Of the last few months, my blogging status has been utterly AWOL. Life and lack of inspiration got in the way, but with the impending World Prematurity Day I knew I meant to restart recording our story and especially on 17th November to join in sharing awareness with thousands of people about prematurity and the effects of it and how important it is to increase both neonatal and antenatal care. There is a common misconception that prematurity just means small, that is is an event which you leave behind and that children born preterm easily catch up.
Then 12 days ago our life took another rocking which has sharply brought into focus just how important this whole question of prematurity is, even in a medically advanced and developed country. Wriggles was born just under 28 weeks and is now 3 years old. She has lasting effects of prematurity but nothing severe especially compared to some children.
Two weeks ago she caught a cold and became rather snuffly. Nothing out of the ordinary, small children in this season are riddled with colds up and down the country. However it soon became apparent that as with previous times, Wriggles' below average lungs were not holding up brilliantly. We trundled into the hospital where we have open access, sat around for a few hours to be observed and left in time for the fireworks clutching antibiotics just in case. Through the night I grew more uneasy and by morning she was sucking in under her ribs to breathe. I rang the ward again to say we were coming in as I was concerned and so off we went again. On admission it was determined her oxygen levels were dangerously low and we were swiftly transferred to a side room for emergency treatment. Unfortunately she continued to deteriorate despite huge amounts of oxygen and other treatments and by dinner time we were transferred up to Intensive Care and she was put on a ventilator the following morning which she stayed on for 7 days. We stayed in intensive care for 11 days and are currently still in hospital, newly transferred to a specialist respiratory ward still on high pressure humidified oxygen. The isolated virus, RSV is notoriously nasty for premature children. It can be bad news for any young children, particularly babies but for those of us with premature children with chronic lung disease it can be very dangerous. As we found out. As a higher risk baby and one who had required home oxygen for a time, Wriggles received monthly vaccinations against the virus for her first two winters and for protection we cut down heavily on socialising during the season to avoid catching infections. This year, the respiratory team were delighted with her health and having grown to the grand age of 3, the risk factor was considerably lower than previously. Except of course, it wasn't. Because 3 years on, my beautiful daughter has still not recovered strength to effectively fight off such infections and instead had to fight for her life.
During the period we were on intensive care, an alarming percentage of the inpatients were those born prematurely. Some still tiny babies and some like us, who had hoped to have put our prematurity largely behind us. From fleeting visits to those who are longer term inpatients, it was a very stark reminder that prematurity is not just confined to special care units and baby days but is a very real and very scary condition that can impact throughout childhood and for some, into adulthood. It is easy to read the numbers and statistics but faced with a room full of desperate parents keeping vigil by their critically ill children it is hard for it to sink in why healthcare is not finding answers to preterm birth quick enough.
Saturday, November 16
Saturday, July 20
Post-tonsillectomy
For the second time in few weeks, we have waved goodbye to hospital and thankfully shut the front door and collapsed on the sofa back home (in front of Maisy Mouse: I now know most episodes off by heart).
We are now around 72 hours post-op and things seem to be getting better. So far we are infection free and she is still willing to eat small amounts of Quavers. Right up until this morning, Wriggles was still so groggy, tired and weak that she couldn't sit up by herself but today she has been regaining her strength and much more like "my" Wriggles. Just like last year when she had her operation to place the feeding tube and run tests, once she came around she would scream if she was anywhere but my lap. I think I had one bathroom break in 12 hours which was a quick dash to a screaming chorus in the background. It doesn't get easier seeing her in so much distress. As they put her to sleep with the gas, she was still screaming "BACK! GONE! BACK BACK BACK!" as her eyes rolled back and she gave in to the anaesthetic. It must be so horrid to not be able to fully understand a situation and be subjected to strangers doing horrible things to you, even if it is to ultimately help you. Thankfully they got me very promptly as soon as she was in recovery and I was able to hold her close not long after-and not let go for hours!
This time was probably the first time I've felt a bit let down by the hospital. Normally I think our hospital and the trust is the bees knees: it's not perfect and there have been several incidents that has annoyed me, but compared to many other people, the Great North Children's Hospital is pretty damn alright. The first thing was that in recovery they didn't have the equipment to attach a syringe to a feeding tube to give pain relief (you need either a certain type of syringe to screw on the cap and sometimes, an extension set). Whilst she had had some level of pain relief in theatre, she was clearly in a lot of pain still and had been written up for further medicine. Unfortunately, she couldn't have it because there was nothing to give it to her and her swallow isn't safe enough to take it orally (which is in her notes and I had told them before she went in. Several times). The second thing was that despite staying overnight and for the best part of the day afterwards, we never actually so much saw let alone spoke to a doctor after the operation. There were plenty about, but as the hospital is split up into lots of departments and specialities, everyone claimed she wasn't "their" patient so wouldn't add to their ward rounds or check in. As it was, she seemed ok, but I would really have appreciated even a junior doctor checking in, doing a quick once over to confirm she was ready for home. I, and nurse in charge, suspected that as strictly speaking we were there under ENT, who operate from the sister hospital on the other side of the city, the fact was no one could be bothered or had time to come back across to do the necessary checks that healing was underway. After 24 hours, Wriggles was struggling to hold down much in the way of food or drink but mainly because she was so distressed by the constant observations the nurses had to carry out. Once she started crying, she couldn't stop before being sick again. In the end, the nurse agreed to discharge us on the basis that we were covered by community nursing and would come back in if things deteriorated. At the point we went home, we should really have stayed in longer but luckily the nurses agreed that seeing if Wriggles calmed down at home to at least keep more feeds (and medication!) down would be better for her and thankfully that was the right choice.
