Contract and Expand

“How are you feeling?”

“Okay really”

“No, how are you really feeling?”

I feel there’s watchful eyes all over me. I actually feel reassured by it. I can understand why. I am a woman that insisted that they get my baby out because I couldn’t live with the solitude in the fear of his death any longer. I screamed that he’d died in labour.

But now BD is here, I slowly feel some of the weight of fear melt away. I’m not saying I’m not suffering from some outstanding crazily hormonal moments. I can hear Wolf shouting an AMEN to that. And the recovery from a fast, painful labour and an over production of milk has left me achey and exhausted and thoroughly fed up at times. But. But.

From May last year the testing began to see if I could be the kidney donor to save my son’s life. We knew the potential was there. I held that responsibility, and ultimately I have carried the responsibility that we decided in light of RD’s health to halt the process. I have held on, and held on.

Eight months ago, as one life ended and another was discovered, I have continued to hold on. My body responsible again for keeping another life alive, bearing it to fruition. I could barely scrape at the fear, I just continued to hold on. Another hour, another day, another week.

We have gone from a family of four.

To a family of three.

To a family of three with a dog.

And now again, we are a family of four. With a dog.

Contracted and expanded. But forever changed.

Very kind people tell me I look really well. It took BD and I two hours to get round Marks and Spencer’s the other Tuesday, a fascination with this tiny little soul strapped to my chest. The fact he was five days old. The disbelief I was wearing lipstick. But what I couldn’t say was this: yes I feel okay. Good in fact. Because my labour started the release, and I am still releasing.

Every drop of breastmilk that he takes, I feel the fear let down simultaneously.

I’ve been congratulated on my weight loss. And psychologically, having my own body feel like my own again so soon is healing. Literally a weight lifted. But it is borne from a pregnancy full of so much anxiety I lost weight. Fear has made me thin. So now, as my appetite returns, I enjoy the feeling of pinking up and plumping. A little regained control.

As I contract, I expand with feelings and emotions. When you’re holding on, everything gets held back. I worked. I studied, and completed a diploma. But I knew I was only poking at the heartache for RD. Now, tears are released too. Held back for too long, brushed away too quickly before.

Babies born after loss are referred to as Rainbow Babies. They appear after a storm. And sometimes I am happy to think of BD that way, but it’s more complex than that. RD wasn’t a storm. He was full of colour and life. He IS the orange in the rainbow if you ask DD. BD is a rainbow baby because he is returning some of that colour to us after the grey static of holding on.

Vote For Me?

From the minute you wee on that stick, or multiple sticks, in that heart pounding moment you wonder who or what is going to happen to you. You, as the individual, is suddenly growing another. Your body, your mind, your relationships, your identity. You know for sure that change is a coming.

No matter what happens, having both experiences, you are changed in those three minutes.

Susie Mesure has written an article this week which feels like a ham fisted attempt to neatly divide mothers into tranches, and a review of what being a “mummy blogger” seems to mean to her. To be honest, I struggled to find a point, and mostly it boiled my p*ss. I found it patronising and divisive, praying on those insecurities we feel at the moment we lose our pelvic floor and our sanity.

More than that, between alpha, tiger, smug and fml mums, there is no mention of the children. That they who shape us are less than our reactions. What’s that expression? Be kind for everyone is fighting a battle you can’t see.

But I’m thankful of it as a platform. A moment to consider what I share and portray, what I tidy the edges on, filter and gloss. I’ve been nominated for this mumsnet award you see, for Best Campaigner, and whilst I am honoured and flattered, I wondered how I ended up there. In that camp, with amazing women who campaign fearlessly and doggedly. I probably should have tried to be funnier. What I don’t want is for Best Campaigner to feel like shorthand for Really Sad Story in our instance.

One of the things that I’m having to come to terms with now, after RD’s death, is that I’m no longer a mother of a disabled child. A parent carer as I so often would have to fill in on forms. That now, in a snapshot, the years of day to day care; nearly 6 years of broken nights, tube feeds, medicine measuring, nappy changes, therapies, have gone. It was and is a badge of pride, all that my beautiful son taught me. So now my identity feels so altered. And we bought a puppy so that we had more broken sleep and conversations about poo.

