Today we have to go back to our favourite place for a mini break to complete a sleep study.
Wriggles has gigantic adenoids, tonsils that want to stand up and be counted and on going reflux and on top of this is a restless and noisy sleeper. She often snores like a drunk having fallen out of the pub-so lady like. All of these things combined with a "ropey chest" (to quote one of the consultants. There's nothing like being blunt) means they are keen to rule out central or obstructive sleep apnoea.
Besides, it's been nearly just over two weeks since we were last on the respiratory wards which must mean it's time to go back again.
All that aside though, this admission I'm not too bothered about. Yes, it's a bit of a faff but this has to be our only admission with no intervention, apart from putting some wires on and off and possibly the odd beep. So I'm feeling a bit chipper. Our other planned admission involved surgery and an anaesthetic and our next planned admission (an MRI) also involves a sedative. So this one: I wouldn't go as far to say I'm laughing, but you get the picture. I'm sitting on the fence to if they find anything-I think since the tube was placed her snoring has improved massively (which would fit in with aspiration being reduced) although it certainly hasn't gone altogether. They may well find nothing of concern which would be marvellous. If they do, I'm not entirely clear of the next step but suspect it may involve removing said adenoids and tonsils, which if it came to it I'm not against. Whilst I am far from a fan of surgery, they are proving to be a blessed pest and secretly I've clung on to stories that non-eaters started eating better after the removal of them and tonsils, although our consultant has warned me this would not be a given.
I do feel a slight amount of nostalgia going back. Maybe not nostalgia (after all, we are barely out of there enough to feel such) but fondness for such a chunk of our lives has been played out in that blessed hospital. So for a non-scary visit, I'm almost looking forward to it. Change of scenery? En-suite? Travel packets of instant coffee? Check! And besides, I can't possibly do the washing up or sorting out piles of rubbish in my flat if I'm not there!
If I stop and think about it, it makes me sad. Sad that we are that used to hospital that it feels like a break or a holiday to go in for ultimately some important diagnostic tests. So I'm not going to. For now, I'm going to pack our best pyjamas and some travel sized toiletries and pretend it's all fine. I bet it will last until we have to leave the flat.
Then you'll have to drag me there.
Sunday, October 28
Saturday, October 27
Friday, October 26
Tiny no more
Recently I have been trying to do some sorting out. As happens when you have a small child, odd tiny socks and vests you never bought breed and end up EVERYWHERE. Today I found a wee bootie wedged behind the clothes horse and was momentarily caught stock still at it's size. It was so small. Yet it was easily that for a 3 month old child; needless to say it fitted mine up until around her first birthday. When I find these small items of clothing aimed at the first few months of life, I then have to further pinch myself to remember my baby was even smaller. Seriously small. At 1090g (just under 2lb 6oz), little bigger than my hands. Her eyes barely open, unable to breathe for herself and so frail. Her first picture a few hours after birth is a little shocking. I treasure it, but it is not a cute baby picture by any means. I love it because she is my baby but I can't quite imagine it on a board with other baby pictures of squashy newborns or even pictures later down the line of NICU.
When I find tiny things, I always have a pull to go back to our NICU memory box and find her first nappy, first dummy....so small, even for doll's clothing. I find it staggering to look at them and think that baby, my baby survived and thrived. That babies, some half her weight can too. I can't explain the pull to keep looking at these things, keep reminding myself. In many ways it is like poking at an open wound. God, it hurts when I think of the pain and suffering she has been through. The mental pain and suffering I and my family have been through. The scars we are left with.
I find myself afraid of forgetting, alongside paradoxically being desperate to move on. It has defined things for so long and is really my only experience of motherhood. For so long I wished we could have been one of the average statistics, the "normal", the tears-free, the one where you knew your baby would be there the next morning. Now two years down the line, we are in a little limbo. In part, it is oceans away. In part it is still with us every day in form of some problems or delays or memories. In a strange and not-entirely welcome way it has become my normal, which is what I think I am afraid of letting go of. Instead of doing all the things I expected to do as a mother, I did lots of hospital based things and seeked out people in similar situations for vital support. Now we are in a position to mix and match effectively, I find I often flounder. It feels disloyal, like we are turning our back on all we went through that made sure I had the daughter I have here today. Which is so silly; we all know children grow up, lives move on and people grow with change. Being able to do some "normal" things is homage to the doctors and nurses who fought alongside my special girl.
Thursday, October 25
How to be a nasty mummy
1. Bribe your child out the house with the lure of going to the swings when actually you need to get the flu jab for the both of you.
2. Ensure a heavy surprise rain shower happens, thus quelling any playground antics.
3. Realise you have left your pushchair raincover and umbrella roughly by your front door, now at least 20 minutes walk away.
4. Given that it is that seasonal time of year for flu jabs, try and arrange said jab in the same week as your child's blood test which has left a nasty bruise to maximise any misery.
5. Stop child from escaping out the doctor's surgery every 30 seconds.
6. Get blasted jabs. Administer Calpol immediately but don't let your 2 year old draw up the syringe for being-in-public-and-wanting-clean-trouser-related reasons. Cue tantrum.
7. Let small child menace toys in doctors for a few minutes to calm down. Ensure child has an argument with a plastic chair. Step in to admonish chair and pacify small child. Cue tantrum #2.
8. Go for lunch. Cue tantrum #3.
9. Try and pick a cafe with a liberal escape-promoting highchair. Don't let your child repeatedly try to escape out of it.
10. Refuse to let toddler touch a piping hot steam-emitting sandwich RIGHT NOW for safety reasons. Cue tantrum #4. Try to explain loudly exactly why for the benefit of people sat around you, all exchanging looks about that poor un-fed baby.
11. Blow on sandwich and when appropriate give small piece. Try to keep eye rolling to a minimum as pieces of your lunch go flying.
