Sorry, Wriggles

Some days I long to see you run off as if in flight, with the crowds of other children.

Some days I long to see you slurp up a drink noisily and blow bubbles through straws.

Some days I long to just go out for lunch with you and order something off the menu for you to eat: with pleasure. No syringes.

Some days I long to hear your voice join the little words you are learning.

Most days I feel at peace with how things are and focused on your abilities.

All days I feel so heartbreakingly proud of you (except maybe, when you are badgering me for Maisy Mouse DVD again).

And some days I feel bone-crushing guilt and sadness that I couldn't "fix" things for you.

That I can't wave a magic wand.

I feel angry we have to rely on so many people and are only adding to that team, to help you achieve what comes so naturally to other people.

When you cry during physio stretches, I am crying with you. I've just learnt to have invisible tears.

If I had a magic answer, I promise you I would have used it.

You are so good; so happy really. So full of beans, so scornful of fear.

So why do I feel so sad and guilty that I have somewhere failed you? 

How is it possible to feel so grateful, thankful and elated and simultaneously so muddled, confused and aching for this life you never envisaged to go back to being hidden?

To Wriggles' Father

Unless you live in a cave, you must know today is the day before Father's Day.

Or maybe I just notice it more as a single parent, painfully aware we are missing one half of the parenting team my daughter should have.

Normally I barely register it, so used to it just being Wriggles and I. I am pretty OK with how things are; I've never known anything other than single parenting and it works for us, maybe selfishly but works for me. That is not to say the door is closed, that I have tried to shut you out, shut you up, blot you out. You know where we live, you just don't come knocking. And right now as gifts shops around the UK and the parenting world knows it is the cusp of Father's Day. Call it a commercial ploy, write it off; it doesn't stop it hurting when it rolls around though. Because up and down the country, families, little children, big children, partners of brand new children will be celebrating the man in their lives. And we are missing one; to be honest more than missing you we are missing what we could have had. And a part of me thinks that even if you turn out to be a reformed character in years to come, Father's Day will always be a reminder for me at least of your initial lack of enthusiasm. I hope you step up, truly I do. It makes me feel sick to think my Wriggles might grow up feel ignored, unwanted, not half as special as she is. So I hope you come back for her. I wish you would. Today the world seemed alive with dads. Doting, playful, exasperated, grumbling, adoring dads. Dads there in the thick of them. Some had partners, some were alone. But they were there.

I've just put her to bed. We had a rough bath time after she refluxed and was sick everywhere, crying her eyes out. Exhausted, she fell asleep on my lap as I mindlessly watched The Voice, more listening to her breathing rise and fall than a bunch of hopefuls. Over a hour later as she snored softly and my leg went numb, I softly put her down in her cot. Nearly 3 and she still sleeps deeply like a new baby, fists clenched and face screwed up. All those nights you never saw, the baby years you will never go back. That intimacy of a sleeping child. How did you not want it? Not crave it? My favourite mornings was waking nose-to-nose with a gurgling child, sweaty curls matted on her head. I know you can't always miss what you don't know, but I can't imagine how I wouldn't need that knowing I had a child. My shoulder is now wet with her dribble. I wonder if you'd think that was a bit gross. To me it's a badge of honour.

There is so much I want to ask you but far more so much I am afraid to. In all honesty, I don't think I want to know why you have chosen to withdraw. I am certain it wouldn't make me like you any more. Is it because you're not here, you can't see her and fully experience that love? Is it because you don't understand her disabilities? Is it because you simply never wanted children? Is it because of me, because you didn't love me and therefore don't love your child like you could? All fill me with fear mixed with the unknown it might be none of them. I cannot understand being the one that lives with her, knows her so closely. I can't do anything without thinking of her.

