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.
Saturday, March 30
Thursday, March 28
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!
Sunday, March 24
Brrrrroom brrrooooom
As we are preparing to move house, I have been ever so slightly getting cold feet about moving my toddler. Although this is not the first flat we have lived in (and lord knows we have spent enough time in hospital), this is the one she has done most of her growing up in and the one she remembers. The one she learnt to sit in, pull up to stand, climb up the sofa and hide in cupboards. She can say "home" and signs it regularly, and when we walk up the road towards the bright orange new-build blocks we currently live in, she arms flaps with excitement. It is not perfect by any means (most specifically the ever increasing crime rate and resident police van in the car park!) but in our little 4 walls, we are happy. It is a happy home. It is my sanctuary where I can relax and feel safe. I have been very firm so far with myself packing to push the emotions to one side trying to focus on the good bits of moving and new opportunities, but I will miss the building we made a home for two years.
Besides which, it has got a just-the-right-height window sill to play cars on!
Besides which, it has got a just-the-right-height window sill to play cars on!
Culture Vultures
These last few weeks, we have been branching out and daring to socialise a bit more in the world of Small Children and have been to two events in particular which both Wriggles and I loved. Both I was quite apprehensive about booking as her attention span is notorious for being similar to that of a gnat. However, they were both rarely affordable so we braved them and I'm so glad we did!
These last weeks, we went to Wriggles' first "gig" if you can call it that! Folk duo Megson have recently produced an album specifically for young children. "When I was a Lad" is a mix of traditional songs and ones written by Debbie and Stuart Hanna. The self-penned songs fit in beautifully with the older songs. One of our favourites is "All The Shops Have Fallen Down" which is an amusing ode to the decline of the British high street. We listened to a few songs on Soundcloud before going, but most of it was a surprise and all new. The layout of the Sage's Hall Two meant that as soon as we went in, I met my attention-nemesis: stairs. "s'Deps!" gleefully shouted my toddler. I tried to hurry her down them only for her to find an identical few on the other side of the room. However that side was slightly less busy as the floorspace was filled with soft mats and small children, so I resigned myself to creeping up and down some stairs in the dark between songs. We are still very much experimenting with "no" and sometimes, in public, an easy life is called for! I managed to wrestle her onto my lap for the first song, which was rather lucky as tears began to prick my eyes once the music started. It was even quite a jolly song, but something about the rawness of music has a terrible habit of choking me up these days. In the worst bits of PTSD, I used to regularly get panic attacks at music groups and all but cut out listening to music other than the drone of a radio as it made me "feel" too much. Inviting it back into our lives has been really quite joyous; and also is a stark reminder how much I struggled without realising to have something so simple, wonderful and unrelated cut me up so much. The concert was one of those rare occassions where time slips by, and before you know it a good half an hour has elapsed. A few songs I half-recognised from a folk-based childhood and many were easy to pick up. Megson knew their audience well, and had two bubble machines which had a captive audience is raptures. It could have easily turned into fairy-liquid-based pandemonium, but the music was still the overriding element and the bubbles seemed to work in engaging the children more rather than detracting from the experience. We loved every minute; despite not sitting still for more than a minute (and attempting to shamefully charm a poor Granny between songs) Wriggles really did appear to enjoy herself. We listen to the CD regualrly at home, and she has picked up very quickly on certain favourites and the odd sounds and actions. Clearly you don't have to sit still to take it all in! Since the gig, Wriggles claps enthusiastically after she hears every song, be it on their CD, any old rubbish on the radio and sometimes after I start caterwauling a nursery rhyme. She has always seemed very at home at music-based toddler groups and responded best to sounds out of sensory input, so I'm so glad that live music seems to be a natural progression. I've been eagerly devouring the Sage brochure for any further child-friendly events and can't wait to start collecting ticket stubs together. Music was an integral part of my own growing up and is something I really want her to experience, especially in this growing digital age. We will have no hesitation in seeing Megson again and if they are touring near you, do go.