12. Attempt to encourage eating and actively attempt to feed small child. Cue tantrum #5. Give up.
13. Borrow book from the basket of child-friendly distraction devices. Pick the wrong book.
14. No small child, you are not going to fling this china tea cup what does not belong me to.
15. Admit defeat and rally troops for return home. When coaxing loopy toddler into coat, try and lightly nip fingers wildly waving around in the zip. If this fails first time, try again.
16. Pretend you can't see everyone else in cafe now averting theirs eyes to your screaming child.
17. GO HOME. Make sure your toddler is exhausted but refusing to sleep. If your child doesn't understand this concept, by all means Wriggles is happy to hand out tips.
18. Put the kettle on. Wrestle toddler into cot.
19. Ignore washing pile and the sea of destruction around you that happened at breakfast.
20. Realise you have forgotten anything useful from the shops such as washing up liquid and toilet paper. Look wistfully at cupboard containing emergency rum.
2. Ensure a heavy surprise rain shower happens, thus quelling any playground antics.
3. Realise you have left your pushchair raincover and umbrella roughly by your front door, now at least 20 minutes walk away.
4. Given that it is that seasonal time of year for flu jabs, try and arrange said jab in the same week as your child's blood test which has left a nasty bruise to maximise any misery.
5. Stop child from escaping out the doctor's surgery every 30 seconds.
6. Get blasted jabs. Administer Calpol immediately but don't let your 2 year old draw up the syringe for being-in-public-and-wanting-clean-trouser-related reasons. Cue tantrum.
7. Let small child menace toys in doctors for a few minutes to calm down. Ensure child has an argument with a plastic chair. Step in to admonish chair and pacify small child. Cue tantrum #2.
8. Go for lunch. Cue tantrum #3.
9. Try and pick a cafe with a liberal escape-promoting highchair. Don't let your child repeatedly try to escape out of it.
10. Refuse to let toddler touch a piping hot steam-emitting sandwich RIGHT NOW for safety reasons. Cue tantrum #4. Try to explain loudly exactly why for the benefit of people sat around you, all exchanging looks about that poor un-fed baby.
11. Blow on sandwich and when appropriate give small piece. Try to keep eye rolling to a minimum as pieces of your lunch go flying.
12. Attempt to encourage eating and actively attempt to feed small child. Cue tantrum #5. Give up.
13. Borrow book from the basket of child-friendly distraction devices. Pick the wrong book.
14. No small child, you are not going to fling this china tea cup what does not belong me to.
15. Admit defeat and rally troops for return home. When coaxing loopy toddler into coat, try and lightly nip fingers wildly waving around in the zip. If this fails first time, try again.
16. Pretend you can't see everyone else in cafe now averting theirs eyes to your screaming child.
17. GO HOME. Make sure your toddler is exhausted but refusing to sleep. If your child doesn't understand this concept, by all means Wriggles is happy to hand out tips.
18. Put the kettle on. Wrestle toddler into cot.
19. Ignore washing pile and the sea of destruction around you that happened at breakfast.
20. Realise you have forgotten anything useful from the shops such as washing up liquid and toilet paper. Look wistfully at cupboard containing emergency rum.
Sunday, October 21
G-tube 6 weeks on
This *points up* makes me very happy.
Now, just ignore a) the mess b) the fact my child is only half dressed at gone noon and c) the fact she is covered in paint (one of those days when you have to pick your battles. The bath can wash it off later).
That is a child who has suffered terrible oral aversion for eighteen months and as a result is now tube fed. Now obviously, she did not eat the whole hunk of bread. In fact, I think the area consumed amounted to about the size of my little finger nail (and I have tiny hands) but the point is she is going for it.
We have had the g-tube for about six weeks now. I can't believe it is only that long; it feels as if we have had it far longer. I think by the time we had it, Wriggles so badly needed it, that it fitted in perfectly because there was no other option such was the struggle of feeding, gagging and vomiting. The first week was a shock to the system. I knew how much we needed it , knew how much better it would be than the NG we had been making for with for a few weeks, but I wasn't ready for how taken aback I was by the sight of it. Something artificial and permanent sticking out of your child's unblemished perfect skin is a shock. Even if you know how necessary it is, it still got me. Let alone her. I really struggled with how to communicate to a small child how she could be put to sleep, then back up in pain with a lump of plastic sticking out of her stomach and at that point, an ostomy bag. The bag went, feeds were cautiously resumed and we got back home. After a few days of feeling sorry for ourselves, we picked back up. That is to say, Wriggles picked up; she clearly couldn't care less and her attitude gave me a jolly good kicking. If a not-quite-two-year-old could cope with this, then her twenty-something mother was bloody well going to join in. Of course it isn't that simple-as a mother and an adult I am effectively "feeling for two" the emotions, the presumptions, the hopes and fears and everything that is attached to coming to terms with the fact that normality has flown out the window.
We have had some teething troubles with the tube; two infections needing antibiotics and dressings, and hypergranulation tissue making an unwanted appearance. Fingers crossed, it has now all settled down and things are pretty good. I have lost any notion of caring and have primed feeding sets, vented, flushed and hooked everything up on public transport, in lifts, in H&M, in the park, coffee shops, baby groups and in an art gallery. We have got some funny looks and stares out of curiousity but have not yet had to deal with any questions which is a relief.