Every time without fail I forget how temperamental her stomach and digestive system is to any change, let alone anaesthesia, so we are still struggling to reintroduce feeds and get them to stay down long enough to start digesting. I keep telling myself that the most important thing is fluids as if we didn't have the tube, it is entirely likely she may not be wanting to eat much at all anyway so it is drinks, drinks, drinks. I thought I'd cracked it last night with a decent overnight feed, and woke up to find the extension to the new feeding button had somehow come off, thus feeding mainly the mattress with formula and not my daughter. That rather set the tone for a fraught morning not helped by the fact the after being royally fiddled about with, Wriggles does not want anyone doing anything to her. Unfortunately as we have changed feeding tubes, the new ones needs an extension clipping on to administer things and Wriggles does not have the understanding that if she is to feel slightly less rubbish, I need to do about 5 seconds of fiddling in order to administer pain relief and a drink so she doesn't dehydrate (side note: thanks a bunch, heatwave for making sure I need to be even more diligent about shoving as much liquids into my child that she doesn't not want to absorb). As understanding and patient and empathetic as I am trying to be, I had a moment where I slightly lost the plot this morning. Leaving Cbeebies to babysit while I had a shower and fired off a pathetically sad email to my best friend helped as did eating an entire pack of chocolate biscuits (it was a very small pack. Ish) and me feeling a bit more human and maternal by the afternoon.
Poorly children are draining. On top of that, I am absolutely terrified about post operative bleeding, which would merit a 999 call and almost certainly a second operation, and every time Wriggles is sick, starts screaming or coughing a lot I am on knife-edge. One big positive (I think) it that her breathing at night is so much quieter; the immediate downside to this is that it is so quiet I find it hard to relax and sleep myself, safe in the knowledge she is still breathing correctly. Nearly 3 years of a child who sleeps like the sound of a very fidgety hedgehog with a blocked nose has made me very reassured by noise and I am not quite used to this new silent model. What didn't help was that in recovery, the surgeons requested 24 hours of apnoea monitoring before discharge. On the ward, the apnoea monitor kept playing up and going off every 5 minutes so everyone got very fed up and turned it off, deciding to rely on the oxygen saturation/heart rate levels instead. I think my mental state would have definitely benefited from the requested apnoea monitoring to give me some reassurance. Even when she was a baby on oxygen, I never seriously thought about having an oxygen or apnoea sensor at home as I thought it would drive me barmy and fuel my anxiety, but for the first time I am wondering the merits.
Onwards and upwards. As I keep saying every half hour to myself!
We are now around 72 hours post-op and things seem to be getting better. So far we are infection free and she is still willing to eat small amounts of Quavers. Right up until this morning, Wriggles was still so groggy, tired and weak that she couldn't sit up by herself but today she has been regaining her strength and much more like "my" Wriggles. Just like last year when she had her operation to place the feeding tube and run tests, once she came around she would scream if she was anywhere but my lap. I think I had one bathroom break in 12 hours which was a quick dash to a screaming chorus in the background. It doesn't get easier seeing her in so much distress. As they put her to sleep with the gas, she was still screaming "BACK! GONE! BACK BACK BACK!" as her eyes rolled back and she gave in to the anaesthetic. It must be so horrid to not be able to fully understand a situation and be subjected to strangers doing horrible things to you, even if it is to ultimately help you. Thankfully they got me very promptly as soon as she was in recovery and I was able to hold her close not long after-and not let go for hours!
This time was probably the first time I've felt a bit let down by the hospital. Normally I think our hospital and the trust is the bees knees: it's not perfect and there have been several incidents that has annoyed me, but compared to many other people, the Great North Children's Hospital is pretty damn alright. The first thing was that in recovery they didn't have the equipment to attach a syringe to a feeding tube to give pain relief (you need either a certain type of syringe to screw on the cap and sometimes, an extension set). Whilst she had had some level of pain relief in theatre, she was clearly in a lot of pain still and had been written up for further medicine. Unfortunately, she couldn't have it because there was nothing to give it to her and her swallow isn't safe enough to take it orally (which is in her notes and I had told them before she went in. Several times). The second thing was that despite staying overnight and for the best part of the day afterwards, we never actually so much saw let alone spoke to a doctor after the operation. There were plenty about, but as the hospital is split up into lots of departments and specialities, everyone claimed she wasn't "their" patient so wouldn't add to their ward rounds or check in. As it was, she seemed ok, but I would really have appreciated even a junior doctor checking in, doing a quick once over to confirm she was ready for home. I, and nurse in charge, suspected that as strictly speaking we were there under ENT, who operate from the sister hospital on the other side of the city, the fact was no one could be bothered or had time to come back across to do the necessary checks that healing was underway. After 24 hours, Wriggles was struggling to hold down much in the way of food or drink but mainly because she was so distressed by the constant observations the nurses had to carry out. Once she started crying, she couldn't stop before being sick again. In the end, the nurse agreed to discharge us on the basis that we were covered by community nursing and would come back in if things deteriorated. At the point we went home, we should really have stayed in longer but luckily the nurses agreed that seeing if Wriggles calmed down at home to at least keep more feeds (and medication!) down would be better for her and thankfully that was the right choice.