Last weekend was awful, Wriggles caught a stomach bug and as soon as she recovered swiftly passed it on to me. Neither of us could hold even water down, so when we were both human again a treat seemed in order. Northern Ballet have developed a ballet for pre-school children; "The Ugly Duckling". When I'd first seen a flyer I really wanted to take Wriggles, but held out any hope of getting her to sit still for 45 minutes. However after 36 hours of being hunched over a bowl, I thought just leaving the house was worth a try so we headed over to Dance City and I prayed she was not feeling too energetic. As luck would have it, there was a trio of real musicians to play the score and our seats were very nearby. Even if the dancers had never made it on the stage, I suspect Wriggles would have sat transfixed by the sounds of the cello, oboe and flute. Her eyes constantly fitted between the dancing and any new notes creeping in. The choreography had a great mix of humour with a fairly clear narrative as well as showcasing a great first introduction to ballet. Although the audience seemed to be a good 80% or more small girls in tiaras with fairy wands, I didn't think there was anything overtly girly about the production and the boys dancing were both athletic and very funny, especially as frogs. My Wriggler only started to become antsy towards the very, very end which I was very surprised by. Evidently she was drawn into the spectacle as much as I! Northern Ballet are going to produce another show for the pre-school audience in October 2013 which we will definitely look out for. I knew that they have struggled with funding over the last few years, and it was both heartening and a relief to know that quality dance is still accessible and thriving in the North. Whilst it is brilliant we have the plethora of companies and arts organisations in London and the south, it is so important that everyone gets the chance especially whilst young, to be introduced to all these platforms. It might not be everyone's cup of tea and it might not be a priority in these economic times, but arts and culture is something which makes gloomier times bearable and encourages routes of expression which can otherwise become bottled up. My degree was in the arts and I was quite passionate about people having the right to be part of the arts, no matter what background and after graduating become a little jaded and cynical by how the jobs market was and how arts funding seemed to be dropping off the face of the planet. Now Wriggles is at the stage where she is interested in the world, I care a lot more again. I want her to grow up in a world where she can see dancing ducklings and know what a violin sounds like! I've noticed that adverts for The Ugly Duckling have been appearing for it on Cbeebies (albeit gatecrashed by Mr Bloom and friends; please no ballerina potatoes to ruin it) and I do urge to watch it. Live it was an absolute delight and one I would happily go back to see again even without a toddler!
These last weeks, we went to Wriggles' first "gig" if you can call it that! Folk duo Megson have recently produced an album specifically for young children. "When I was a Lad" is a mix of traditional songs and ones written by Debbie and Stuart Hanna. The self-penned songs fit in beautifully with the older songs. One of our favourites is "All The Shops Have Fallen Down" which is an amusing ode to the decline of the British high street. We listened to a few songs on Soundcloud before going, but most of it was a surprise and all new. The layout of the Sage's Hall Two meant that as soon as we went in, I met my attention-nemesis: stairs. "s'Deps!" gleefully shouted my toddler. I tried to hurry her down them only for her to find an identical few on the other side of the room. However that side was slightly less busy as the floorspace was filled with soft mats and small children, so I resigned myself to creeping up and down some stairs in the dark between songs. We are still very much experimenting with "no" and sometimes, in public, an easy life is called for! I managed to wrestle her onto my lap for the first song, which was rather lucky as tears began to prick my eyes once the music started. It was even quite a jolly song, but something about the rawness of music has a terrible habit of choking me up these days. In the worst bits of PTSD, I used to regularly get panic attacks at music groups and all but cut out listening to music other than the drone of a radio as it made me "feel" too much. Inviting it back into our lives has been really quite joyous; and also is a stark reminder how much I struggled without realising to have something so simple, wonderful and unrelated cut me up so much. The concert was one of those rare occassions where time slips by, and before you know it a good half an hour has elapsed. A few songs I half-recognised from a folk-based childhood and many were easy to pick up. Megson knew their audience well, and had two bubble machines which had a captive audience is raptures. It could have easily turned into fairy-liquid-based pandemonium, but the music was still the overriding element and the bubbles seemed to work in engaging the children more rather than detracting from the experience. We loved every minute; despite not sitting still for more than a minute (and attempting to shamefully charm a poor Granny between songs) Wriggles really did appear to enjoy herself. We listen to the CD regualrly at home, and she has picked up very quickly on certain favourites and the odd sounds and actions. Clearly you don't have to sit still to take it all in! Since the gig, Wriggles claps enthusiastically after she hears every song, be it on their CD, any old rubbish on the radio and sometimes after I start caterwauling a nursery rhyme. She has always seemed very at home at music-based toddler groups and responded best to sounds out of sensory input, so I'm so glad that live music seems to be a natural progression. I've been eagerly devouring the Sage brochure for any further child-friendly events and can't wait to start collecting ticket stubs together. Music was an integral part of my own growing up and is something I really want her to experience, especially in this growing digital age. We will have no hesitation in seeing Megson again and if they are touring near you, do go.