When the tube was placed, we were still very much in a not-eating cycle. Wriggles is prone to being a little more receptive and trying some limited foods for a few weeks, then frequently going for months with complete refusal to take anything by mouth, touch food or acknowledge anyone eating. Even if she is not all-out refusing, she will take miniscule amounts of familiar food such as a handful of crisps a day. Hardly sustaining! Just over a week ago, we started a period of trying food again. I had forgotten how intense the heady bliss is when your non-eating child willingly takes something. When she reached out for something I nearly fell off my chair and had to hold back tears of relief. Since then, I have tried to capitalise on her curiosity especially in the finger food department and in the last week we had tried:
- Mummy's chocolate brownie
- cake crumbs
- bread (including toast)
- rice cakes, particularly bright yellow "cheese" flavoured ones and salt & vinegar
- pizza
- gingerbread
- hand cooked crisps (not by me, by M&S). Worcester sauce got the thumbs up, parsnip did not
- scones
For the time being, we also seem to have her reflux under control which presumably will only help her willingness to try food. She also seems more comfortable in herself and my washing machine is enjoying a longed for break from twice-daily service. I have now been doing this long enough to realise that this isn't a "fix". Refusal and the return of more aggressive reflux may be around the corner. It's sad but true, and I have to acknowledge this. This isn't a defeatist or pessimistic viewpoint although it might seem this way. After the road we have been on with feeding, reflux and tubes to date, I know we are far from the end or even the middle. And it pays to be realistic. It pays to set new goals or everyone becomes upset and frustrated. So if we get through more than one fromage frais in a week and I get my dinner played about with by someone that isn't me, then we're winning. It may not seem much, but to us it's huge. It has taken me a long time to accept this and adapt to realising my baby girl is not as straightforward as I might like but not any the worse for it!
Friday, October 19
Thursday, October 18
Progress
On Monday I had a bad day. After discharge the day before from hospital, the adrenaline that had kept me going through the previous 3 days was wearing thin and I felt anxious, on the brink of tears all the time and exhausted. Exhausted doesn't even begin to sum up how I felt-we use that word too lightly a lot of the time, but I felt so leaden and frankly like I just wanted to curl up in a ball in dark and damn the two year old, the house and the entire world that needed me to do things. Of course I didn't-well, I did the damn the house and ignored defiantly the washing up, pile of dirty clothes and the spillage of coffee in the kitchen. And I didn't take the bins out. Rebel. However dead to the world I feel, I cannot damn the two year old. Because she needs me and no one else is here, and that pesky thing called love and conscience. I simply couldn't and cannot ignore her little face. As much as I would love the block out my ears and sit in the dark all day, she is the reason I keep going even if my movement is without feeling, emotion or motivation. Even knowing I want to ignore her and am too tired to care about playing tears me up with guilt, making the whole things worse. It did get to a point where I just laid on the sofa, whilst she safely played by herself for half an hour or so, tipping every box upside down and cheerily lobbing things across the room. It did her no harm to amuse herself for a fraction of the day, and meant I could scrape a fraction of enthusiasm and vigour together for bedtime. When I kissed her goodnight and told her I loved her, I meant it by then. It wasn't just going through the motions like the rest of the day had felt like.
Tuesday felt a bit better, and Wednesday better still. By today I felt back to "normal", whatever that is. I was scared at the beginning of the week that I was back slipping on the road to a terrifying pit of depression and anxiety and it is only now that I am able to acknowledge just how far in the last two years I have come. Only a little over six months ago, after I very nearly lost the plot entirely and had a brief hiatus from work to recover from a very unsettled and horrible period. In the end, I was made redundant as the company needed a full-time more reliable person which was a blessing in disguise. If I was still working, I dread to think what state I would be in now. Although days are times are hard still too, being at home means I can at least try and give me all to my daughter, not feel like I am drowning or slowly peeling away from the world and all I hold dear. I have written about suffering with PTSD and the secondary depression and anxiety that tagged along with it. This blog turned into a balm in helping me to sort of my jumbled up mind and find some sort of order, rhyme or reason and also importantly to realise I wasn't alone, a freak or a terrible mother. Just a mixed up one that needed to get a little better. And I have. So much better than I thought. I used to have Mondays all the time. I would go through months of Mondays, and even when they weren't entirely bleak my best was never good enough. I used to have panic attacks in groups, cry at the postman, avoid people deliberately and spent the evenings crying or sitting there, numb and void. I still have times when the anxiety creeps up with an unwanted "BOO!" and have to really work to just brush my hair and put on some tights. My care for my little girl might not waver, but it takes only a little trip up for me to let caring for me slide.
I haven't had counselling since April or taken anti-depressants since June. Initially I thought that not having active treatment meant things were fixed but am slowly trying to accept that because my mental health was triggered by very real events that I am still often reminded of, that it will take a while for the anxiety to ebb away and re-train my mind of happier times and less high-alert reactions. The difference is that I now have some basic tools and a better sense of "normal" to help me through rough days, where as before I felt like I was swimming in a huge sea, alone, against the tide. Now I am paddling-I just get out my depth sometimes. But I've got some metaphorical arm bands.
Depression and anxiety aren't quick in and out experiences, but they are not forever. They come in waves like many illnesses. It takes experience, support, belief and a whole lot of laughs and smiles to ride out the tough times. But it does get better. If eighteen months ago you'd have told me I could sleep and even remember to feed myself 3 meals a day and truly immerse myself in the day for at least 6 days out of 7, I might have cried. Or laughed. It feels like I have grown up a lot in that time, but I think it is less growing up and more just my mind growing out. It takes some compassion and understanding to realise it is ok to not be perfect and not weak to ask for help.