Every time without fail I forget how temperamental her stomach and digestive system is to any change, let alone anaesthesia, so we are still struggling to reintroduce feeds and get them to stay down long enough to start digesting. I keep telling myself that the most important thing is fluids as if we didn't have the tube, it is entirely likely she may not be wanting to eat much at all anyway so it is drinks, drinks, drinks. I thought I'd cracked it last night with a decent overnight feed, and woke up to find the extension to the new feeding button had somehow come off, thus feeding mainly the mattress with formula and not my daughter. That rather set the tone for a fraught morning not helped by the fact the after being royally fiddled about with, Wriggles does not want anyone doing anything to her. Unfortunately as we have changed feeding tubes, the new ones needs an extension clipping on to administer things and Wriggles does not have the understanding that if she is to feel slightly less rubbish, I need to do about 5 seconds of fiddling in order to administer pain relief and a drink so she doesn't dehydrate (side note: thanks a bunch, heatwave for making sure I need to be even more diligent about shoving as much liquids into my child that she doesn't not want to absorb). As understanding and patient and empathetic as I am trying to be, I had a moment where I slightly lost the plot this morning. Leaving Cbeebies to babysit while I had a shower and fired off a pathetically sad email to my best friend helped as did eating an entire pack of chocolate biscuits (it was a very small pack. Ish) and me feeling a bit more human and maternal by the afternoon.
Poorly children are draining. On top of that, I am absolutely terrified about post operative bleeding, which would merit a 999 call and almost certainly a second operation, and every time Wriggles is sick, starts screaming or coughing a lot I am on knife-edge. One big positive (I think) it that her breathing at night is so much quieter; the immediate downside to this is that it is so quiet I find it hard to relax and sleep myself, safe in the knowledge she is still breathing correctly. Nearly 3 years of a child who sleeps like the sound of a very fidgety hedgehog with a blocked nose has made me very reassured by noise and I am not quite used to this new silent model. What didn't help was that in recovery, the surgeons requested 24 hours of apnoea monitoring before discharge. On the ward, the apnoea monitor kept playing up and going off every 5 minutes so everyone got very fed up and turned it off, deciding to rely on the oxygen saturation/heart rate levels instead. I think my mental state would have definitely benefited from the requested apnoea monitoring to give me some reassurance. Even when she was a baby on oxygen, I never seriously thought about having an oxygen or apnoea sensor at home as I thought it would drive me barmy and fuel my anxiety, but for the first time I am wondering the merits.
Onwards and upwards. As I keep saying every half hour to myself!
Wednesday, July 17
Betrayal
01:08
I can't sleep. In two hours I will get up and turn your feed off and swap it for just water.
At 7 o'clock I will get up again and quietly turn that off and administer your morning drugs.
Half an hour later a taxi will come and we will drive to hospital.
At 8 o'clock we will arrive at Ward 8, Surgical Ward.
At 9 o'clock I will hand you over to the surgeons who will put you to sleep. I know you will resist.
At 10 o'clock you will wake; groggy, dazed, confused, hurting, in pain.
It is a relatively minor procedure; adenoidectomy and tonsillectomy, tube change and endoscopy.
I can guarantee you will not see it that way.
Children your age aren't creatures of reason and rationale. You are not built to know about the pros and cons of surgical proceedures.
All you will know and care is that it will hurt. And that I brought you there.
*
I just crept into your room; serenely sleeping and snuffling away. Your perfect face made me feel a clumsy betrayer as I pictured your face contorted in pain and confusion less than 12 hours later.
I'm sorry in advance. So sorry.
Please remember today: the sand, the sea. The sandcastles, Quavers on the beach. Paddling in the North Sea. Throwing rocks at the sea and laughing hysterically as it "ate" them up and growled "thank you very much." Remember the freedom, the rocks, the little pools of water. Remember the sunshine, the standing on the edge of the shore.
I can't sleep. In two hours I will get up and turn your feed off and swap it for just water.
At 7 o'clock I will get up again and quietly turn that off and administer your morning drugs.
Half an hour later a taxi will come and we will drive to hospital.
At 8 o'clock we will arrive at Ward 8, Surgical Ward.
At 9 o'clock I will hand you over to the surgeons who will put you to sleep. I know you will resist.
At 10 o'clock you will wake; groggy, dazed, confused, hurting, in pain.
It is a relatively minor procedure; adenoidectomy and tonsillectomy, tube change and endoscopy.
I can guarantee you will not see it that way.
Children your age aren't creatures of reason and rationale. You are not built to know about the pros and cons of surgical proceedures.
All you will know and care is that it will hurt. And that I brought you there.
*
I just crept into your room; serenely sleeping and snuffling away. Your perfect face made me feel a clumsy betrayer as I pictured your face contorted in pain and confusion less than 12 hours later.
I'm sorry in advance. So sorry.
Please remember today: the sand, the sea. The sandcastles, Quavers on the beach. Paddling in the North Sea. Throwing rocks at the sea and laughing hysterically as it "ate" them up and growled "thank you very much." Remember the freedom, the rocks, the little pools of water. Remember the sunshine, the standing on the edge of the shore.
And I will remember too, and grasp with all my memory to your little giggles that rang through today as I try to comfort your cries that I know will ring through tomorrow.
I'm sorry.
Saturday, July 13
Sorry, Wriggles
Some days I long to see you run off as if in flight, with the crowds of other children.
Some days I long to see you slurp up a drink noisily and blow bubbles through straws.
Some days I long to just go out for lunch with you and order something off the menu for you to eat: with pleasure. No syringes.
Some days I long to hear your voice join the little words you are learning.
Most days I feel at peace with how things are and focused on your abilities.
All days I feel so heartbreakingly proud of you (except maybe, when you are badgering me for Maisy Mouse DVD again).
And some days I feel bone-crushing guilt and sadness that I couldn't "fix" things for you.
That I can't wave a magic wand.
I feel angry we have to rely on so many people and are only adding to that team, to help you achieve what comes so naturally to other people.
When you cry during physio stretches, I am crying with you. I've just learnt to have invisible tears.
If I had a magic answer, I promise you I would have used it.
You are so good; so happy really. So full of beans, so scornful of fear.