Last weekend was awful, Wriggles caught a stomach bug and as soon as she recovered swiftly passed it on to me. Neither of us could hold even water down, so when we were both human again a treat seemed in order. Northern Ballet have developed a ballet for pre-school children; "The Ugly Duckling". When I'd first seen a flyer I really wanted to take Wriggles, but held out any hope of getting her to sit still for 45 minutes. However after 36 hours of being hunched over a bowl, I thought just leaving the house was worth a try so we headed over to Dance City and I prayed she was not feeling too energetic. As luck would have it, there was a trio of real musicians to play the score and our seats were very nearby. Even if the dancers had never made it on the stage, I suspect Wriggles would have sat transfixed by the sounds of the cello, oboe and flute. Her eyes constantly fitted between the dancing and any new notes creeping in. The choreography had a great mix of humour with a fairly clear narrative as well as showcasing a great first introduction to ballet. Although the audience seemed to be a good 80% or more small girls in tiaras with fairy wands, I didn't think there was anything overtly girly about the production and the boys dancing were both athletic and very funny, especially as frogs. My Wriggler only started to become antsy towards the very, very end which I was very surprised by. Evidently she was drawn into the spectacle as much as I! Northern Ballet are going to produce another show for the pre-school audience in October 2013 which we will definitely look out for. I knew that they have struggled with funding over the last few years, and it was both heartening and a relief to know that quality dance is still accessible and thriving in the North. Whilst it is brilliant we have the plethora of companies and arts organisations in London and the south, it is so important that everyone gets the chance especially whilst young, to be introduced to all these platforms. It might not be everyone's cup of tea and it might not be a priority in these economic times, but arts and culture is something which makes gloomier times bearable and encourages routes of expression which can otherwise become bottled up. My degree was in the arts and I was quite passionate about people having the right to be part of the arts, no matter what background and after graduating become a little jaded and cynical by how the jobs market was and how arts funding seemed to be dropping off the face of the planet. Now Wriggles is at the stage where she is interested in the world, I care a lot more again. I want her to grow up in a world where she can see dancing ducklings and know what a violin sounds like! I've noticed that adverts for The Ugly Duckling have been appearing for it on Cbeebies (albeit gatecrashed by Mr Bloom and friends; please no ballerina potatoes to ruin it) and I do urge to watch it. Live it was an absolute delight and one I would happily go back to see again even without a toddler!
Thursday, March 21
Rant
Today, I recieved a letter from one of the Health Visiting team. It requested arranging a home visit to "see how I was doing and if they could offer any support."
The letter infuriated me.
It wasn't the offer of thinking about support but rather, the time that has elapsed since my Health Visitor has tried to make contact with us. The last time I saw her, I told her I was still really struggling with depression and anxiety and felt really isolated due to our (recurrent) hospital based experiences.
In that time, she has gone on maternity leave and evidently returned to work (ie. its been a while).
In that time, my daughter has recieved an official diagnosis for cerebral palsy. She has also gone from having recognised feeding problems to being entirely tube fed.
In that time we have had at least five admissions if not more to hospital, including one lasting nearly 3 weeks. This does not include planned surgery, a sleep study or sedated MRI. They will know all of this and above because the hospital sent letters for the health visiting team and my GP.
In that time, I had a minor breakdown and was signed off work for a bit. Before being made redundant anyway.
In that time, I inadvertantly stopped taking anti-depressants and am still standing. Just about.
In that time I am still a single parent with no local family, for what that is worth.
Call me needy or melodramatic, but surely at least some of that is worth a call to just say "by the way, how are you both doing?"?
I know the reality is those who shout loudest get the most help, but sometimes you are exhausted fighting on behalf of your child for a whole different set of things to carry on fighting for yourself.
Then, after a rather splashy, giggly bathtime I had a different thought.
Fuck it.
It's been quite a year and we're still here. Still standing. Still smiling (most of the time). We have bad days. We have really crap days. But the good days outnumber the shit ones. I'm not the best mum, but I'm an alright one. Luckily for them, we haven't desperately needed extra support. Hands up, it would have been really nice, really reassuring, but we've done it without the health visiting team putting their oar in. We've had some support along the way from people who aren't employed to support us in that way, like off the community physio and my counsellor when I was still seeing her, as well as being blessed with a great family, friends and an outstanding network of fellow parents facing difficult challenges.
On a more serious note, it does make me worry for families really desperate for support. I know times when I have asked before and they simply didn't know what to suggest so didn't suggest anything. Sometimes when they just didn't answer and sometimes when they said "I don't know" and didn't do anything further. I've been lucky to always have other people around who knew an answer or at least a suggestion to help. But some families won't have that, especially if at the beginning of something difficult. I don't doubt that there are many exemplary health visitors out there who do care and do go the extra mile. But there are also a lot I think, that ignore their responsibilities as being the first port of call for many parents asking who help. And they have a lot to learn to join up the dots so that families don't get to the point of being desperate for help, but have some semblance of that a long time before that point.
The letter infuriated me.
It wasn't the offer of thinking about support but rather, the time that has elapsed since my Health Visitor has tried to make contact with us. The last time I saw her, I told her I was still really struggling with depression and anxiety and felt really isolated due to our (recurrent) hospital based experiences.
In that time, she has gone on maternity leave and evidently returned to work (ie. its been a while).
In that time, my daughter has recieved an official diagnosis for cerebral palsy. She has also gone from having recognised feeding problems to being entirely tube fed.