Tuesday felt a bit better, and Wednesday better still. By today I felt back to "normal", whatever that is. I was scared at the beginning of the week that I was back slipping on the road to a terrifying pit of depression and anxiety and it is only now that I am able to acknowledge just how far in the last two years I have come. Only a little over six months ago, after I very nearly lost the plot entirely and had a brief hiatus from work to recover from a very unsettled and horrible period. In the end, I was made redundant as the company needed a full-time more reliable person which was a blessing in disguise. If I was still working, I dread to think what state I would be in now. Although days are times are hard still too, being at home means I can at least try and give me all to my daughter, not feel like I am drowning or slowly peeling away from the world and all I hold dear. I have written about suffering with PTSD and the secondary depression and anxiety that tagged along with it. This blog turned into a balm in helping me to sort of my jumbled up mind and find some sort of order, rhyme or reason and also importantly to realise I wasn't alone, a freak or a terrible mother. Just a mixed up one that needed to get a little better. And I have. So much better than I thought. I used to have Mondays all the time. I would go through months of Mondays, and even when they weren't entirely bleak my best was never good enough. I used to have panic attacks in groups, cry at the postman, avoid people deliberately and spent the evenings crying or sitting there, numb and void. I still have times when the anxiety creeps up with an unwanted "BOO!" and have to really work to just brush my hair and put on some tights. My care for my little girl might not waver, but it takes only a little trip up for me to let caring for me slide.
I haven't had counselling since April or taken anti-depressants since June. Initially I thought that not having active treatment meant things were fixed but am slowly trying to accept that because my mental health was triggered by very real events that I am still often reminded of, that it will take a while for the anxiety to ebb away and re-train my mind of happier times and less high-alert reactions. The difference is that I now have some basic tools and a better sense of "normal" to help me through rough days, where as before I felt like I was swimming in a huge sea, alone, against the tide. Now I am paddling-I just get out my depth sometimes. But I've got some metaphorical arm bands.
Depression and anxiety aren't quick in and out experiences, but they are not forever. They come in waves like many illnesses. It takes experience, support, belief and a whole lot of laughs and smiles to ride out the tough times. But it does get better. If eighteen months ago you'd have told me I could sleep and even remember to feed myself 3 meals a day and truly immerse myself in the day for at least 6 days out of 7, I might have cried. Or laughed. It feels like I have grown up a lot in that time, but I think it is less growing up and more just my mind growing out. It takes some compassion and understanding to realise it is ok to not be perfect and not weak to ask for help.
Monday, October 15
Not Fair
We all get angry. Anger is part of what makes us human, albeit it a less pleasant trait. We all have tempers which we all loose. Saints excepted.
At the moment I feel very very angry and frustratingly have nothing to blame or take out my anger on. I'm not even convinced that it is even anger through and through, just that I am feeling close to The Brink again and anger is the nearest emotion to express myself right now. We have just been through another hospital-based saga and I am feeling very tired and very lost.
Obviously I don't want to take it out on my little girl. Neither do I particularly want to take it out on myself.
So what?
Cry hot tears in the shower?
Throw things?
Sulk?
Swear?
Ignore the washing up and eat cold beans out of a tin?
Stamp my feet?
There isn't something I feel angry at. Just life. Just another 3 days watching my daughter helplessly in hospital when yet again a cold sent her in for emergency treatment. It was the 12th or 13th admission, not counting the countless other times we have loitered about for a few hours having a whiff of oxygen here, an antibiotics prescription there... I am so fed up of how things pan out. So fed up that a cold at 2 years old still equals a few days watching my child struggle. Watching doctors worryingly count her breathing from the other side of the room, lest they upset her and exacerbate the problem. Watching people tick off ideas that may or may not work. Watching her little face in pain, fear and confusion. What is happening now? Why can't I protect you, little girl? I wish I could.
I am fed up of not knowing, not being able to do anything and sick of extortionately priced hospital shops. I am fed up of drugs rounds, of over boiled vegetables and not being at home. I am fed up of being anxious. I am fed up of feeling sick with adrenaline and then not being able to come down for days or weeks afterwards before crashing and feeling so drained all I want to do is curl up in the dark. I am fed up of being catapulted into fear when the machines beep. I am fed up of not knowing what is "the best". I am fed up of seeing my daughter in pain or unwell. I am fed up of not being able to explain to her. I am fed up of being in and out of hospital when there is so much else we could be doing. I am fed up of hospital demolishing my confidence and feeling like it belittles how far we have come. I am fed up of it mucking up worked-for routines that suit our lives and having to cancel both important things and fun things.
It is not fair.
At the moment I feel very very angry and frustratingly have nothing to blame or take out my anger on. I'm not even convinced that it is even anger through and through, just that I am feeling close to The Brink again and anger is the nearest emotion to express myself right now. We have just been through another hospital-based saga and I am feeling very tired and very lost.
Obviously I don't want to take it out on my little girl. Neither do I particularly want to take it out on myself.
So what?
Cry hot tears in the shower?
Throw things?
Sulk?
Swear?
Ignore the washing up and eat cold beans out of a tin?
Stamp my feet?
There isn't something I feel angry at. Just life. Just another 3 days watching my daughter helplessly in hospital when yet again a cold sent her in for emergency treatment. It was the 12th or 13th admission, not counting the countless other times we have loitered about for a few hours having a whiff of oxygen here, an antibiotics prescription there... I am so fed up of how things pan out. So fed up that a cold at 2 years old still equals a few days watching my child struggle. Watching doctors worryingly count her breathing from the other side of the room, lest they upset her and exacerbate the problem. Watching people tick off ideas that may or may not work. Watching her little face in pain, fear and confusion. What is happening now? Why can't I protect you, little girl? I wish I could.
I am fed up of not knowing, not being able to do anything and sick of extortionately priced hospital shops. I am fed up of drugs rounds, of over boiled vegetables and not being at home. I am fed up of being anxious. I am fed up of feeling sick with adrenaline and then not being able to come down for days or weeks afterwards before crashing and feeling so drained all I want to do is curl up in the dark. I am fed up of being catapulted into fear when the machines beep. I am fed up of not knowing what is "the best". I am fed up of seeing my daughter in pain or unwell. I am fed up of not being able to explain to her. I am fed up of being in and out of hospital when there is so much else we could be doing. I am fed up of hospital demolishing my confidence and feeling like it belittles how far we have come. I am fed up of it mucking up worked-for routines that suit our lives and having to cancel both important things and fun things.
