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. 

Just Because

This week I've started many posts and not finished them as the words just ran out. There is lots I want to say but much of it is going round and round in my head, unresolved. Lots to think about, lots of distinguish. Lots of conflict about if I am just getting wound up or have a point. For now, here are my favourite little feet belonging to an owner who keeps me going.

Mixed Start to the Week

Yesterday we had a respiratory follow up at the hospital Outpatients clinic. Although we have been busy with home visits for physio and a short speech and language therapy group, it has been a while mercifully since we were last at hospital. Typically, it had to be the sunniest and nicest day it has been in a long while (...2012?) so we set off early, driven by Wriggles shouting "[S]WIIIIIIIIIIIIIII[NGS]" like a mad child and shrieking if I deviated to do anything ridiculous like locate shoes, brush my teeth or get dressed along the way. To her approval we got on the bus and arrived at Leazes Park which is helpfully opposite the hospital and houses two playgrounds and a rather large lake containing ducks, geese and some enormous swans. I've waxed lyrical before about our playground love, but we really can't get enough of them. Due to her lack of independent mobility, few other places or experiences give her an opportunity to let off steam and energy at her pace. Or indulge her scarily daredevil side.

 

 The appointment was a bit of a let down. I was hoping we'd see either our named consultant who took us under his wing last summer and made the order to place the feeding tube, or either the other senior consultant or SHO who both know Wriggles very well and whose judgement I trust, which is more than I can say for some of the paeds we have come across. Instead we got a new registrar, who was very nice but also very new and said "Ummmmmmmmmmmm..." a lot. In the end, she waited until one of the senior consultants was free to run things past him, which although was reassuring and improvement from some previous appointments, I'd have preferred to wait and have the actual appointment with him to talk things through myself. 

The upshot was that until we have the consultation with ENT about removal of tonsils and adenoids, respiratory can't really move on with much as things are currently stable but could be improved. Since the tube was placed, the admissions and chest infections have decreased massively. We have had one queried aspiration admission, one viral admission and otherwise have broken the cycle of hell and managed bugs at home...albeit only just sometimes. Now that side of things seems better controlled, it has become increasingly obvious that reflux flare-ups are very much interconnected to chest health. It is quite common to become quite reliant on salbutomal inhalers during a bad reflux patch and Wriggles quite often acquires a blue tinge around the mouth when refluxing. So her reflux meds have been upped and the ENT department are being chased. Wriggles mouth-breathes a lot and constantly snuffles, which could be a symptom of her over-large tonsils and adenoids at least partially blocking her airways. This could potentially be putting extra pressure on her diaphragm, aggravating the reflux. So hopefully, taking them out will make an improvement. Please. If not, a fundoplication was mentioned again-although we have some bridges to cross before that luckily. 

Annoyingly, yet another video fluoroscopy referral has got lost in the system, and until that which will assess how "safe" her swallow is now, we still are a no-fluids-orally zone. By the time we get the VF done, it will have been over a year since Wriggles drank anything and I very much hope our feeding/speech and language therapist comes out the woodwork to help with that as I suspect it will not be easy. She never could drink from anything but a particular teat on a bottle and never thin liquids as she choked, so I do really hope we won't be left alone to learn it all from scratch, especially as a will-be-3 year old is a different kettle of fish to an under 1. After clinic running over an hour late, we then had a nice long wait to pick up new dosage meds from the hospital pharmacy. What a treat.

Frustrated by waiting around, being made to sit in her buggy ("WALK!"...which I wouldn't mind, but she tires after a very minute distance thanks to the cerebral palsy and more common Toddler Syndrome, thus making 100 metres a game of musical buggies) for part of the ride home and life in general, Wriggles resumed her tirade of shouting incomprehensible gibberish non-stop, so once home in desperation I let her torture wash Long-Legged-Mouse who has become the victim for most mischief since Noodle the beloved hedgehog got felt tipped and had to spend the night in the airing cupboard which vexed both Wriggles and no doubt him. In the last week, Long-Legged-Mouse has been attacked with Grandma's blusher, repeatedly drowned and nearly been fed to some giant fish.