In that time we have had at least five admissions if not more to hospital, including one lasting nearly 3 weeks. This does not include planned surgery, a sleep study or sedated MRI. They will know all of this and above because the hospital sent letters for the health visiting team and my GP.
In that time, I had a minor breakdown and was signed off work for a bit. Before being made redundant anyway.
In that time, I inadvertantly stopped taking anti-depressants and am still standing. Just about.
In that time I am still a single parent with no local family, for what that is worth.
Call me needy or melodramatic, but surely at least some of that is worth a call to just say "by the way, how are you both doing?"?
I know the reality is those who shout loudest get the most help, but sometimes you are exhausted fighting on behalf of your child for a whole different set of things to carry on fighting for yourself.
Then, after a rather splashy, giggly bathtime I had a different thought.
Fuck it.
It's been quite a year and we're still here. Still standing. Still smiling (most of the time). We have bad days. We have really crap days. But the good days outnumber the shit ones. I'm not the best mum, but I'm an alright one. Luckily for them, we haven't desperately needed extra support. Hands up, it would have been really nice, really reassuring, but we've done it without the health visiting team putting their oar in. We've had some support along the way from people who aren't employed to support us in that way, like off the community physio and my counsellor when I was still seeing her, as well as being blessed with a great family, friends and an outstanding network of fellow parents facing difficult challenges.
On a more serious note, it does make me worry for families really desperate for support. I know times when I have asked before and they simply didn't know what to suggest so didn't suggest anything. Sometimes when they just didn't answer and sometimes when they said "I don't know" and didn't do anything further. I've been lucky to always have other people around who knew an answer or at least a suggestion to help. But some families won't have that, especially if at the beginning of something difficult. I don't doubt that there are many exemplary health visitors out there who do care and do go the extra mile. But there are also a lot I think, that ignore their responsibilities as being the first port of call for many parents asking who help. And they have a lot to learn to join up the dots so that families don't get to the point of being desperate for help, but have some semblance of that a long time before that point.
Tuesday, March 12
Mothers Day actual
After a hard week re-living unpleasant memories, I'll be honest, Mothers Day wasn't high on my list of things to look forward too. We wouldn't be with my own mother so it felt a bit of a non-event for me. Without a partner to "help" my daughter make a card or express a glitter-splattered creation, it felt a little flat on my behalf. As so many times, the grandparents came to the rescue. Funny how a little card can make all the difference. It gave me a much needed bit of strength to pull myself up and focus on the person who made me a mother.
As it was snowing, the options were indoors only. In the end, I decided that we would jump on a metro to the Sage where a free lunchtime performance was promised. Sadly, this didn't actually materialise but we still had a really nice afternoon. By the time we got there, we had some lunch (Wriggles even had a crumb of bread as well as some Quavers; there was my gift right there!) which was delicious and then to Wriggles' true love: the stairs.
We only recently re-discovered the Sage. Pre-child I knew it quite well and have been to many concerts there as well as admiring the river view and impressive-yet-bonkers architecture. Apart from attending an event, I had no idea of there being anything child friendly about it. It turns out there is a fantastic under 5s music group every day of the week with a little area on the concourse with a table, chairs and some toys and books. However, these pale into comparison for my toddler with the many staircases. I have no idea what the pull of stairs are for her, but I do admit to shamelessly indulging it as it is brilliant physio for her and brings such a smile!
I spoke to my own wonderful mum in the afternoon, which put a good end to the day. Her voice still grounds me and makes me smile, and without her devotion to us and unwavering support I wouldn't be able to be half the mother I am today. Wriggles adores her too, unsurprisingly, and it makes my heart smile to see them together. And hopefully it won't be too long before we get that again!
As it was snowing, the options were indoors only. In the end, I decided that we would jump on a metro to the Sage where a free lunchtime performance was promised. Sadly, this didn't actually materialise but we still had a really nice afternoon. By the time we got there, we had some lunch (Wriggles even had a crumb of bread as well as some Quavers; there was my gift right there!) which was delicious and then to Wriggles' true love: the stairs.
We only recently re-discovered the Sage. Pre-child I knew it quite well and have been to many concerts there as well as admiring the river view and impressive-yet-bonkers architecture. Apart from attending an event, I had no idea of there being anything child friendly about it. It turns out there is a fantastic under 5s music group every day of the week with a little area on the concourse with a table, chairs and some toys and books. However, these pale into comparison for my toddler with the many staircases. I have no idea what the pull of stairs are for her, but I do admit to shamelessly indulging it as it is brilliant physio for her and brings such a smile!
I spoke to my own wonderful mum in the afternoon, which put a good end to the day. Her voice still grounds me and makes me smile, and without her devotion to us and unwavering support I wouldn't be able to be half the mother I am today. Wriggles adores her too, unsurprisingly, and it makes my heart smile to see them together. And hopefully it won't be too long before we get that again!
