month, or in six months’ time (we certainly don’t – we’re making it up as we go along!).

We encourage people to find a way to engage that is relevant to you, where you are in life, the time you have on your hands.

For example, my lovely friend Jennie started a Charity Chat series on her blog, and information on recommended books for children dealing with grief. So much support is out there but it can be difficult to find. This will provide an invaluable resource for other parents and families.

Do also have a read of Flo’s post with ideas about how you can get involved.

How was FlamingJune for me? Thank you for asking. It was…busy! Very busy. My other half became unwell, which coincided with my return to work after a 15 month absence.

As well as that, I managed to squeeze in:

• Co-hosting a #PNDHour chat about baby loss,
• Talking about my #MatExp journey at an SCN event,
• My action post – #saytheirname appeared in the Huffington Post,
• My post about what I wanted the National Maternity Review to know was Mumsnet’s Blog of the Day.
• Talking (with lovely Susanne) about MatExp at the BritMums Live conference and being deluged with interest!
• Maintaining my own blog,
•  A wonderful week’s holiday in France (and it’s little wonder I needed to sleep so much during the holiday!).

So that’s Flaming June, in a nutshell. Has our fire burned out? Goodness, no!

What women (and men!) have told us spurs us on, our fire burns forever brighter.

For my part, I am going to continue encouraging people to #saytheirname; to talk about Hugo’s story, and the learning from that; to help reduce the taboo surrounding baby loss; to talk about #MatExp to anyone who will listen.

There are also some exciting ideas in the pipeline. My personal favourite is the possibility of colouring books – to help relieve stress and anxiety, as well as a way of conveying vital messages about pregnancy and related issues to women.

With passion and determination we can together make a difference to the experience of women and babies in maternity services across the country – and to the experience of staff who care for them.

Preparing to Face the Fear

What do you do when faced with having to do something you fear?

a) Fear? What’s that? I fear nothing!

b) Run away!

c) Hide and hope it will go away.

d) Face it head on – show it I’m not scared!

e) Do everything you can to best prepare for everything it may present you with.

Really, I suppose your response is going to depend on the situation. For example, I am terrified of spiders so faced with a huge one of those my response would be b. Run away, fast. I’m someone who thinks people who call the emergency services to help them deal with an eight-legged fiend in their home are perfectly reasonable.

Anyway, this is not a post about my arachnophobia. The fear I am facing is returning to work next Tuesday. Saying it’s a fear sounds strange. It’s not like it’s something that makes me jump in terror like seeing a big spider scuttle across the floor.

I have been away from work since early February, 2014. That’s a very long time. In that time, Hugo was born, Hugo lived, Hugo died. I had to recover from my illness. I had to find support to help me deal emotionally with my illness, Hugo’s too-short life, and his death. It took me a very long time to find that support, and in that time I developed coping strategies that helped me survive but that were not conducive to being out in the big, bad world. Those coping strategies involved being in control. Staying at home, usually; it felt safer. Controlling who I saw, spoke to and when.

Finally, the support I needed transpired. Another tough journey, scabs torn off, wounds reopened. But progress made.

An acknowledgement that any progress is good. Self-compassion, self-care. I have to be kind to myself. There is no cure for grief. This is forever.

Eventually, finally, I felt as ready as I ever will be to return to work.

And what is there to fear, rationally? It’s only work. It’s not like I’m in the armed forces, in the firing line. I work in a hospital, and not on the front line.

The problem? I will be returning to work with a couple of new companions: grief and anxiety. They can take up lots of energy, needle you with self-doubt, taunt you by sending you in to a spin of a deep, dark, mood.

Frustratingly, they do not understand rational thought. Telling myself there is nothing to fear does not remove the fear.

So, I am focusing on option e. Doing everything I can to prepare.

Being compassionate towards myself for those times when grief or anxiety take over. Making time for self-care so I have more positive energy to help cope with the dark moods. Teaching myself to resist negative energy, to focus on what it is important, to know my own limits.

Remembering that one step, one day at a time is all I need to do.

Remembering that I have dealt with so much worse in the past year. And survived.

Remembering that I work with so many wonderful, kind, compassionate people, many of whom I am proud to call friends.

Remembering that by remembering my self-care and self-compassion tools, I can remain in control of many things.

Remembering that some people will not know what to say, meaning that they may look at me like I am a leper, ignore me, or say the ‘wrong’ thing. That does not make them bad people. I have handled all sorts, I can handle this too.

Remembering that moving forward with my life does not mean moving on from Hugo. Hugo is still with me. In my heart, in my mind, his legacy in everything that I do.

Remembering that this is a landmark moment marking the end of the most beautiful, the most harrowing, the most wonderful, the most heartbreaking, the most eye-opening, the most challenging period of my life.

Remembering that while I wish with every cell in my body Hugo was still with me, I am the stronger for everything that has happened.

Preparations for facing the fear of what is next. But knowing that surely, what is next can never be as bad as what has come before.

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Word of the Week: Preparation

Prompt word: Fear

Sunday Thought May 23, 2015: Giving In is NOT the same as Giving Up

Ever felt like you just want to hide under your duvet and never emerge? Like you want the world to just go away and leave you alone?

Me too.

There is a popular motivational quote by Regina Brett:

“No matter how you feel, get up, dress up, show up, and never give up.”