I don't know what or whom was wetter; Wriggles, Long-Legged-Mouse, me or the kitchen floor, due to a faulty plug in our water table. All were thoroughly soaked, but it used up a fractious hour and finally removed the traces of makeup from poor Long-Legged-Mouse. I hung her out to dry by her tail (it's a tough life) and filled up a large plastic box with water and bubble bath, stripped off the sopping toddler and let her have an impromptu al fresco "bath" just outside the kitchen door on what I fondly call our balcony. Sceptics might call it the top step of the industrial stairs down to our concrete yard. 

To round it off, we kindly treated both our street and the back street of the next one down to my tuneless 'Five Little Ducks' accompanied by my backing-shrieker before Wriggles paraded her bare bottom for all to see. I wish the NHS would provide at least a complementary bubble bath or such for Mouse Washing or such activities needed post-appointments. I can quite empathise with Wriggles that she does get very anxious during them, particularly when they insist on weighing her and checking oxygen levels and thus is a nightmare as she can't quite calm herself properly after them, but it doesn't make looking after her any easier when she just shouts gibber until bedtime as a result. Maybe next time I'll put it in the comments box.

Mental note: request next hospital appointment to fall on a truly rubbish WET day.

Summer Loving

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Back at last!

Little blog, it has been so long! 

After a long drawn out farce (TWO MONTHS, TalkTalk, TWO MONTHS) with installing a new telephone line in our new house, at long last I am finally connected to the Big Wide World again beyond a decrepit and irrational mobile. Wriggles reached the point where taking a laptop to a café or such with wifi to connect with all things online became not an option. I did try once; I went armed with a Mr Tumble comic, two toy hedgehogs, Quavers AND chocolate buttons, the favourite book of the week and spent a terse ten minutes fishing stuffed animals out my coffee, removing CBeebies stickers off my laptop keys and trying to shield technology from a tsunami of drinks, snacks and the sticky hands of a bored toddler who had climbed onto the arm of a sofa and was balancing precariously. Needless to say I got nothing done.

So we have moved in to our new place and have been quite happy pottering and settling in. Although not hugely busy, we have been up to quite a lot and trying to make the most of the brief snatches of sun as well as  drenching mummy  finding out about puddles during the rest of the time. Wriggles seems to have grown up again behind my back. She looks older, less like a typical toddler and more like a pint sized child with a wilful glare. Although she coped well with the move, it does seem to have accelerated her toddlerisms. It turns out I was kidding myself if I thought she had learnt about tantrums before or being a pest. Noise is her forte and she is not afraid to use it, especially if I dare take her shopping in the buggy (otherwise known as a fate worse than death). For someone who cannot yet walk independently she is adamantly averse to spending anything longer than two minutes in said buggy, which is a shame as she has finally put on some weight and at the heady heights of 12.3kg is a bloody great lump.

I will elaborate more but here are some of the things that have happened since the end of March in no particular order:

• physio confirmed that Wriggles will need to start wearing splints (AFOs) for a few hours a day to ensure her dynamic tone doesn't start hampering her range of movement, balance or teach her an incorrect gait pattern (wonky walking to you and me. It has already been noted that she walks a little like John Cleese in Monty Python's Ministry of Silly Walks. Funny now, far less so in the playground). The Piedro boots aren't quite hitting the spot on their own. We're just waiting for the appointment to be measured and fitted for splints. "She can choose her own pattern!" they said cheerfully. I am not sure that will be consolation enough but needs must. No one said things were easy all the time.
• Wriggles has become obsessed with Bagpuss. I admit to gleefully encouraging this as it does beat Baby Jake and other Cbeebies rubbish at times. Her favourite episode is without a doubt the Mouse Mill with the chocolate biscuits, and she asks/demands for "mouse!!!!" or "choc[olate] bi[scuit]" if she claps eyes on my laptop.
• her speech is either finally making some strides or I deserve a degree in translation. We still rely heavily on a mixture of Makaton/BSL signing to decipher sounds, as she can only pronounce either the first syllable or letter but her signing is getting quite clear and she has at least 70 'words' she can use singularly. They aren't all consistent and not all clear, particularly without signing or a context but it has to start somewhere.
• talking of speech, I had to waste several hours of my life throughout April attending a speech and language 'help' group. I am sure those devising it meant well and I truly hope it helped some of the parents attending but I can honestly say I have never felt so patronised, belittled or talked down to by NHS services and I have seen some pretty annoying consultants in my time and had to have a rather humiliating argument in the middle of a ward round in NICU when a consultant questioned my cycle dates and conception date for Wriggles, insinuating I was either fibbing, mad or forgot occasions I may have had sex, in front of a large audience and at a time when I was incredibly fragile, as was she.
• I have had some lovely evenings painting, re-painting and 'upholstering' some rather knackered furniture I own. Thank you Dulux and your 3 tester pots for £1 offer.
• Wriggles has had her first hair cut. I did it in the bath and hated it straight away, although am used to it now. I think it was the shock of seeing her less like a baby and looking more grown up.
• we met a real life baby when my closest friends from university came up for a glorious and memorable weekend, one bringing her 10 month old son. Wriggles was warily fascinated and carried around a photograph of the pair of them after he left and has become very interested with the idea of babies (although does refer anyone under about 5 as a baby). I in turn have also become interested with babies and ever so slightly broody, though this is now wearing off as I contemplate the idea of having two noisebags in the house, not to mention not possessing a man.
• I have ever so slightly started dreaming of trying to re-start non-child related hobbies. Recently we went to a picnic style gig outdoors and I briefly had a turning lindyhopping with a good friend and only fell over once. I danced (badly) all the way through university and it suddenly broke through to me that though I love being Mama I also am beginning to miss being Amy.
• we are officially doing the Blended Diet having confessed to the dieticians who are better than I thought about it. They were very damning on the telephone then turned up with a stack of recipes proclaiming "Shhh! You didn't hear it from us!. Our community nurse advised us to be a bit creative about how long we have in actual fact been experimenting and to let them think it is all their idea. So far, so good. We have also FINALLY added chocolate buttons and Pringles (red flavour only) to Wriggles' oral diet.
• I have my own bedroom back. It feels a little disloyal, but it is minor bliss.
• Wriggles fake-cries to try and get her own way or if I tell her off for being a pest. It can be like living in a very poorly directed pantomime at times. With less sequins.
• I decided to be frivolous and buy Wriggles a pair of spotty Doodles shoes for summer. She calls them her Mr Tumble shoes and definitely prefers them over her Piedro boots. So do I (orthotic benefits notwithstanding). After getting fed up with constantly seeing other toddlers progress so quickly and battling with a newer physio regime of more exercises, a walking frame and seeing on some paperwork Wriggles officially described as 'disabled' I needed something obvious and rooted in so-called normality and it turned out £15 canvas shoes that will probably not last long was it. It felt good. I am acutely aware things could be far more complex but they also at times, wear me down.
• we have found a new music group nearby which Wriggles really likes. This makes me feel less guilty about avoiding toddler groups and dragging my heels about looking at preschools. She has picked up the group routine, language and actions remarkably fast and I am now hoarse at the end of bath times after singing all the songs we have learnt.

Some things what we have been up to...

B

Rather excitingly, this morning I bumped into my ex-psychologist, B, whilst on the High Street of where I live.

I don't mean that in a sarcastic self-deprecating "look how un-exciting my life is" kind of way. I was genuinely excited and made up to see her again. We haven't met in a professional capacity for just under a year and the last time I saw her was the eve of Wriggles' birthday when she called round. I knew she lived in our area and I always keep an eye out for her and she told me today as we chatted she often does the same for us.

Not everyone has had the fortune to have such a good counsellor, but B is without a doubt one of the best things that happened to me along the the special care and beyond route. We first met when Wriggles was about 35 weeks gestation and fighting a loosing battle to kick her growing oxygen habit before discharge. I had become a slight emotional robot between bouts of hysteria and at long last a matron decided that maybe it would be a good idea if I could talk to someone. So B was called down to the unit. Looking back I am so grateful it was her as immediately I felt I could trust her. 