Wednesday, March 6
Sunday
Mother's Day.
I'm not really looking forward to it.
I feel I should love it, cherish it and feel proud of myself that day.
But it makes me remember too much.
Now, in the run up, like last year, my thoughts are constantly back at my first Mother's Day. Sunday 3rd April 2011. Spent in an isolated cubicle in PICU with my critically ill baby in an induced medical coma. I remember it vividly, the whole day. That whole weekend.
Our trip to PICU wasn't supposed to be the length it was. It was supposed to be a few days to help Wriggles over the worst of her illness. It was not supposed to nearly cost her her life. We came in Tuesday morning. Friday morning they were confident about extubating. The hours ticked by, then just before lunch they proceeded. I got to hold her for the first time since Tuesday morning. Oh sweet joy to have her, albeit semi-unconscious, on my lap.
20 minutes.
20 bloody minutes.
And she collapsed. The team rushed in and they had to put her back on the ventilator. The room stopped, I was frozen as the alarms sounded and the room swarmed. As they worked quickly to re-intubate I broke and called my best friend in tears. I couldn't say anything but "just come, please come." And she did. My angel that day. And what an angel I needed.
After re-intubating, Wriggles took a lot of knocking out. From 2pm to 11pm. They kept increasing and increasing, adding in more and more drugs to try and get her under. Just before she finally succumbed to her chemical sleep they remarked they'd in effect sedated a herd of elephants with the amount of drugs they'd pumped in her tiny body.
As she drifted off, Nicola the nurse and my friend A tried to distract me. We talked about Nicola's forthcoming wedding and gave verdicts on her dress options she scrolled through on her iPhone. It was a little tense, but hooked up to the ventilator, Wriggles finally at peace, the rest of the night looked simple. But I couldn't leave. I put it off and put it off. Midnight ticked by. I just couldn't leave.
And then it happened.
Nothing outward, nothing obvious.
But in a flash, Nicola had pulled the crash buzzer and the alarms had gone mad.
Wriggles had gone into cardiac arrest.
I've never seen people move so fast, so quick. Never knew there were that many "spare" doctors and nurses on a unit. But here they were. Shouting numbers and instructions. Adrenaline. Chest compressions. More shouting. Bagging.
We sat, A and I gripped in fear. In shock.
1 minute 30 seconds was all her heart had stopped for.
The longest 1 minute 30 seconds I have ever, ever, ever known. It could have been hours for what I knew. I was shocked when I saw it written down later. Only 1 minute 30 seconds? But it went on for so much longer.... And of course, the fuss did. Stabilising her was much longer than 1 minute 30 seconds. Because in that time, the game has changed. The odds had gone from her being a little sicker than suspected to not knowing if she would be there the next evening.
It was April Fools Day. Ha fucking ha.
Saturday was very bleak. She needed bagging several times as stopped breathing even on the ventilator. Her blood pressure was far from stable and continued to drop throughout the day, upping the odds of a second cardiac arrest. She went from 15 minute obs. To ten minute. To five minutes. To continuous.
"She is very, very sick indeed."
I was told she was the most unstable patient at that point in PICU.
Gently, they told me I should call family. Make sure people could come.
On Mothering Sunday, our nurse was Dominic. He had his own baby girl, just days apart from Wriggles. I think he felt it quite keenly, the close ages of them. He was very, very compassionate. When I came in, he had given her a bed bath and dressed her gently in a pink and red striped sleepsuit with the front open for medical access. Her Sunday best. And there on the side there was a bright orange card in the shape of a teapot with a poem and stapled teabag. Wriggles has somehow found time to wake up and wield a felt tip pen! To this day, that card is one of my most cherished possessions. It meant so, so, so much that someone remembered. Remembered even in the sickest situations that mothers were not just desperately hurting and scared but needed celebrating. My friends came in and bought me a card. My parents bought me a card. I kept them all. Over in the parents accommodation, they were my solace on the bedtime table. My arms ached for my baby girl, my nights bleak without the breaks of night feeds. The room was quiet, too quiet. The cards filled that gap just a little. They gave me some strength.
And my mother came, and would stay for the next fortnight whilst we held our breath before finally coming home. Mothers are amazing creatures. I never needed someone so much.
But that is what I will always, or at least for now, think. That first Mothering Sunday. The worst weekend of my life. One I wish I could forget. The kindness of others was incredible. Our family, my friends, some wonderful nurses who went beyond their duties; but it doesn't take away from what happened.
Last Mother's Day, Wriggles "made" a card at nursery. Two purple splodge hand prints on pink card. I cried like anything when nursery handed it over. They didn't know the significance; last year she was holding on to life by a thread. This year she is painting cards! Why can't that memory block out the other one? Why must I re-live that first day? That first I didn't want?