So why do I feel so sad and guilty that I have somewhere failed you?
How is it possible to feel so grateful, thankful and elated and simultaneously so muddled, confused and aching for this life you never envisaged to go back to being hidden?
Some days I long to see you slurp up a drink noisily and blow bubbles through straws.
Some days I long to just go out for lunch with you and order something off the menu for you to eat: with pleasure. No syringes.
Some days I long to hear your voice join the little words you are learning.
Most days I feel at peace with how things are and focused on your abilities.
All days I feel so heartbreakingly proud of you (except maybe, when you are badgering me for Maisy Mouse DVD again).
And some days I feel bone-crushing guilt and sadness that I couldn't "fix" things for you.
That I can't wave a magic wand.
I feel angry we have to rely on so many people and are only adding to that team, to help you achieve what comes so naturally to other people.
When you cry during physio stretches, I am crying with you. I've just learnt to have invisible tears.
If I had a magic answer, I promise you I would have used it.
You are so good; so happy really. So full of beans, so scornful of fear.
So why do I feel so sad and guilty that I have somewhere failed you?
How is it possible to feel so grateful, thankful and elated and simultaneously so muddled, confused and aching for this life you never envisaged to go back to being hidden?
Monday, June 24
Being Diagnosed
It is coming up to year since we got an official diagnosis through for Wriggles and has been playing on my mind quite a lot. I rather wish it would go away, but it appears those memories are filed in good and proper to go down in technicolour glory with other important life events. I can recall vivdly walking away from hospital after an outpatients appointment and saying to my mum in a daze "Wriggles has probably got cerebral palsy." And a few weeks later coming home to a nondescript white envelope bearing an NHS post mark, reading it in the bathroom, my heart thudding as I read the final and official paperwork: cerebral palsy. My head spun and I thought I would pass out. That night was the first time I drank anything alcoholic since Wriggles' first Christmas, desperate to slip into a haze and blot it all out. Desperate to keep on remembering my little girl for being her, not for having a damaged brain. The silly thing was that in all honesty, having a label made things easier. I always knew she was at risk of having something long-term and our physiotherapists were never anything but honest and realistic. But somehow the finality of that moment was a blow. In hindsight it was actually rather a start of a new chapter but at the time I would have given anything for it to have been the end; to have instead passed everything with flying colours and leave all the worry, concern and fear behind.
I spent a long time, both consciously and unconsciously bitter that it had taken so long to confirm the "truth". Cross and hurt that so many times I'd been made to feel inferior and a needlessly anxious mother when in actual fact I was grasping at the right straws. Now the emotion is less raw, I think that maybe we were diagnosed at the perfect time, if ever there was one for imparting news a parent never wants to hear.
At 2 years old, she could sit unsupported, pull to stand and cruise a little. She could just about push a wooden truck or walker along and was an expert crawler. She was finally babbling and increasingly demonstrating good understanding. She had firm likes (painting, Noodle the hedgehog) and firm dislikes (food, nurses). Not wildly remarkable but a good benchmark to that she could make progress albeit on her own terms. Now I look back and wonder, had we been diagnosed earlier, would I have coped as well? Arguably yes because there is no choice in it. But I do feel it would have been harder. If she had been diagnosed a year earlier, I wonder if I would have felt quite desperate in querying her abilities and future. At 1 she could not yet sit on her own, crawl or roll and showed very little response to language. Without a lot of milestones to yet go on, how would I have felt, would I have cried more tears, had less hope? By the actual diagnosis, I had a taste of hope and needed answers. Earlier, I think I needed hope more than anything else. If they had left diagnosing any longer then I know I would have been frustrated, angry at the service provision and anxiously allocating blame, probably much on myself. Around the time of knowing, the gap between her peers and her was growing noticeably wider and explanations were getting increasingly flat and half-hearted. If I hadn't had that magic letter by now, the last months of snakes-and-ladders progress would have been at best bewildering and at worst, upsetting. With conditions come studies, answers, prognosises and research.
It hasn't been a walk in the park but equally it hasn't been as scary as maybe I thought. One of the main things is that by addressing it and giving it a name, I feel it has given as a bit of a full stop to nosey questions, pitying stares, quizzical enquiries. And for me, rather than wondering why and when my baby girl might achieve what others around her seemed to be doing every two minutes, it has become even more a badge of pride; that despite a lable, Wriggles can do things. If I could show myself, and Wriggles, on her first birthday what she can do now to look forward to it would have been the best gift. If I could have looked these months into the future upon recieving the diagnostic letter, it would have been additional peace. It looks like our world is made up of baby steps, not big strides. Wriggles is getting there, slwoly, surely, with both hiccups and help along the way. It still hurts when I see children far younger run with abandon around the playground but equally, I used to wonder when the day would come that Wriggles could scale a climbing frame, even with help. I'm coming to realise I will never "forget" she has a disability, that it will not go away and that there are many hurdles to jump in the future. But I also now know that that is just one part of life. Diagnosis is not the same as an expectation, either positively or negatively. It is not a marker of what someone will or won't achieve. Some people say a diagnosis is "just words"-for me, it is so much more than that. It is a key, it is a world come crushing down but also a new world opening up. It shifts the angle of your world, but it won't rip it off the axis. Life keeps turning and keeps happening in the bleakest hours to the most joyful of days. It turns out we were living hand-in-hand it cerebral palsy all the time, just now I know it is there. It will always be; disabilities don't take holidays or annual leave. But it's host has an enormous personality and the brighest smile to overshadow it. And that will leave far more of an impact that two medical words ever could.