I agree with this quote on most days. Reflecting that I am fortunate to be alive, that life is short I usually get up, make myself presentable and show up – on my blog and on social media at least, if not in person.

I’ve done the getting up, dressing up and showing up thing even when I really haven’t felt like it. I should have given in to the urge to sit on the sofa, watch rubbish TV, read a book, or do colouring-in.

Instead, I carried on working away, putting pressure on myself, feeling guilty if I wasn’t doing something productive, constructive. The guilt was even more acute if I was doing something that did not directly involve Hugo’s legacy. There have been times when I have felt guilty for enjoying myself.

It has taken me some time to realise that giving in is not the same as giving up.

No, not by a long shot.

There are plenty of days when I have not felt very sociable. I have stayed within the controlled environment of my own home, but engaged happily enough on social media and on my blog.

There are some days, like yesterday for example, when I didn’t want to be on social media. I felt very low and thought it best to stay away rather than pretend to be cheerful, or whatever the online equivalent of putting on a fake smile is.

I was low because of a rollercoaster week. So, I indulged in some self-care with a magazine.

The magazine part of the self-care didn’t last very long because the cat wanted to help me relax. Her idea of helping me relax is to lie on me and get me to fuss her, leaving no hands spare to hold the magazine. I don’t mind though of course, fussing her and listening to her blissed-out purring is one of the best-possible forms of relaxation.

Today, I am happy to report, I feel brighter. Recharged.

The lesson is it is ok, acceptable, fine to give in sometimes. There is so much pressure on us to be all things to all people. To be happy all the time. To always be ‘ok’, grateful for who and what we have, who and what we are. To be go, go, go.

Trying to achieve these impossible ideals will only make us unhappy, stressed out over time – not just for the bereaved. It works for all of us.

So, taking inspiration from Regina Brett here is my thought for the day:

I even treated myself to a new pink lipstick, which also helped put a smile on my face.

There is no easy fix for grief, anxiety, or any such complex emotions. They are not easy to control. But I do whatever I can to make sure to help balance out the negative emotions with a bit of positive energy.

Life After…The Neonatal Intensive Care Unit

Raising awareness of issues affecting premature babies and their families is something I am very passionate about. I am pleased that today’s Life After comes from wonderful Catriona of the brilliant Smallest Things, which is focused on campaigning for babies born too soon. Here, Catriona writes about what happened after her first son was born much earlier than expected, and his stay in the neonatal intensive care unit (NICU).

Thank you, Catriona, for sharing your story and helping shed light on the life of premature babies and their parents.

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I was just six and a half months pregnant (exactly 30 weeks) when my first son was born. I hadn’t got the crib in which he would sleep, no baby grows or snuggly toys and my maternity leave was still weeks away. I wasn’t ready, but he was in a hurry!

My waters had broken at home and I had calmly taken a taxi to the hospital. I was in a state of shock, perhaps also in denial – this couldn’t really be happening, could it?

When the midwife told me my baby would be born very soon I still remember my words – ‘But I don’t have anything to dress him in’. My first instinct was to care and provide for him. I reached out to him when he was born, but he was whisked away to neonatal intensive care where a machine would breathe for him and an incubator would shield him from the outside world into which he was born so early.

He spent eight long weeks in neonatal care; but for those eight weeks, time and the world seemed to stand still.

Our life became the neonatal unit. The monitors, machines, incubators and tubes. The nurses and doctors, expressing and sterilising. Bottles and boobs, numbers and charts. Eight long weeks and the outside world ceased to exist. Our world was in the hospital fighting and growing.

The relief of ‘making it through’, of finally getting there and making it home was damped by the growing realisation that I was a NICU mum.

It seems strange to write about life after neonatal care, when in reality the journey continues.

I struggled to reconcile what should have been one of the happiest moments of my life, the joy of a new baby, with the reality of trauma, resuscitation, life support machines and emptiness. Pangs of jealousy crept in seeing heavily pregnant women and new baby photos were suddenly everywhere I looked. Sometimes I was consumed with grief and anger at my lost months of pregnancy, the lost time to prepare and the lost time with my baby. For a long time I was haunted by a dull ache on my chest where my baby should have laid his head.

As time went by the anger and grief settled, helped in part by learning that I was not alone in these thoughts; indeed they are common to many women following birth trauma or time spent in NICU. The dull ache on my chest no longer plagues me, although sometimes I wish it did. Instead it has been replaced by something much more unpredictable and invasive – anxiety and post-traumatic stress.

For parents of babies born too soon the slightest cough or cold can cause untold worry. For me, coughs and colds are synonyms with repeat hospital admissions and breathing difficulties; all contributing to vivid flash backs of alarming monitors, breathing tubes and the mechanical rise and fall of tiny chests. This is the untold story of neonatal care and this is how life after NICU can seem for many women. This is why I created and set up the Smallest Things Campaign last year. I didn’t want other mothers like me to happen to stumble across a website in order to discover that the feelings they were experiencing were completely normal and shared by many others. Instead mums should be supported throughout their NICU journey and yes, this means following discharge home.

For me life after NICU isn’t really life after NICU; it is a life-long membership to the Preemie Club, a former NICU mum through and through. I am fiercely proud of my boys, both born early, and am in awe of what I have seen them achieve. Yet even when they are well anxiety and PTSD is always lurking in the background. The journey and life after NICU continues…..

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If you would like to share your Life After…story, please get in touch:

headspace-perspective@outlook.com