This year will be better still. I has to be better still.
But right now, I just want to get it over with. I know I will re-live the dates, a month later in the same way. The same anniversary of the same thing. So please brain, in light of that let me forget just a little this Sunday!
Because there are so many nice things to remember.
Because there is this:
Which two years ago this Sunday, I wouldn't let myself dream I could have.
I'm not really looking forward to it.
I feel I should love it, cherish it and feel proud of myself that day.
But it makes me remember too much.
Now, in the run up, like last year, my thoughts are constantly back at my first Mother's Day. Sunday 3rd April 2011. Spent in an isolated cubicle in PICU with my critically ill baby in an induced medical coma. I remember it vividly, the whole day. That whole weekend.
Our trip to PICU wasn't supposed to be the length it was. It was supposed to be a few days to help Wriggles over the worst of her illness. It was not supposed to nearly cost her her life. We came in Tuesday morning. Friday morning they were confident about extubating. The hours ticked by, then just before lunch they proceeded. I got to hold her for the first time since Tuesday morning. Oh sweet joy to have her, albeit semi-unconscious, on my lap.
20 minutes.
20 bloody minutes.
And she collapsed. The team rushed in and they had to put her back on the ventilator. The room stopped, I was frozen as the alarms sounded and the room swarmed. As they worked quickly to re-intubate I broke and called my best friend in tears. I couldn't say anything but "just come, please come." And she did. My angel that day. And what an angel I needed.
After re-intubating, Wriggles took a lot of knocking out. From 2pm to 11pm. They kept increasing and increasing, adding in more and more drugs to try and get her under. Just before she finally succumbed to her chemical sleep they remarked they'd in effect sedated a herd of elephants with the amount of drugs they'd pumped in her tiny body.
As she drifted off, Nicola the nurse and my friend A tried to distract me. We talked about Nicola's forthcoming wedding and gave verdicts on her dress options she scrolled through on her iPhone. It was a little tense, but hooked up to the ventilator, Wriggles finally at peace, the rest of the night looked simple. But I couldn't leave. I put it off and put it off. Midnight ticked by. I just couldn't leave.
And then it happened.
Nothing outward, nothing obvious.
But in a flash, Nicola had pulled the crash buzzer and the alarms had gone mad.
Wriggles had gone into cardiac arrest.
I've never seen people move so fast, so quick. Never knew there were that many "spare" doctors and nurses on a unit. But here they were. Shouting numbers and instructions. Adrenaline. Chest compressions. More shouting. Bagging.
We sat, A and I gripped in fear. In shock.
1 minute 30 seconds was all her heart had stopped for.
The longest 1 minute 30 seconds I have ever, ever, ever known. It could have been hours for what I knew. I was shocked when I saw it written down later. Only 1 minute 30 seconds? But it went on for so much longer.... And of course, the fuss did. Stabilising her was much longer than 1 minute 30 seconds. Because in that time, the game has changed. The odds had gone from her being a little sicker than suspected to not knowing if she would be there the next evening.
It was April Fools Day. Ha fucking ha.
Saturday was very bleak. She needed bagging several times as stopped breathing even on the ventilator. Her blood pressure was far from stable and continued to drop throughout the day, upping the odds of a second cardiac arrest. She went from 15 minute obs. To ten minute. To five minutes. To continuous.
"She is very, very sick indeed."
I was told she was the most unstable patient at that point in PICU.
Gently, they told me I should call family. Make sure people could come.
On Mothering Sunday, our nurse was Dominic. He had his own baby girl, just days apart from Wriggles. I think he felt it quite keenly, the close ages of them. He was very, very compassionate. When I came in, he had given her a bed bath and dressed her gently in a pink and red striped sleepsuit with the front open for medical access. Her Sunday best. And there on the side there was a bright orange card in the shape of a teapot with a poem and stapled teabag. Wriggles has somehow found time to wake up and wield a felt tip pen! To this day, that card is one of my most cherished possessions. It meant so, so, so much that someone remembered. Remembered even in the sickest situations that mothers were not just desperately hurting and scared but needed celebrating. My friends came in and bought me a card. My parents bought me a card. I kept them all. Over in the parents accommodation, they were my solace on the bedtime table. My arms ached for my baby girl, my nights bleak without the breaks of night feeds. The room was quiet, too quiet. The cards filled that gap just a little. They gave me some strength.
And my mother came, and would stay for the next fortnight whilst we held our breath before finally coming home. Mothers are amazing creatures. I never needed someone so much.
But that is what I will always, or at least for now, think. That first Mothering Sunday. The worst weekend of my life. One I wish I could forget. The kindness of others was incredible. Our family, my friends, some wonderful nurses who went beyond their duties; but it doesn't take away from what happened.