I spent a long time, both consciously and unconsciously bitter that it had taken so long to confirm the "truth". Cross and hurt that so many times I'd been made to feel inferior and a needlessly anxious mother when in actual fact I was grasping at the right straws. Now the emotion is less raw, I think that maybe we were diagnosed at the perfect time, if ever there was one for imparting news a parent never wants to hear.
At 2 years old, she could sit unsupported, pull to stand and cruise a little. She could just about push a wooden truck or walker along and was an expert crawler. She was finally babbling and increasingly demonstrating good understanding. She had firm likes (painting, Noodle the hedgehog) and firm dislikes (food, nurses). Not wildly remarkable but a good benchmark to that she could make progress albeit on her own terms. Now I look back and wonder, had we been diagnosed earlier, would I have coped as well? Arguably yes because there is no choice in it. But I do feel it would have been harder. If she had been diagnosed a year earlier, I wonder if I would have felt quite desperate in querying her abilities and future. At 1 she could not yet sit on her own, crawl or roll and showed very little response to language. Without a lot of milestones to yet go on, how would I have felt, would I have cried more tears, had less hope? By the actual diagnosis, I had a taste of hope and needed answers. Earlier, I think I needed hope more than anything else. If they had left diagnosing any longer then I know I would have been frustrated, angry at the service provision and anxiously allocating blame, probably much on myself. Around the time of knowing, the gap between her peers and her was growing noticeably wider and explanations were getting increasingly flat and half-hearted. If I hadn't had that magic letter by now, the last months of snakes-and-ladders progress would have been at best bewildering and at worst, upsetting. With conditions come studies, answers, prognosises and research.
It hasn't been a walk in the park but equally it hasn't been as scary as maybe I thought. One of the main things is that by addressing it and giving it a name, I feel it has given as a bit of a full stop to nosey questions, pitying stares, quizzical enquiries. And for me, rather than wondering why and when my baby girl might achieve what others around her seemed to be doing every two minutes, it has become even more a badge of pride; that despite a lable, Wriggles can do things. If I could show myself, and Wriggles, on her first birthday what she can do now to look forward to it would have been the best gift. If I could have looked these months into the future upon recieving the diagnostic letter, it would have been additional peace. It looks like our world is made up of baby steps, not big strides. Wriggles is getting there, slwoly, surely, with both hiccups and help along the way. It still hurts when I see children far younger run with abandon around the playground but equally, I used to wonder when the day would come that Wriggles could scale a climbing frame, even with help. I'm coming to realise I will never "forget" she has a disability, that it will not go away and that there are many hurdles to jump in the future. But I also now know that that is just one part of life. Diagnosis is not the same as an expectation, either positively or negatively. It is not a marker of what someone will or won't achieve. Some people say a diagnosis is "just words"-for me, it is so much more than that. It is a key, it is a world come crushing down but also a new world opening up. It shifts the angle of your world, but it won't rip it off the axis. Life keeps turning and keeps happening in the bleakest hours to the most joyful of days. It turns out we were living hand-in-hand it cerebral palsy all the time, just now I know it is there. It will always be; disabilities don't take holidays or annual leave. But it's host has an enormous personality and the brighest smile to overshadow it. And that will leave far more of an impact that two medical words ever could.
Saturday, June 22
Tired and Emotional
This week, I prayed for Friday to hurry up.
Not that weekends are generally different to weekends in terms of no extra respite; I've just been done with this week and want a new page, new leaf, new day. Over the past couple of weeks I have been looking into preschools as Wriggles is approaching her 3rd birthday. Once I got over the anxiety of someone else being responsible for her for a few hours a day and the shock of how quick she has grown up, I actually found a setting that I really liked and feel would be really supportive and nurturing for Wriggles. So I put her name down and plop, through the letterbox came confirmation there are two sessions a week for her from late September.
Due to her developmental delay and unpredictable mobility and balance, Wriggles will need support in any setting. Prior to even looking at preschools, I had been reassured she would be funded to have a 1:1 support in a mainstream setting as that is what her needs dictate for her to be thoroughly included and to flourish under. So it was not a nice surprise when I rang up the Early Years team who coordinate support and help with the funding paperwork, to hear they had magically changed their mind. Except Wriggles' needs and development had not magically changed. How about we tried to just 'wing' one session? Not that it was phrased as a question otherwise my answer would have been "how about we, errr, don't?!".
Initially I was too stunned and upset to cobble together some arguments. I spent a few days researching and picking the brains of fellow parents of children with additional needs, friends who were teachers or early years workers and my mother who is a trained SENCO and has been a 1:1 herself in the past to a little boy very similar to Wriggles. Later in the week I rang Early Years back to say I wasn't happy with their 'offer' as I felt it wasn't good enough. Perhaps naively, I thought they were joining our team of professionals to help be Wriggles' advocate, not put spanners in the works and possibly safeguard their own budget. I put my case forward and after a bit of to-ing and fro-ing it was agreed we could apply for 1:1 on both sessions as required and if the funding doesn't come through then she will be deferred until the funding does come through. The parting words from Early Years: "But we'll review again at Christmas for removing support."
She hasn't even started yet and they're talking about removing support?
Not even removing when appropriate?
I must say, it's been an unpleasant kick in the face. We might be back on plan A for the moment, which is a huge relief, but to know that the team we were told was going to work with us, are actively and prematurely contemplating plan B does not make for a relaxing life. I knew anecdotally that it is a sad fact of life, many parents have to fight tooth and nail for their children's welfare but given things have been running relatively smoothly of recent, I had hoped that might not be me. It does not breed trust at all in entrusting my daughter and her needs to other people. Already our paediatrician is recommending one thing only for those in charge of funding to claim he is "overreacting" and out of touch. Last week the majority of the team got together for a TAC (Team Around the Child) meeting which went brilliantly and I left feeling so reassured that finally everyone was on the same page and putting Wriggles first rather than inter-departmental politics, selective listening and budget targets. This partly made the claim from Early Years that support isn't necessary so upsetting-they were there at the meeting and at no point said anything suggesting it or that they disagreed with anything the paediatricans or physiotherapist said. More than anything, it has heightened a feeling of loneliness that no one else is going to fight for my child like I will. I will fight for what I believe is in her best interests until I am exhausted and content with her provision at any stage; I just wish that there was a more compassionate system in place to actively met a child's needs rather than providing wild goose chases and parents having to argue with someone before they get an answer; particularly if the desired end result was available the whole time.