It’s made me realise what I’ve campaigned for. And will continue to. Disability and all I thought I knew petrified me when pregnant. When I realised that I would have 100% responsibility of the child inside of me; but what if that was lifelong and unending? There was no reason to think it would happen to me, to us. But it did, and I will be forever grateful for all it taught me. Patience, compassion and some serious black humour.

I believe it taught me how to deal with baby loss. In an effort to not sound mawkish, I will just say that being grateful for life was and is where I try and find my way back to from the gaping hole of loss. There is a type of grief that you experience as you move from the loss of What You Hope Your Child Will Be to acceptance of the diversity from that. It isn’t comparable to the grief I feel now, but certainly touched the same places of heart and mind.

So, I will continue to campaign the concept that whatever happens, it will be alright. That your universe can be knocked off its hinges, but you will find your way back to you. Reach out, learn, support and all will come full circle. And to wear your favourite lipstick. Because right now, it’s what I most need to tell myself, sitting in RD’s room. In clothes that are only a hairs breadth different from pyjamas, holding his clothes to my damp cheeks. That I’ll one day find a way back.

Whilst writing publicly isn’t all heartfelt altruism, I do really hope that by sharing, by writing out loud how this is and how it will continue, will help others.

My life, changed but not defined by grief.  Vote for me?

3 – .6 = 2.4?

They say things happen in threes. I’m not sure why. I’m fairly sure when things go tits up I stop being able to count. Because clusterf*cks generally contain a billion issues going awry. Maybe if I took the time I’d realise that the minutiae break down to a multiple of three. I think it’s supposed to give you hope that if three shit things happen in a row that that’s you done. Just don’t cut your nails on a Sunday, or put new shoes on the table again.

But really there were three things. Three things that as I sat there on Mothering Sunday I tried to hold back the rising cold of sadness. Two babies gone, and one child’s health now showing signs of rapid decline. Those three things were the lynch pins. The crashed car, the missed train, the diverted flight just another trio of the week. A late school taxi, an officious security man on baggage check and the spillage of shower gel over the contents of said baggage another. Spirals within spirals.

I think only Pete Tong could understand just how bad it all got. Well if he then got the lurgy. Because I’m now also in my sick bed. I’m sure I could also group that with another two things but I’ve got major brain fog. 

Sat in the hospital playroom on Sunday awaiting yet another set of blood tests for RD I thought back to before I was a mother. The naivety. Not just that this job would be hard and relentless. I mean, I could guess at that. Or how many people would call me Mum even though I’m pretty sure I didn’t grow medical professionals in my womb. But just how left of centre it could go. I wanted, I still in lots of ways, want three children. And I’ve created four, we’ve created four. 2 + 2. And now one is in danger. 

We’ve known from 8 weeks that RD’s kidneys would go at some point. But as goalposts moved, and we were graced with far longer than anyone anticipated, you can’t help but wonder if actually it was true. And we’ve been lucky that whilst the extent of his disabilities unfurled, his kidney function was relatively static. But that luck has meant this has left us breathless. Trying to firefight his sky high urea. Filling in forms that ask me how much I drink a week. Knowing that from now on either the phone could ring with the news that a kidney is ready. Or in six months we’ll know whether one of mine is a good enough match.

I remember though that we are at this point because we have fought, and will continue to fight for RD. In the face of suggestions of palliative dialysis. Of firefighting until his time was up. Questions as to what makes up a quality of life. Living, that’s what. And that makes me proud to be the mother I am. A grafter and a fighter. A painter on of a lipstick smile.

  

Dirty Little Secret

Relishing the early weeks when only you and your partner know your special secret.

                                                                                                                                    http://www.babycentre.co.uk

I’m not really supposed to talk about this. Not the done thing is it? For seven days I’ve known my secret has altered, changed, ended. And it could forever stay that way, a secret shared between loved ones. I’ve worked, I’ve mothered, I have continued because I knew of no other option.