I'm not sure what you'll be doing tomorrow. I wonder if you'll miss her; think of her first thing and last thing. As you see your own father will you wonder what happened to your own fathering? Wriggles is too little I think to understand it all yet. She certainly is not wanting for loving men in her life, thank goodness. That is your loss at this moment in time. The potential for loving divided out between others. Humans are forgiving beings though and love is more complex than we'll ever understand. I know in time if you wanted you could have splodgy hand-printed cards, bent and dog-eared crafty items, hot breathed hugs. But you have to ask; a chosen and deliberate absence deserves nothing.

I will make sure she has a good day tomorrow as always. It will be a strange one. I might have to provide all family roles but it will never be my day. I am not a father. So until you reappear in our lives, her life, it is a day to effectively forget. Just another Sunday. 

Sometimes

Always, always, always I am proud of Wriggles.

Proud of what she has achieved.

Proud of what she will achieve.

Proud of how far she has come.

Proud of what a delight she is (tantrums excluded) and how she charms the pants off anyone and puts a smile on the face of strangers.

But sometimes, although I am proud I am also sad.

Not disappointed, but sad. There is a huge difference between the two.

Sometimes I look at other children, and whilst I do not compare, I do notice. Notice that those younger are taking steps, forming forms, wobbling around whilst my older girl crawls around blissfully. And sometimes I feel angry or upset or frustrated that anyone should have a complicated journey, that any innocent child should have to be on a different path, that any family should have a challenging journey.

It's character building, they said. Challenges make us stronger and us who we are. 

Sometimes I believe it and sometimes I think it is bollocks.

Sometimes I want to know what the future holds and sometimes I am scared. Sometimes I am furious at the universe for giving my beautiful girl such a mixed bag when other (less nice, obviously) children get such an easy ride. To them, the terms I know and hear and think about every day are either those of ignorance or simply intellectual. To me, they are part of my child.

Sometimes I wonder if I had done anything any differently if we would have had the complications we did and still live with.

Sometimes I wish I could just take Wriggles had and run off into the sunset, away from doctors, from clinic, from observations, from reports, and just be the two of us alone.

Dear NICU

Dear NICU,

I am angry. So angry. I know I shouldn't be but there are so many things I want to say to you. Maybe it's not healthy nearly 2 years on but I need to get this off my chest.

You denied me my role of motherhood. You took away my basic rights as a parent. You can SAY I'm still the mum, but how was I really being a mum just sitting? Sitting and staring. Watching and waiting. That's not parenting.

Do you know how demeaning it is to ask for permission to touch my baby? Not even hold, but touch? And when told, albeit gently, no not now, no not today, how you snapped my fragile heart and stamped over it before brushing it aside for dead.

How patronising and sad it is to have cuddles put on a rota, as if it was another chore to tick off. 15 minutes a day; 3pm after cares.

How I felt as small as a gnat, no smaller, as worthless as a flea because I wasn't breastfeeding. I couldn't even do that and you didn't care. You didn't even say, don't worry because it wasn't important as long as my child grew.

You smashed every one of my dreams and preconceptions of my first child, my baby I will never ever recover or now live. My innocence was lost within hours. It doesn't matter if I go on to have another baby; I will never get those hours back with her.

You were rubbish at sharing. All those weeks and I could only visit. Every night I had to leave. Every night I had to leave my baby with someone else. Someone very kind and very skilled but a stranger. Every night I had to accept that someone else would comfort my baby because I couldn't be there to do it, and might get to hold her precious hands while I wasn't allowed.

You had the most important job in the world looking after tiny vulnerable beings that were each the centre of someone's universe and yet you had no compassion. Day in day out some babies would get sick. Worse, some might leave this earth. Why didn't you do something? Something more?

You weren't me. You might have cared for my baby but you will never love her and you took her from me when she needed love the most.

Kind regards,

but maybe not that kind,

Mouse

ps. By the way, thanks for y'know, saving my baby's life and looking after her. Thanks for giving her the chance to live so we could both be happy today. More than happy. Um. Maybe you could just ignore all of the above?

*screws letter up and throws it in the bin*

Sigh.