It has been nearly a year since official diagnosis and the whole business of having to point out the bleeding obvious, that my child is developmentally behind others, yet again takes its toll. It is akin to a neon flashing light screeching DID YOU KNOW SHE HAS CEREBRAL PALSY! Much of the time she is Wriggles, just Wriggles, my beloved Wriggles. But times like this have been a sharp reminder that Wriggles she may be, but a Wriggles with a bumpier path than many. Followed by sharp guilt that we have come as far as we have while others have more complexities to deal with and even less access to services. Life is unfair to too many people in this world and I have a horrible feeling that things become more, not less complicated over time.
Thank goodness for the rewards.
Not that weekends are generally different to weekends in terms of no extra respite; I've just been done with this week and want a new page, new leaf, new day. Over the past couple of weeks I have been looking into preschools as Wriggles is approaching her 3rd birthday. Once I got over the anxiety of someone else being responsible for her for a few hours a day and the shock of how quick she has grown up, I actually found a setting that I really liked and feel would be really supportive and nurturing for Wriggles. So I put her name down and plop, through the letterbox came confirmation there are two sessions a week for her from late September.
Due to her developmental delay and unpredictable mobility and balance, Wriggles will need support in any setting. Prior to even looking at preschools, I had been reassured she would be funded to have a 1:1 support in a mainstream setting as that is what her needs dictate for her to be thoroughly included and to flourish under. So it was not a nice surprise when I rang up the Early Years team who coordinate support and help with the funding paperwork, to hear they had magically changed their mind. Except Wriggles' needs and development had not magically changed. How about we tried to just 'wing' one session? Not that it was phrased as a question otherwise my answer would have been "how about we, errr, don't?!".
Initially I was too stunned and upset to cobble together some arguments. I spent a few days researching and picking the brains of fellow parents of children with additional needs, friends who were teachers or early years workers and my mother who is a trained SENCO and has been a 1:1 herself in the past to a little boy very similar to Wriggles. Later in the week I rang Early Years back to say I wasn't happy with their 'offer' as I felt it wasn't good enough. Perhaps naively, I thought they were joining our team of professionals to help be Wriggles' advocate, not put spanners in the works and possibly safeguard their own budget. I put my case forward and after a bit of to-ing and fro-ing it was agreed we could apply for 1:1 on both sessions as required and if the funding doesn't come through then she will be deferred until the funding does come through. The parting words from Early Years: "But we'll review again at Christmas for removing support."
She hasn't even started yet and they're talking about removing support?
Not even removing when appropriate?
I must say, it's been an unpleasant kick in the face. We might be back on plan A for the moment, which is a huge relief, but to know that the team we were told was going to work with us, are actively and prematurely contemplating plan B does not make for a relaxing life. I knew anecdotally that it is a sad fact of life, many parents have to fight tooth and nail for their children's welfare but given things have been running relatively smoothly of recent, I had hoped that might not be me. It does not breed trust at all in entrusting my daughter and her needs to other people. Already our paediatrician is recommending one thing only for those in charge of funding to claim he is "overreacting" and out of touch. Last week the majority of the team got together for a TAC (Team Around the Child) meeting which went brilliantly and I left feeling so reassured that finally everyone was on the same page and putting Wriggles first rather than inter-departmental politics, selective listening and budget targets. This partly made the claim from Early Years that support isn't necessary so upsetting-they were there at the meeting and at no point said anything suggesting it or that they disagreed with anything the paediatricans or physiotherapist said. More than anything, it has heightened a feeling of loneliness that no one else is going to fight for my child like I will. I will fight for what I believe is in her best interests until I am exhausted and content with her provision at any stage; I just wish that there was a more compassionate system in place to actively met a child's needs rather than providing wild goose chases and parents having to argue with someone before they get an answer; particularly if the desired end result was available the whole time.
It has been nearly a year since official diagnosis and the whole business of having to point out the bleeding obvious, that my child is developmentally behind others, yet again takes its toll. It is akin to a neon flashing light screeching DID YOU KNOW SHE HAS CEREBRAL PALSY! Much of the time she is Wriggles, just Wriggles, my beloved Wriggles. But times like this have been a sharp reminder that Wriggles she may be, but a Wriggles with a bumpier path than many. Followed by sharp guilt that we have come as far as we have while others have more complexities to deal with and even less access to services. Life is unfair to too many people in this world and I have a horrible feeling that things become more, not less complicated over time.
Thank goodness for the rewards.
Saturday, June 15
To Wriggles' Father
Unless you live in a cave, you must know today is the day before Father's Day.
Or maybe I just notice it more as a single parent, painfully aware we are missing one half of the parenting team my daughter should have.