I’ve answered the question “So, what number pregnancy is this?”. “Four.” 

“And how many children do you have?”. “Two.”

So now the gap widens, and yet, who can I share this with? 

My first dating scan, I knew what I should see. 10 weeks, a little alien punching and fighting. A heartbeat, so strong and fast. From the outside I looked 10 weeks pregnant. But from the inside, silence. Stillness. Not the right size. Again.

In my head, placing the pain on a sliding scale. 

Being told your living child will most likely die. WORST.

Finding you’ve lost a baby at 20 weeks. NOT AS BAD.

Finding you’ve lost a baby at 10 weeks. BETTER?

Stupid fucking sliding scale. It all fucking hurts. Trying to comprehend the pattern. Annoyed by my optimism this time. No rainbow, no pot of gold. Just a carrier bag full of rotten potatoes. Then an appointment for 10 days time, to decide what to do. Just in case, but no one is in any doubt. I ask the room for what I should do with myself for 10 days, in this isolated place. I imagine running away. I really think that through. I don’t want my children to absorb any of this pain. What do I tell people? Will my false smile slip?

But no one knows. It’s up to me. Fabulous.

And more yet, they think they know why this is happening. To all of those four pregnancies I’ve had. A name of something written on paper. In a marvellous irony, it is illegible. So I ask her to sound it out. Commit it to memory, unaware that it will bring some peace.

We hold hands on the way back to the car, struggling to find words. But all I can ask is what can I do? What will I do? 10 weeks disappears. 10 days feels like an eternity.

Seven days in and my body is making its own call. The process has begun, with equal measures of sadness and relief. So far, no intervention necessary. Not such a special secret.

  

Big Fat Shiz of the Year

Given that it’s been a remiss year in the writing stakes, and that all New Year Eves since 2010 have been less about a sweaty queue at a bar and more about lying around like melted cheese on the sofa, I thought I’d try and use that time more constructively.

Plus I did one of those Big Nine 2015 things, and I almost didn’t recognise the year it showed. Probably because a big part of this year has been parcelled up and put on the shelf for me. Coping mechanism or passport to a Michael Douglas Falling Down moment at some point, only time will tell. If I could build a house of shit or sugar, I always choose sweet for there’s always far more to be grateful for.


Original Best Nine. See what the focus was… And where’s RD?


My Best Nine. Likes Schmikes.

We moved back to God’s Own Country. Well, back for me, but unchartered for the other Ds. New home, new school, new nursery. New hospital. A house to strip and change, make our own. A perverse amount of time spent in DIY stores- no cable ties or rope bought FYI.

I did that there bit of running. That was nice.

We settled in, found our feet. Took a holiday. Started the summer surrounded by the comfort of family.

Wolf started his PhD. I am often asked what it’s about, but the thing is, it’s like when you’re watching University Challenge. You know, it’s not that you don’t know the answers (unless it’s popular music or artists I’m screwed), or even that the question confuses you, it’s that bit where you’re not even sure what the words in the question mean or what they’re doing in a sentence together. In the past I must have convinced Wolf I was several echelons more intelligent than I am. Or maybe used the word echelons casually. So let’s just say it’s about architecture and leave it there.

But I’m proud, he’s given so much of his life over to be the main carer for RD so I can work. He even had an Elsa sticker stuck to his bottom yesterday without complaint. He’s a good egg.

Then we had the month of birthdays. A 5 year old, a 3 year old and a 20 week old. We celebrated and recovered. Slowed time down and got the balance back. Each day lasted an age and yet in the blink of an eye it was a memory.

I wrote about RD this year. Without intention, DD was left out. But she fills every day with such moments of sheer joy all whilst being a bit of an arsehole. I could regale you with minute by minute depictions of this. I’ll leave you with a taste.

“No No No NOOOO!!! I do it MYSELF”. Wrestles with activity. “I can’t DO IT” [briefly heartbroken] “Mummy, need a cuddle. Mummy, can I feel your boobies?”