It is not fair.
Sunday, October 14
Sunday, October 7
Snapshot
One of the precious things that our neonatal unit gave us was a disposible camera that lived by the incubator. Even in the era of whizzy phones and digital cameras, these were perfect for when you had forgotten or ran out of memory. Even better than that, they were indispensible for nurses taking pictures for you at moments when you couldn't be there or for them sneaking pictures when you weren't quite aware or when you were there on your own and wanted to commemorate a snapshot in time.
I always think of 7th October being the date when everything fell into place and I knew that come what may, I could never ever say goodbye to Wriggles and that however dire things panned out we would just make the most of it with each other. This picture however, must have been taken a few days prior as on the 7th October she started requiring some oxygen again so would have had cannulas taped her her cheeks. There is another picture that goes with this, and in both I look so relaxed and blissfully happy with her in my arms. I'm pretty sure this was taken when the nurse's had changed over to night shifts. Once I felt more comfortable in NICU and less able to leave willingly, I would stay as late as I could before catching a late metro back home.
Being able to look back at these is very special. The first few weeks were so fraught, both medically and emotionally and I really wasn't myself. I remember very clearly repeatedly describing myself as "drowning"; being underwater and not being able to break through to the surface where not just real life but also my real self and feelings were. For what felt an age, I felt nothing but pure shock and really struggled to connect emotionally to anything at all. So being able to look back and recognise that whatever I felt inside, I also obviously had clear signs of being and falling in love with my daughter despite so many concerns. It is so easy to look back and brand things with sweeping statements and how we perceive things happened: for a while I made myself quite mentally unwell by torturing myself with the thought "I will never be able to make up for her early start and for not falling in love at first sight; however much I love now will never be enough". When I read back my special care diary and pieced things chronologically back by photographs, I actually halted any possible not-keeping-Wriggles proceedings far earlier than I thought and then with help was a busy bee trying to make things happen in the best possible way for her coming back with me, which she of course did, just over two months after her birth. What I think of as being a very bleak time was in actual fact little more than two weeks. When I think of how I let those two weeks define almost a year for me, it makes me sad as it feels like I missed out, trying to be some kind of super-brave when all I had to be was myself.
When I look at it now, two years on, I can see a little bit there of who I was to become. Little glimpses of a proud mummy and a woman stronger than I might think or admit. So much of Wriggles' little life has been blighted by worry, fear and very real concerns and wrong turns, that it makes the good moments so much more precious. Somewhere inbetween all those things, we've built up a happy solid little life. It may not be all singing and all dancing, but it's ours and I love it. And I think somewhere in this photograph is a sense of belief that it will all be alright in the end.
This doesn't look to me like a mother preparing to say goodbye, this looks like someone treasuring what is to come.
Romeo's tights
On 7th October 2010, my friend persuaded me to leave the neonatal unit for one night and to accompany her to see Birmingham Royal Ballet perform Romeo and Juliet at Sunderland Empire Theatre. She told me it would be a good break for me and a fresh change of scenery and momentary release from the intensity of my sudden day to day life. Besides, she had never been to the ballet and no one else would go with her.
The ballet was good. I didn't take it in awfully, except to tell you that beforehand my friend flirted outrageously with a waiter, during the dancers danced in probably the right spots and that after my friend kindly stayed up until the early hours despite having to get up for work the next morning, listening to me repeat myself over and over, wearily going round in a cycle of doubt, fear and more fear. Maybe she was pacified by the romantic story we had just witnessed, or most likely, maybe she was just an exceptionally good friend.
After we had got back to my flat, late at night, we sat on my kitchen step with hot drinks. And then more hot drinks. We talked, a little about Romeo's tights (she was fascinated by the skin tight nature. If I was being harsh, I would say more so than the ballet itself) and a lot about Wriggles, who lay a few miles south in a plastic box sleeping soundly with now a whiff of oxygen.
I had still not formally decided that I could never let her go and severed any links with social services, but was increasingly becoming terrified at the thought of almost deliberately losing her. I had already contended with her life being snatched for medical or scientific reasons, and yet she had pulled through. I could not loose her again, could I? Even if it meant giving her less of life than I wished? Even if it meant a poorer life with just one parent? That evening, my friend listened to me yet alone wonder out loud if I could ever do "right" by her. And then I knew.
Panic like I have never known before began rising through me and I could feel myself becoming quite hysterical at the notion of saying goodbye, whether for short-term or potentially life. I had spent weeks of tears, wondering what the "right" thing to do was but suddenly I didn't care about right or wrong, or materialism, or life styles or chances or statistics. I just knew that I didn't have it in me to ever leave her again. I knew that whatever the future held, I would just deal with it.
And so, I did.
The ballet was good. I didn't take it in awfully, except to tell you that beforehand my friend flirted outrageously with a waiter, during the dancers danced in probably the right spots and that after my friend kindly stayed up until the early hours despite having to get up for work the next morning, listening to me repeat myself over and over, wearily going round in a cycle of doubt, fear and more fear. Maybe she was pacified by the romantic story we had just witnessed, or most likely, maybe she was just an exceptionally good friend.
After we had got back to my flat, late at night, we sat on my kitchen step with hot drinks. And then more hot drinks. We talked, a little about Romeo's tights (she was fascinated by the skin tight nature. If I was being harsh, I would say more so than the ballet itself) and a lot about Wriggles, who lay a few miles south in a plastic box sleeping soundly with now a whiff of oxygen.