And trust I did. She has seen me at my lowest ebbs and I have told her things I would never dream of uttering to another human being (or even inanimate object for that matter). I think when you are being that open with someone your relationship can go one of two ways; either you can become quite deeply involved or between sessions you can be very measurably detached as a way of self-preservation. Neither is right or wrong, in my opinion it very much depends on the people involved and the circumstances. Personally, for me it was the former. Over the last two and half years, B has exchanged Christmas cards with us and bought Wriggles birthday and Christmas presents, offered to do my ironing, turned up at my flat at night to check I was ok and harangued my GP for not being more supportive as well as taking it upon herself to arrange me appointments when I felt too unwell and worthless to do so. I don't make a habit of nit-picking through job descriptions, but I'm pretty sure that none of the above are present in the remit of a clinical psychologist.

Although of course not the only factor, I feel I owe a lot of my mental health recovery to B who has been a pillar of unwavering support. I'm fully aware that that is her job; to try and make people better by getting them to understand themselves and life a bit more rationally and realistically. But I've always felt she went the extra mile. I have heard so many sadder stories where people very much in want and need of help like me, had the rug pulled from under their feet, were cut off, dropped and told there was no room at the inn, so to speak. So I am beyond grateful to have been able to experience some of the best support that both the NHS and human compassion can offer. When you are drowning in anxiety, depression, fear and living one foot in the past you need someone to keep rooting for you. Someone with complete belief in your abilities and as a person. Someone who will go over the most basic ground and facts and keep encouraging you to put one foot in front of the other. Someone to take your hand and say it is alright. Someone to read between the lines and decipher the detachment. Someone to provoke tears when needed and help stop them. For some people, excellent friends and family are enough, and largely I don't fault mine. But sometimes you also need a bit of professional help, a push from someone who knows the right things to say. Who doesn't think you're mad, dramatic, silly or ungrateful. Someone who knows you are just a bit lost but can help direct you back to your path. 

Next week, we will be moving from our district to another across the city. I had been hoping we would see B before leaving. I know if she really wanted to get in touch, our new address would be on the hospital system and I still have her telephone number, but I still wanted to see her in person. If nothing else, so she could see that the emotional wreck she counselled and help put back together, has blossomed. And Wriggles; whom she has seen both grow up and also sat with me in Wriggles' most critical times and kept us company during lunch breaks during admissions. She has been part of our story and it felt quite fitting to exchange news and personally give her our details before we start a new chapter. Aside from the madness of packing and moving, I feel like I am now ready to say goodbye and move. I have now seen everyone I wanted to in our area and know they will all still be there with several miles between us.

The Walker

This, really splits me.

There is one bit of me which is really excited and so very proud of my little girl for how quickly she took to her new Kaye walker. I am buzzing about the promise of Independence it will give her and how grown up it suddenly feels. Neither the physio or I could not believe how pretty much within minutes she had the walker figured out. After the physio left and Wriggles had an early bath, the first thing she wanted when out and dry was "wheeees" ("wheels" to you and me, not to be confused with urinary activity!) before I had even put her pyjamas on.

And then the other, lesser, but there nonetheless, bit of me can't quite believe that my daughter needs a walker. It is a very obvious looking accessory that both opens up questions, stares, curiosity and I fear ignorance, and is a bit like a flashing sign saying LOOK, SHE HAS A DISABILITY!

Until now, she has gotten about by crawling, holding my hands or pushing a wooden truck at home which was custom made by a very clever dear friend of mine with a penchant for woodwork. This walker though, this is grown up looking. It is also, very medical looking. You could not mistake it for a toy, put it that way. I have known, in the privacy of my home and what I have chosen to share with people, how things lie for us. This is now like an open declaration and one I must call the shots on, as Wriggles cannot direct me. Does she need it? Yes. I believe it will be integral for her social development, confidence and independent skills. I wish I could keep her little and wrapped in cotton well forever, but I can't. It isn't good for her. She needs this.

I think I fear the ignorance and the stares the most. I know I am guilty of looking twice at any child, particularly small children using such devices. Of wondering why, what needs they have that merit it. I know from my own former naivety, that it is all too easy to elicit a sense of pity by jumping to conclusions. Now, as a mother of a child with extra challenges, I know those challenges are a very small part of that child. But strangers don't. And I shouldn't care, but I do. This world is not perfect and I feel that very keenly. I want everyone to see my child is perfect in every way but I worry they will only see the physical imperfection. Of course those close to us and those that matter will accept it because they think my daughter is the bees knees, and for that I am grateful to be blessed with good friends and family. I just wish everyone else was the same!