My skin inked, I found closure and returned to life as before.

Christmas whistled around the corner and here we are. I saw Christmas through the wide eyed wonder of a three year old. We fulfilled the dreams of a five year old who may have zero interest in Christmas itself, but a foot spa with a big switch made his year. If happiness was the goal, Father Christmas brought it.

So time to look ahead. A year that has been life changing but not life defining leaves us with hope ahead. There isn’t a reason for Tiny not continuing with us medically, it was just one of those things. And, trumpet blowing warning, we’re pretty good at dealing with those things.

18 months ago it was only probably a year until RD would need a change in management of his kidney degeneration. So, 6 months over and still, the process is in gradual change. We ignore the goalposts and just continue to watch the game.


Letting Go

I hate how true it is that life can change so quickly in a heartbeat. Or one not beating, as the case so often is. 

We are who we are surrounded by, and I am lucky, because I am surrounded by family and friends that are true rock stars. And, this is completely unbiased and a fact obviously, my children win all the contests. They are the best. I am a realist: they would often win the accolade for best tantrum too. But I know our third child had this untapped potential too. And she certainly shifted my axis left of centre.

When I felt that rush of overwhelming fear and devastation on Thursday, it was made all the worse by knowing truly that I hadn’t even reached the nadir. That we had not yet reached the end even though she had. 

Somehow I got through the intervening time to take the first tablet, that would strip me of what my body was telling me. It was going to take away the desire to eat my body weight in salt and vinegar chipsticks and squash. Then the following day, feeling hollow and disconnected. And yet living the day reality of having my other children. School runs and toddler rage when asked to hold my hand. Knowing that Saturday could be the next day, or a week, or a month away. The day was coated in treacle.

By Friday afternoon, I had that burpy nausea that my instincts were telling me was more than anxiety. We went to the hospital, only to meet one of the incredible team of midwives that would make this journey nowhere near as I feared. She made both my mum and I feel that we were able to describe this as a bereavement. Previously, my baby, having died around 14/15 weeks, and yet been carried until 20 weeks straddled a divide of early and late miscarriage. Not that it should matter. But sadly, it does.

It wasn’t time though, but lifted by her soft words and concern, I went home rationalising that when the time came, I believed I would receive such compassion. And I wasn’t wrong. Bradford should be proud.

Just before bedtime I had a bleed. My incredible parents jumped to action, coming to stay with our children and kindly driving us to the hospital given we’d suddenly forgotten the route.

Just a procedure now, we knew that. Sat in an overly bright room, I studied the cot in the corner. Too big. The cupboard knobs that didn’t match. The NHS ice cream yellow walls that have become part of our lives. We shared little jokes. Looks that needed no words.

The next few hours we were treated with unbelievable kindness. In a fug of pain relief I slept fitfully through contractions, not realising the time had come. Careful and hushed conversations about what we wanted to happen. I didn’t want to see straight away. And calmly and quietly our baby appeared with a few light pushes. The midwife spoke to her carefully just as any other baby. Told her what she was going to do, where they were going. Gracefully administered my medication and cleaned me. Took her away, where I knew she would be cared for.

She arrived back in a bread basket sized Moses bassinet. Carefully wrapped in two hand knitted hanky like blankets. She looked degraded, that was true and otherworldly. But also peaceful. And as the midwive gently folded back the blankets we saw that she was perfect. She had the long fingers, legs and feet of her siblings.

  
And that was enough. Hand prints and foot prints were made. We had that delicious post labour tea and toast, talked about how the grief felt at that point and fell back asleep. The fear had gone. The grief had shifted. The overwhelming sadness remained but the anxiety had dispersed.

Now I am here, allowing normality back in. Being caught by grief. Waking up and having to remember I am no longer pregnant. Dealing with the reminders that I was; blood, engorgement, medications and f*cking compression stockings. Knowing that people can’t see the scrambled egg that sits where my heart should be from the outside.

October: the month of anniversaries. Our wedding. And now the births of all three of our babies, due dates irrelevant.