I had still not formally decided that I could never let her go and severed any links with social services, but was increasingly becoming terrified at the thought of almost deliberately losing her. I had already contended with her life being snatched for medical or scientific reasons, and yet she had pulled through. I could not loose her again, could I? Even if it meant giving her less of life than I wished? Even if it meant a poorer life with just one parent? That evening, my friend listened to me yet alone wonder out loud if I could ever do "right" by her. And then I knew.
Panic like I have never known before began rising through me and I could feel myself becoming quite hysterical at the notion of saying goodbye, whether for short-term or potentially life. I had spent weeks of tears, wondering what the "right" thing to do was but suddenly I didn't care about right or wrong, or materialism, or life styles or chances or statistics. I just knew that I didn't have it in me to ever leave her again. I knew that whatever the future held, I would just deal with it.
And so, I did.
Saturday, October 6
Why?
One of the things I find hard when thinking of the short term future is how to deal with questions, especially relating to Wriggles, her health and her past. I am used to dealing with them on an adult-to-adult basis with varying answers and an even more varying success rate but am fairly aware that in time these questions may also come from Wriggles' peers and other children, and ultimately Wriggles herself.
I guess the plus side is that children lack the knowledge, depth of foresight and preconceptions that adults do. They accept people and answers more readily and are in the most part, less malicious or ignorant. On the down side, they are often really blunt. And when you don't have an easy peasy answer, it can sometimes take you aback.
This afternoon, a five year old niece of my a dear friend of mine, was watching Wriggles bumble about whilst holding my hands. Her aunt explained that Wriggles is now 2 and is practising walking.
"Why can't she walk yet?" the child asked incredulously. "My one year old brother can walk."
Why can't she walk indeed? There are SO many answers that as an adult I can only begin to get my head around. But for a five year old? Why can't she walk when others, younger, can?
"All babies do things at different times," her aunt explained. "And Wriggles is very clever. Do you know she can sign things?"
"My baby brother can say things," the child said scornfully.
Of course, she wasn't being really scornful. It was a thing of the moment and she is five, and as an adult I can appreciate she was being a child. Because children always have and always will do the "my X is better than your X" thing. It's touching really, a pride in their own surroundings and familiarity. But in a split second I felt sad. It felt like I was making excuses and belittling my child's progress and the enormity of her journey. It isn't always appropriate to tell it how it is, depending on the audience or situation. I am also increasingly aware that Wriggles is becoming more receptive to what is said about her and to her, both from the point of view of questions but also the answers.
Once the little girl had heard that Wriggles was born early, she was fascinated. Cobbled between myself and my friend, we tried to explain that Wriggles came too early from her mummy's tummy before she was ready and was very small and very poorly. This seemed to go down satisfyingly and after a few wide-eyed moments, the subject was dropped in favour of walking on the garden wall.
But is the subject ever dropped for a parent? Maybe for the moment, but I know this is likely to be the start of many questions. It is so hard to answer them when you yourself don't have all the answers, or satisfying ones.
I guess the plus side is that children lack the knowledge, depth of foresight and preconceptions that adults do. They accept people and answers more readily and are in the most part, less malicious or ignorant. On the down side, they are often really blunt. And when you don't have an easy peasy answer, it can sometimes take you aback.
This afternoon, a five year old niece of my a dear friend of mine, was watching Wriggles bumble about whilst holding my hands. Her aunt explained that Wriggles is now 2 and is practising walking.
"Why can't she walk yet?" the child asked incredulously. "My one year old brother can walk."
Why can't she walk indeed? There are SO many answers that as an adult I can only begin to get my head around. But for a five year old? Why can't she walk when others, younger, can?
"All babies do things at different times," her aunt explained. "And Wriggles is very clever. Do you know she can sign things?"
"My baby brother can say things," the child said scornfully.
Of course, she wasn't being really scornful. It was a thing of the moment and she is five, and as an adult I can appreciate she was being a child. Because children always have and always will do the "my X is better than your X" thing. It's touching really, a pride in their own surroundings and familiarity. But in a split second I felt sad. It felt like I was making excuses and belittling my child's progress and the enormity of her journey. It isn't always appropriate to tell it how it is, depending on the audience or situation. I am also increasingly aware that Wriggles is becoming more receptive to what is said about her and to her, both from the point of view of questions but also the answers.
Once the little girl had heard that Wriggles was born early, she was fascinated. Cobbled between myself and my friend, we tried to explain that Wriggles came too early from her mummy's tummy before she was ready and was very small and very poorly. This seemed to go down satisfyingly and after a few wide-eyed moments, the subject was dropped in favour of walking on the garden wall.
But is the subject ever dropped for a parent? Maybe for the moment, but I know this is likely to be the start of many questions. It is so hard to answer them when you yourself don't have all the answers, or satisfying ones.
Thursday, October 4
Parks, parks and more parks
King John's Palace...or what is left. Never actually stayed in by King John |
An hour passed very quickly and after a brief argument about wearing gloves (I lost, but like to think I won in some respect as I was not the one to then suffer chilly fingers) we plodded on to find somewhere to have lunch. An impromptu picnic on a bench in an idyllic spot was abandoned after an almighty tantrum that probably gave all surrounding wildlife a heart attack or at least, colossal ear ache. It wasn't a long walk further through the park and over Armstrong Bridge to Jesmond Dene where a cafe and visitor centre is situated. Wriggles is slightly better behaved in public sometimes so I voted us indoor lunch. True to form she fluttered her eyelashes at the table next door whilst declining her lunch is a slightly less vocal manner.