Normally I barely register it, so used to it just being Wriggles and I. I am pretty OK with how things are; I've never known anything other than single parenting and it works for us, maybe selfishly but works for me. That is not to say the door is closed, that I have tried to shut you out, shut you up, blot you out. You know where we live, you just don't come knocking. And right now as gifts shops around the UK and the parenting world knows it is the cusp of Father's Day. Call it a commercial ploy, write it off; it doesn't stop it hurting when it rolls around though. Because up and down the country, families, little children, big children, partners of brand new children will be celebrating the man in their lives. And we are missing one; to be honest more than missing you we are missing what we could have had. And a part of me thinks that even if you turn out to be a reformed character in years to come, Father's Day will always be a reminder for me at least of your initial lack of enthusiasm. I hope you step up, truly I do. It makes me feel sick to think my Wriggles might grow up feel ignored, unwanted, not half as special as she is. So I hope you come back for her. I wish you would. Today the world seemed alive with dads. Doting, playful, exasperated, grumbling, adoring dads. Dads there in the thick of them. Some had partners, some were alone. But they were there.
I've just put her to bed. We had a rough bath time after she refluxed and was sick everywhere, crying her eyes out. Exhausted, she fell asleep on my lap as I mindlessly watched The Voice, more listening to her breathing rise and fall than a bunch of hopefuls. Over a hour later as she snored softly and my leg went numb, I softly put her down in her cot. Nearly 3 and she still sleeps deeply like a new baby, fists clenched and face screwed up. All those nights you never saw, the baby years you will never go back. That intimacy of a sleeping child. How did you not want it? Not crave it? My favourite mornings was waking nose-to-nose with a gurgling child, sweaty curls matted on her head. I know you can't always miss what you don't know, but I can't imagine how I wouldn't need that knowing I had a child. My shoulder is now wet with her dribble. I wonder if you'd think that was a bit gross. To me it's a badge of honour.
There is so much I want to ask you but far more so much I am afraid to. In all honesty, I don't think I want to know why you have chosen to withdraw. I am certain it wouldn't make me like you any more. Is it because you're not here, you can't see her and fully experience that love? Is it because you don't understand her disabilities? Is it because you simply never wanted children? Is it because of me, because you didn't love me and therefore don't love your child like you could? All fill me with fear mixed with the unknown it might be none of them. I cannot understand being the one that lives with her, knows her so closely. I can't do anything without thinking of her.
I'm not sure what you'll be doing tomorrow. I wonder if you'll miss her; think of her first thing and last thing. As you see your own father will you wonder what happened to your own fathering? Wriggles is too little I think to understand it all yet. She certainly is not wanting for loving men in her life, thank goodness. That is your loss at this moment in time. The potential for loving divided out between others. Humans are forgiving beings though and love is more complex than we'll ever understand. I know in time if you wanted you could have splodgy hand-printed cards, bent and dog-eared crafty items, hot breathed hugs. But you have to ask; a chosen and deliberate absence deserves nothing.
I will make sure she has a good day tomorrow as always. It will be a strange one. I might have to provide all family roles but it will never be my day. I am not a father. So until you reappear in our lives, her life, it is a day to effectively forget. Just another Sunday.
Or maybe I just notice it more as a single parent, painfully aware we are missing one half of the parenting team my daughter should have.
Normally I barely register it, so used to it just being Wriggles and I. I am pretty OK with how things are; I've never known anything other than single parenting and it works for us, maybe selfishly but works for me. That is not to say the door is closed, that I have tried to shut you out, shut you up, blot you out. You know where we live, you just don't come knocking. And right now as gifts shops around the UK and the parenting world knows it is the cusp of Father's Day. Call it a commercial ploy, write it off; it doesn't stop it hurting when it rolls around though. Because up and down the country, families, little children, big children, partners of brand new children will be celebrating the man in their lives. And we are missing one; to be honest more than missing you we are missing what we could have had. And a part of me thinks that even if you turn out to be a reformed character in years to come, Father's Day will always be a reminder for me at least of your initial lack of enthusiasm. I hope you step up, truly I do. It makes me feel sick to think my Wriggles might grow up feel ignored, unwanted, not half as special as she is. So I hope you come back for her. I wish you would. Today the world seemed alive with dads. Doting, playful, exasperated, grumbling, adoring dads. Dads there in the thick of them. Some had partners, some were alone. But they were there.
I've just put her to bed. We had a rough bath time after she refluxed and was sick everywhere, crying her eyes out. Exhausted, she fell asleep on my lap as I mindlessly watched The Voice, more listening to her breathing rise and fall than a bunch of hopefuls. Over a hour later as she snored softly and my leg went numb, I softly put her down in her cot. Nearly 3 and she still sleeps deeply like a new baby, fists clenched and face screwed up. All those nights you never saw, the baby years you will never go back. That intimacy of a sleeping child. How did you not want it? Not crave it? My favourite mornings was waking nose-to-nose with a gurgling child, sweaty curls matted on her head. I know you can't always miss what you don't know, but I can't imagine how I wouldn't need that knowing I had a child. My shoulder is now wet with her dribble. I wonder if you'd think that was a bit gross. To me it's a badge of honour.
There is so much I want to ask you but far more so much I am afraid to. In all honesty, I don't think I want to know why you have chosen to withdraw. I am certain it wouldn't make me like you any more. Is it because you're not here, you can't see her and fully experience that love? Is it because you don't understand her disabilities? Is it because you simply never wanted children? Is it because of me, because you didn't love me and therefore don't love your child like you could? All fill me with fear mixed with the unknown it might be none of them. I cannot understand being the one that lives with her, knows her so closely. I can't do anything without thinking of her.
I'm not sure what you'll be doing tomorrow. I wonder if you'll miss her; think of her first thing and last thing. As you see your own father will you wonder what happened to your own fathering? Wriggles is too little I think to understand it all yet. She certainly is not wanting for loving men in her life, thank goodness. That is your loss at this moment in time. The potential for loving divided out between others. Humans are forgiving beings though and love is more complex than we'll ever understand. I know in time if you wanted you could have splodgy hand-printed cards, bent and dog-eared crafty items, hot breathed hugs. But you have to ask; a chosen and deliberate absence deserves nothing.
