To be a mother

 I always wanted to be a mother. It was a choice I made and a choice that came easily to Andy and I , we know how very lucky we were to have been able to even have that choice.

Four children, each journey with them so different.

When Theo was born I assumed that babies just cried all the time and didn't sleep. Now I know that he has disordered sleep as a result of his ASD diagnosis.  Sleep....I remember wondering if I ever would sleep properly again.  With three children under 7 and heavily pregnant with Daisy I lay awake at night, my skin burning with the obstetric choleastasis that I developed in pregnancy, hoping that this last baby would be a good sleeper.

Of course Daisy took the art of not sleeping to the extreme, eventually needing a huge cocktail of drugs at night to help her sleep.  I lay in bed listening out for her, crying for mummy, a seizure or a cry of pain....

And now, I still can't sleep, now I have older children, my body and mind still listen out for them, and still I wake at night, this time to silence.

They needed me all the time, I wondered if I would ever have time for me again, that there would ever be time when I was tending to the needs of a small person, all needy, in their own little ways.

And now the most needy one is no longer here and the my others don't need me.  It's the time I wanted, time to myself.  But when you have spent half a life time being needed, putting your child's needs before your own, it's difficult to know what to do.  But they do still need me, not in a physical way, just to be present, to be available when late at night, my eyes heavy and wanting to go to bed they decide they need to talk, they need to know I'm there, the anchor, even when they are not here.

Empty nesting, it's very real. One in University, fiercely independent but yet indignant that she can't track my whereabouts on her phone, one working full time, who still likes to tell me about his life and plans, and one making plans for a new college course, needing me to buoy him against the crippling anxiety he feels. 

Motherhood never ends, it just changes. It changes you, each stage so different, that umbilical cord is still very much attached.

Even when they are not here. I am and will always be Daisy's mother.  I will always be their mother.  The mother of four, very much wanted and loved children. 

My body knows this, the folds of loose skin on my stomach the visible signs of the severe polyhydroamnios which were the first sign that something was not right with my last pregnancy, my chronic insomnia from nights awake worrying about them.

I'm still learning, this new stage, as a mother of older children, as a bereaved mother, I am learning what this means.

I glow with pride as I watch them make their way in the world, independent, resilient, determined.  As I remember my beautiful Daisy and the mother she made me, the love she gave me.

Mother's Day is always hard.  It was a choice I made, it was never going to be easy, motherhood is not easy.  I seem to have travelled a harder path but I wouldn't swap it for the world.

As always I send my love to those who so want to become mothers and can't, to those who are mothers but can no longer hold their children and to the mothers like me who continue to make it up as they go along!

Please don't tell me they passed away

I live next door to the local church and often take in parcel deliveries if there is no-one available at the presbytery to sign for them.  The other day I called over to drop off a box that had been left at our house.  A new priest answered the door, there has been quite a turn over of priests in the past few years so he didn't know me, that I was a neighbour , and I think he assumed I was the Amazon delivery person!

black and white picture of Daisy and Steph lying in bed together with Steph gazing lovingly at her daughter
We told Daisy that "Daddy died" so that she knew that he would not be coming back.

"Hi, I'm Steph" I said "I'm your neighbour, I'm also part of your parish" This is technically true.  I was until a few years ago still a practising catholic so I explained to him that I no longer go to church and he asked me why that was.

"Well, you see father" I explained "my husband died of cancer and my daughter died the following year. They both experienced a lot of pain and I have to question why a benign god would allow particularly my daughter to endure so much pain and hardship in her little life. I can't fathom it"

I know, I could have just handed over the parcel and not said anything but I was feeling quite bolshy that day and I thought it might be an opportunity for a good theological debate and maybe he might have had an argument that could have challenged me.

"They are both in a better place" was his response.....

Needless to say I didn't hang around to chat further (in fact he told me it was his day off and if I came back when it wasn't we could have a conversation about my faith, or lack thereof).

This blog post isn't about faith however. I have huge respect for people of all faiths and none, anyone who knows me, knows that and I would not seek to challenge someones beliefs, we all come to our belief system via our own path. No, what really set my teeth on edge was that phrase "they have gone to a better place"....does that mean that I'm in a rubbish place then? Does it mean that life on earth is really that bad for my family left behind?

I like direct language and communication, living with two boys on the autistic spectrum has taught me that nuance can lead to confusion.  Until Andy died I always avoided the words "passed away". I was brought up in a family where we referred to people dying, we did not use metaphors or euphemisms.  But increasingly I found myself saying that he had passed away, I even used it in blog posts and I began to question why someone who was so direct in their speech was using this indirect term to describe what had happened.

I realised that what I was doing was mirroring other people's language in order to protect them, to soften the blow.  People continue to be so taken aback and shocked when I tell them that my husband and daughter died, using words like passed away seemed to take the edge off it.

But it's wrong.  Well for me it's wrong.  Andy and Daisy died, they did not pass away, I choose to use the language of death and dying and so I'm not being honest with myself when I don't use that language in describing what has happened to me .

It's a symptom of our attitude to death and dying, to the taboo that surrounds it, by refusing to name what has happened, by speaking in code are we almost in denial?

I try and lead by example, I speak very openly about my story, I share many (but not all) of the details because I want to re frame the narrative around death and dying.  As I always say, it is the only guarantee we have in life.  I want people to know that it's alright to talk to me about Andy and Daisy and to do that I need to be open and give them the language to use.

Andy and Daisy did not lose their fight, they did not put up a battle...this implies they failed in some way.  They succeeded in my eyes by really living, that's what I want people to focus on.  Yes it's absolutely rubbish that they died young but they did not fail some sort of test and lose, they just died. And sad as it is, sometimes people die when we don't expect them to, sometimes they die before they have had time to do all the things they wanted in life, and that sadly is the reality.  We really need to stop hiding behind euphemism to soften the blow and maybe just face it head on.  Because in accepting that sometimes people die young we can focus on making sure we get on with life and wring every precious drop we can out of it.

You may use the term passed away, but if you do, own it, don't say it to make the other person feel better, that's the difference.  And please don't refer to people losing a battle, especially when they have cancer or an incurable disease, this is not a competition, it's just a sad truth that sometimes people get better and sometimes they don't .

Life sucks like that, it can throw you off course in the most unimaginable way so all the more reason to grab it and make the most of that finite time we have on this tiny speck of a planet in the infinite universe.

(Quick plug for my book Goodbye Daisy, a unique resource to support children, their parents and professionals through their grief when a friend or loved one dies, I even refer to Daisy dying in the children's story section of the book, children with learning disabilities need clear language otherwise it can open up doubt and confusion)