Heaton Park |
Finally, we got slightly lost going back through the parks. As I have lived in several districts over the years and been a public-transport-avoiding-penny-pinching-student for some of them, I have pretty good bearings on walking through places here even when I have no idea ultimately where I am. And as detours go, this was a beautiful one. We walked along the bank of one of the Ouse tributaries and found our way back. All in all, a highly satisfying day out. When I got back, I was in a good enough mood to read books for well over an hour before pleading with Wriggles to try another activity: I failed.
Ouseburn, off Benton Bank. Recommended to get lost in |
Wednesday, October 3
Distraction and Escape
Right now we have a stand off in my house. It revolves around the bookshelf and my willpower. Wriggles is a book obsessive and will spend all day calling me to attention and shoving books (normally the same ones) under my nose to be read. She gets Very Cross if this does not go her way. So far, any attempts of mine to distract her for more than two minutes have failed miserably and we are back to the bookshelf being emptied and screeching if I am not reading Each Peach, Pear, Plum right now. I have before hidden the most irritating offenders and tried to rotate things but now Wriggles can get around quickly she has morphed into Sherlock and so far foiled all my plans.
So for my sanity, I try to leave the house daily to do something Exciting and Distracting.
Thankfully, my city is full of free places.
So far this week we have done a science-type museum with a water play area, hall of mirrors and soft play type area (although it has a poster claiming it is not soft play but a place for children to "freely interact with the furniture." Could have fooled me....)
We have been to an art gallery too. Main interest: the stairs, which we climbed up and down and up and down and up and down and then got stuck. We also bumped into another exhausted exasperated mum of an energetic single minded toddler which was a welcome relief. This gallery has a dedicated under 5s area which is full of things to play with, gigantic blocks and unfortunately some books.
When nap-time failed miserably (WHY Wriggles, WHY?) we rounded the day off in the city library. Bizarrely when truly surrounded by books, Wriggles has little interest in them and instead prefers to terrorise the steps, the lift and any poor adults trying to concentrate. She also likes to climb into a cubby hole where a window is and bang her head on the glass. Approximate need of rescuing: 20 times this afternoon.
I am slightly running out of ideas for the rest of the week, but have one free musuem up my sleeve still to go! Who knows, I may even break the curse of the bookshelf or find some miraculous toddler-absorbing activity at home...
So for my sanity, I try to leave the house daily to do something Exciting and Distracting.
Thankfully, my city is full of free places.
So far this week we have done a science-type museum with a water play area, hall of mirrors and soft play type area (although it has a poster claiming it is not soft play but a place for children to "freely interact with the furniture." Could have fooled me....)
We have been to an art gallery too. Main interest: the stairs, which we climbed up and down and up and down and up and down and then got stuck. We also bumped into another exhausted exasperated mum of an energetic single minded toddler which was a welcome relief. This gallery has a dedicated under 5s area which is full of things to play with, gigantic blocks and unfortunately some books.
When nap-time failed miserably (WHY Wriggles, WHY?) we rounded the day off in the city library. Bizarrely when truly surrounded by books, Wriggles has little interest in them and instead prefers to terrorise the steps, the lift and any poor adults trying to concentrate. She also likes to climb into a cubby hole where a window is and bang her head on the glass. Approximate need of rescuing: 20 times this afternoon.
I am slightly running out of ideas for the rest of the week, but have one free musuem up my sleeve still to go! Who knows, I may even break the curse of the bookshelf or find some miraculous toddler-absorbing activity at home...
Tuesday, October 2
Two Years On
Dear Me-Two-Years-Ago,
Hello, it's me from the future. I think you need some help; you're feeling very alone. You think you're grown up at 23 with a brand new surprise baby, albeit in an incubator and trying to Do The Right Thing. You will. But right now the weight of the world is on your shoulders, or at least of your world and that of the little girl in the neonatal unit.
She's doing so well, isn't she? She's growing as she should be, she is breathing air by herself. But it's so hard to relax. So many ups and downs. Tomorrow afternoon you will try kangaroo care for the first time. I know it's scary, but it's the most special thing having the warm skin and the butterfly heartbeat placed against your bare skin. Try and enjoy the pure magic of it. Weeks down the line you will crave it, hang on to every second. I'm afraid in a few days she will start requiring oxygen again which she will not be able to manage without until she is 6 months old at home with you. Yes that's right, at home with you where she belongs. Your homes will change but one thing won't, and that is that by your side is her rightful place and it always will be.
I know you haven't come to that decision yet. Everything has been so sudden, so unexpected and so many factors are up in the air. You haven't yet sorted things with work. You haven't yet sorted things with her father. You are so far from sorting housing and finances. You have been told you have to wait until her 6 week head scan which is a few weeks off yet, to see if there has been any lasting brain damage or haemorrhages visible at this stage which may affect her development and if you feel you can manage if there is. Right now you are so badly trying to do right by her, you aren't letting yourself truly acknowledge how deep your feelings are. In the very near future you will realise that actually letting your heart rule over your head is not a black and white choice. Because sometimes your heart and head are in compliance, but it will take time for the fog of your shock to subside. Be kind to yourself, you are playing catch up in emotions what you would have otherwise had near 28 weeks to process internally. Love is the strongest of them all and will give you the power to achieve what else needs achieving. Don't be afraid to love and don't be afraid of the future. I'm not saying it will be easy, but once you have love on your side nothing is impossible. Fear isn't a failing. Listen to people, but listen to your heart. No one else can tell you the truth but yourself.
