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.
Monday, October 15
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
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| 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.
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| 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!
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