Last Mother's Day, Wriggles "made" a card at nursery. Two purple splodge hand prints on pink card. I cried like anything when nursery handed it over. They didn't know the significance; last year she was holding on to life by a thread. This year she is painting cards! Why can't that memory block out the other one? Why must I re-live that first day? That first I didn't want?
This year will be better still. I has to be better still.
But right now, I just want to get it over with. I know I will re-live the dates, a month later in the same way. The same anniversary of the same thing. So please brain, in light of that let me forget just a little this Sunday!
Because there are so many nice things to remember.
Because there is this:
Which two years ago this Sunday, I wouldn't let myself dream I could have.
Tuesday, March 5
Round-up
I have been taking a little break from blogging recently, as partly we have been out doing nice things and also I found been having an internal battle as to what every day sometimes entails. Sometimes it feels I am making an enormous fuss over what is so little compared to others and sometimes it feels very hard when I see other people who have has it 'easier'.
Here is some of what we have been up to:
We started looking at trying partial blended diet in the new year and have now swapped at least one bolus feed of Paediasure for blended food per day. This has been a bit of a rocky trial but seems to have now levelled out. It may have been complete coincidence with a reflux flare-up, but after started upping food volumes Wriggles began having problems tolerating her formula which she needs to as it supplies her entire dietary needs! Even with blended diet, at least 70% roughly of her calories and nutritional intake is still reliant on the formula. We tried adding carobel to the formula with no results apart from much thicker vomit. I was really torn in two minds about carrying on, or just trying to get back on track keeping feeds down and making Wriggles as comfortable as possible and decided to press on, just another week. In the last fortnight we seem to have turned a corner. She now has a breakfast blend of 100-150ml (depending on the calorie density) of porridge and fruit puree with an added probiotic and spoonful of Manuka honey. I knew from the rare forays into spoon feeding in the past her gut tolerates most fruits and porridge/grains so knew these would be safe for her. I started swapping roughly calorie for calorie and adding flushes of extra fluid throughout the morning for hydration. Almost immediately her bowel movements were noticeably different (in a good way). Also, more recently she has begun to show either hunger or curiosity much earlier in the day. Before, I would give her a bolus of 100ml Paediasure around 9:30am and would try and push back her "lunch" bolus to try and elicit some symptoms of hunger from her. Day in day out, it would get to gone 2pm (around an hour and a half past her scheduled feed) at which point I would just feed her to keep her hydration and sugar levels stable. She just didn't seem to register hunger or was that hell-bent on not wanting food! Also over the last few weeks we have perfected the Makaton for "lunch" accompanied by a "llllllll" sound, and this last week, Wriggles will sign "lunch" and start eating Quavers. Alright, the main oral intake she has is Quavers. We have tried one or two other food items, but Quavers are (still) the predominant item of choice. But, until mid-February she was on a near all-out boycott of all food and was sliding back to being ridiculous in food-based situations so frankly I don't care. I'd rather they were less yellow, but I'll take them. She even touched a slice of banana on Friday. That sounds pathetic but honestly, that is HUGE.
Physio is still going really well. There are no big or obvious leaps, but Wriggles is very slowly getting steadier on her feet. She has had one or two moments where she stands for a few seconds (albeit hunched over like Quasimodo where she can't straighten her legs out fully or shift her weight to be upright) before toppling, although these massively come and go. She did a handful of times before Christmas, then once again last week and nothing since! If nothing else though it gives me a glimpse her brain and muscles are making connections and things will come. Right now our Friday group is the highlight of the week I look forward too. I know it is good for Wriggles and it is so good to speak to other parents of not medically-perfect children. It's a place you don't need to keep a brave face on and where you can celebrate the tiny stuff that everyone else knows is actually gigantic.
Last week we had our six-monthly development review with her paediatrician, Dr W. I do slightly wish the respiratory doctors coordinated all of our care as they are the ones I trust implicitly and respect the most, although Dr W is still good. It was an odd appointment; largely quite positive although I came out feeling very confused and quite deflated. These things really stir up emotion; essentially sitting in a room and discussing your child's shortcomings for an hour can be exhausting. I'm still getting my head around it a few days later. There are no real changes from it and much more watching and waiting. The general consensus is that she is still around a year developmentally delayed on average, although now she is getting this is definitely more an "average" as some areas are getting progressively more noticeably delayed whilst others are far less of a worry. It is hard as the paeds, although obviously very clever with a lot of experience, only see snapshots. I tend to trust for instance, our physio more because she sees Wriggles much, much more regularly and has a good idea not just of her capabilities and limits but how her personality and surroundings will influence those.