You're so worried about being able to provide for her if she is strong enough to pull through and come home. She will be; she may need some extra support which is a theme that will crop up again and again, but it is not as hard as it looks. You think that you ahve already failed her once so why wait to see if you do again: you haven't. 60,000 babies are born too small or sick each year in the UK. If you wouldn't call each of their mothers failures, why call yourself one? It was different, that was all. You're so concerned that you cannot give her what a richer or more traditional family set up could give her. If it helps, I'll show you a secret:
Does that look like a child lacking in joy? In curiosity? In happiness? In love? Children don't care about second-hand or third-hand, about whether the outing was free or cost money and any such prejudice is years off. You can cross that bridge when you come to it; I still haven't yet but I am less scared to now when it comes. But what you need is security and I'm telling you that you can and will provide that. It's so much more intricate than you think and yet so simple. This evening, that same little girl threw her arms around my neck and pulled herself into my lap presenting me with her favourite book. She snuggled into my neck at 8pm, sleepily. Every time I think that someone else may have had that privilege my heart nearly stops. Please let yourself feel, your breed of "rationality" is so far removed from your actual life that it will do you no good to torture yourself with your perceived shortcomings. You are a mother and that is enough. I could tell you all her favourite things, her quirks, her progress, about her funny faces, her noises, her likes, her dislikes, but I'll let you have that fun for yourself.
I can promise you will never ever regret it for a second. You may be tested again and again, you will know grief and sorrow and true fear but you will also know the greatest joys and the most wonderful feelings in the world.
With all my heart,
Me-Two-Years-On
xxx
A bit of background: in the days and weeks following Wriggles' surprise appearance I struggled with the idea that I could be any kind of a parent and provide for her and briefly looked to adoption or foster care, such was my conviction that I would never be able to give her the future I had once dreamt of giving my dream "first child". The further the process got, the clearer I began to actually feel things and realise exactly what I would miss out on, and how that dreams are just that: dreams. That we can create new and better dreams and try and find a route back to our old ones through a different path. And I am so glad I stopped trying to be so "rational" and realised that there is no such thing as perfection, except possibly your own child, who is thankfully only metres away from me asleep now!
Hello, it's me from the future. I think you need some help; you're feeling very alone. You think you're grown up at 23 with a brand new surprise baby, albeit in an incubator and trying to Do The Right Thing. You will. But right now the weight of the world is on your shoulders, or at least of your world and that of the little girl in the neonatal unit.
She's doing so well, isn't she? She's growing as she should be, she is breathing air by herself. But it's so hard to relax. So many ups and downs. Tomorrow afternoon you will try kangaroo care for the first time. I know it's scary, but it's the most special thing having the warm skin and the butterfly heartbeat placed against your bare skin. Try and enjoy the pure magic of it. Weeks down the line you will crave it, hang on to every second. I'm afraid in a few days she will start requiring oxygen again which she will not be able to manage without until she is 6 months old at home with you. Yes that's right, at home with you where she belongs. Your homes will change but one thing won't, and that is that by your side is her rightful place and it always will be.
I know you haven't come to that decision yet. Everything has been so sudden, so unexpected and so many factors are up in the air. You haven't yet sorted things with work. You haven't yet sorted things with her father. You are so far from sorting housing and finances. You have been told you have to wait until her 6 week head scan which is a few weeks off yet, to see if there has been any lasting brain damage or haemorrhages visible at this stage which may affect her development and if you feel you can manage if there is. Right now you are so badly trying to do right by her, you aren't letting yourself truly acknowledge how deep your feelings are. In the very near future you will realise that actually letting your heart rule over your head is not a black and white choice. Because sometimes your heart and head are in compliance, but it will take time for the fog of your shock to subside. Be kind to yourself, you are playing catch up in emotions what you would have otherwise had near 28 weeks to process internally. Love is the strongest of them all and will give you the power to achieve what else needs achieving. Don't be afraid to love and don't be afraid of the future. I'm not saying it will be easy, but once you have love on your side nothing is impossible. Fear isn't a failing. Listen to people, but listen to your heart. No one else can tell you the truth but yourself.
You're so worried about being able to provide for her if she is strong enough to pull through and come home. She will be; she may need some extra support which is a theme that will crop up again and again, but it is not as hard as it looks. You think that you ahve already failed her once so why wait to see if you do again: you haven't. 60,000 babies are born too small or sick each year in the UK. If you wouldn't call each of their mothers failures, why call yourself one? It was different, that was all. You're so concerned that you cannot give her what a richer or more traditional family set up could give her. If it helps, I'll show you a secret:
Does that look like a child lacking in joy? In curiosity? In happiness? In love? Children don't care about second-hand or third-hand, about whether the outing was free or cost money and any such prejudice is years off. You can cross that bridge when you come to it; I still haven't yet but I am less scared to now when it comes. But what you need is security and I'm telling you that you can and will provide that. It's so much more intricate than you think and yet so simple. This evening, that same little girl threw her arms around my neck and pulled herself into my lap presenting me with her favourite book. She snuggled into my neck at 8pm, sleepily. Every time I think that someone else may have had that privilege my heart nearly stops. Please let yourself feel, your breed of "rationality" is so far removed from your actual life that it will do you no good to torture yourself with your perceived shortcomings. You are a mother and that is enough. I could tell you all her favourite things, her quirks, her progress, about her funny faces, her noises, her likes, her dislikes, but I'll let you have that fun for yourself.
I can promise you will never ever regret it for a second. You may be tested again and again, you will know grief and sorrow and true fear but you will also know the greatest joys and the most wonderful feelings in the world.
With all my heart,
Me-Two-Years-On
xxx
A bit of background: in the days and weeks following Wriggles' surprise appearance I struggled with the idea that I could be any kind of a parent and provide for her and briefly looked to adoption or foster care, such was my conviction that I would never be able to give her the future I had once dreamt of giving my dream "first child". The further the process got, the clearer I began to actually feel things and realise exactly what I would miss out on, and how that dreams are just that: dreams. That we can create new and better dreams and try and find a route back to our old ones through a different path. And I am so glad I stopped trying to be so "rational" and realised that there is no such thing as perfection, except possibly your own child, who is thankfully only metres away from me asleep now!
Monday, October 1
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