I will make sure she has a good day tomorrow as always. It will be a strange one. I might have to provide all family roles but it will never be my day. I am not a father. So until you reappear in our lives, her life, it is a day to effectively forget. Just another Sunday.
Sunday, June 9
Just Because
This week I've started many posts and not finished them as the words just ran out. There is lots I want to say but much of it is going round and round in my head, unresolved. Lots to think about, lots of distinguish. Lots of conflict about if I am just getting wound up or have a point. For now, here are my favourite little feet belonging to an owner who keeps me going.
Tuesday, June 4
Mixed Start to the Week
Yesterday we had a respiratory follow up at the hospital Outpatients clinic. Although we have been busy with home visits for physio and a short speech and language therapy group, it has been a while mercifully since we were last at hospital. Typically, it had to be the sunniest and nicest day it has been in a long while (...2012?) so we set off early, driven by Wriggles shouting "[S]WIIIIIIIIIIIIIII[NGS]" like a mad child and shrieking if I deviated to do anything ridiculous like locate shoes, brush my teeth or get dressed along the way. To her approval we got on the bus and arrived at Leazes Park which is helpfully opposite the hospital and houses two playgrounds and a rather large lake containing ducks, geese and some enormous swans. I've waxed lyrical before about our playground love, but we really can't get enough of them. Due to her lack of independent mobility, few other places or experiences give her an opportunity to let off steam and energy at her pace. Or indulge her scarily daredevil side.
The appointment was a bit of a let down. I was hoping we'd see either our named consultant who took us under his wing last summer and made the order to place the feeding tube, or either the other senior consultant or SHO who both know Wriggles very well and whose judgement I trust, which is more than I can say for some of the paeds we have come across. Instead we got a new registrar, who was very nice but also very new and said "Ummmmmmmmmmmm..." a lot. In the end, she waited until one of the senior consultants was free to run things past him, which although was reassuring and improvement from some previous appointments, I'd have preferred to wait and have the actual appointment with him to talk things through myself.
The upshot was that until we have the consultation with ENT about removal of tonsils and adenoids, respiratory can't really move on with much as things are currently stable but could be improved. Since the tube was placed, the admissions and chest infections have decreased massively. We have had one queried aspiration admission, one viral admission and otherwise have broken the cycle of hell and managed bugs at home...albeit only just sometimes. Now that side of things seems better controlled, it has become increasingly obvious that reflux flare-ups are very much interconnected to chest health. It is quite common to become quite reliant on salbutomal inhalers during a bad reflux patch and Wriggles quite often acquires a blue tinge around the mouth when refluxing. So her reflux meds have been upped and the ENT department are being chased. Wriggles mouth-breathes a lot and constantly snuffles, which could be a symptom of her over-large tonsils and adenoids at least partially blocking her airways. This could potentially be putting extra pressure on her diaphragm, aggravating the reflux. So hopefully, taking them out will make an improvement. Please. If not, a fundoplication was mentioned again-although we have some bridges to cross before that luckily.
Annoyingly, yet another video fluoroscopy referral has got lost in the system, and until that which will assess how "safe" her swallow is now, we still are a no-fluids-orally zone. By the time we get the VF done, it will have been over a year since Wriggles drank anything and I very much hope our feeding/speech and language therapist comes out the woodwork to help with that as I suspect it will not be easy. She never could drink from anything but a particular teat on a bottle and never thin liquids as she choked, so I do really hope we won't be left alone to learn it all from scratch, especially as a will-be-3 year old is a different kettle of fish to an under 1. After clinic running over an hour late, we then had a nice long wait to pick up new dosage meds from the hospital pharmacy. What a treat.
Frustrated by waiting around, being made to sit in her buggy ("WALK!"...which I wouldn't mind, but she tires after a very minute distance thanks to the cerebral palsy and more common Toddler Syndrome, thus making 100 metres a game of musical buggies) for part of the ride home and life in general, Wriggles resumed her tirade of shouting incomprehensible gibberish non-stop, so once home in desperation I let her torture wash Long-Legged-Mouse who has become the victim for most mischief since Noodle the beloved hedgehog got felt tipped and had to spend the night in the airing cupboard which vexed both Wriggles and no doubt him. In the last week, Long-Legged-Mouse has been attacked with Grandma's blusher, repeatedly drowned and nearly been fed to some giant fish.
I don't know what or whom was wetter; Wriggles, Long-Legged-Mouse, me or the kitchen floor, due to a faulty plug in our water table. All were thoroughly soaked, but it used up a fractious hour and finally removed the traces of makeup from poor Long-Legged-Mouse. I hung her out to dry by her tail (it's a tough life) and filled up a large plastic box with water and bubble bath, stripped off the sopping toddler and let her have an impromptu al fresco "bath" just outside the kitchen door on what I fondly call our balcony. Sceptics might call it the top step of the industrial stairs down to our concrete yard.
To round it off, we kindly treated both our street and the back street of the next one down to my tuneless 'Five Little Ducks' accompanied by my backing-shrieker before Wriggles paraded her bare bottom for all to see. I wish the NHS would provide at least a complementary bubble bath or such for Mouse Washing or such activities needed post-appointments. I can quite empathise with Wriggles that she does get very anxious during them, particularly when they insist on weighing her and checking oxygen levels and thus is a nightmare as she can't quite calm herself properly after them, but it doesn't make looking after her any easier when she just shouts gibber until bedtime as a result. Maybe next time I'll put it in the comments box.
Mental note: request next hospital appointment to fall on a truly rubbish WET day.
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