The biggest news really is housing. We have provisionally be accepted for an upper Tyneside flat in an area we like! So far, the paperwork has been exceptionally minimal and we haven't actually yet seen the inside so I am trying to be very cautious but am inside bubbling with intrepidation and excitement! So much of the past months I have lamented moving, and now it is near I feel quite impatient to find a new haven and settle down in the place that should see Wriggles take her first steps and through primary school. So if I disappear again, then we're moving hopefully!
Here is some of what we have been up to:
We started looking at trying partial blended diet in the new year and have now swapped at least one bolus feed of Paediasure for blended food per day. This has been a bit of a rocky trial but seems to have now levelled out. It may have been complete coincidence with a reflux flare-up, but after started upping food volumes Wriggles began having problems tolerating her formula which she needs to as it supplies her entire dietary needs! Even with blended diet, at least 70% roughly of her calories and nutritional intake is still reliant on the formula. We tried adding carobel to the formula with no results apart from much thicker vomit. I was really torn in two minds about carrying on, or just trying to get back on track keeping feeds down and making Wriggles as comfortable as possible and decided to press on, just another week. In the last fortnight we seem to have turned a corner. She now has a breakfast blend of 100-150ml (depending on the calorie density) of porridge and fruit puree with an added probiotic and spoonful of Manuka honey. I knew from the rare forays into spoon feeding in the past her gut tolerates most fruits and porridge/grains so knew these would be safe for her. I started swapping roughly calorie for calorie and adding flushes of extra fluid throughout the morning for hydration. Almost immediately her bowel movements were noticeably different (in a good way). Also, more recently she has begun to show either hunger or curiosity much earlier in the day. Before, I would give her a bolus of 100ml Paediasure around 9:30am and would try and push back her "lunch" bolus to try and elicit some symptoms of hunger from her. Day in day out, it would get to gone 2pm (around an hour and a half past her scheduled feed) at which point I would just feed her to keep her hydration and sugar levels stable. She just didn't seem to register hunger or was that hell-bent on not wanting food! Also over the last few weeks we have perfected the Makaton for "lunch" accompanied by a "llllllll" sound, and this last week, Wriggles will sign "lunch" and start eating Quavers. Alright, the main oral intake she has is Quavers. We have tried one or two other food items, but Quavers are (still) the predominant item of choice. But, until mid-February she was on a near all-out boycott of all food and was sliding back to being ridiculous in food-based situations so frankly I don't care. I'd rather they were less yellow, but I'll take them. She even touched a slice of banana on Friday. That sounds pathetic but honestly, that is HUGE.
Physio is still going really well. There are no big or obvious leaps, but Wriggles is very slowly getting steadier on her feet. She has had one or two moments where she stands for a few seconds (albeit hunched over like Quasimodo where she can't straighten her legs out fully or shift her weight to be upright) before toppling, although these massively come and go. She did a handful of times before Christmas, then once again last week and nothing since! If nothing else though it gives me a glimpse her brain and muscles are making connections and things will come. Right now our Friday group is the highlight of the week I look forward too. I know it is good for Wriggles and it is so good to speak to other parents of not medically-perfect children. It's a place you don't need to keep a brave face on and where you can celebrate the tiny stuff that everyone else knows is actually gigantic.
Last week we had our six-monthly development review with her paediatrician, Dr W. I do slightly wish the respiratory doctors coordinated all of our care as they are the ones I trust implicitly and respect the most, although Dr W is still good. It was an odd appointment; largely quite positive although I came out feeling very confused and quite deflated. These things really stir up emotion; essentially sitting in a room and discussing your child's shortcomings for an hour can be exhausting. I'm still getting my head around it a few days later. There are no real changes from it and much more watching and waiting. The general consensus is that she is still around a year developmentally delayed on average, although now she is getting this is definitely more an "average" as some areas are getting progressively more noticeably delayed whilst others are far less of a worry. It is hard as the paeds, although obviously very clever with a lot of experience, only see snapshots. I tend to trust for instance, our physio more because she sees Wriggles much, much more regularly and has a good idea not just of her capabilities and limits but how her personality and surroundings will influence those.
The biggest news really is housing. We have provisionally be accepted for an upper Tyneside flat in an area we like! So far, the paperwork has been exceptionally minimal and we haven't actually yet seen the inside so I am trying to be very cautious but am inside bubbling with intrepidation and excitement! So much of the past months I have lamented moving, and now it is near I feel quite impatient to find a new haven and settle down in the place that should see Wriggles take her first steps and through primary school. So if I disappear again, then we're moving hopefully!
Monday, March 4
Nice Things Of Recent
Playing at the seaside beach at Whitley Bay
A real steam train and playing with wooden trains at the Stephenson Railway Musuem
Taking a walk in Jesmond Dene
More steps at the Sunderland Winter Gardens
Our local gallery for an erm, culture vibe. At the Laing Art Gallery
Fish! At Blue Reef Aquarium
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