Friday, December 21
And so it is Christmas....
Yesterday we went to a wnderful Christmas party with Piccolo music. It did not take overly long before half way through Jingle Bells and I was fighting back tears as my daughter stared lovingly at the Gruffalo (sized suspiciously like a 4 year old boy) sat next to us. I am blaming it on a hormones, too many mince pies before 10am and the recent passing of what should have been Wriggles' second birthday if she had had the decency to arrive on time rather than three months early. I can't help it, I try, I've really tried but sometimes I just get caught unawares and it is like an enormous smack in the face remembering everything. It isn't so much a terrible way, it's more a bewilderment that all the hardship has lead us to this moment of joyful normality I never hoped to dream we could take part in.
So many times I have sat. By an incubator. By a cot. By a hospital bed. In the doctors surgery. In A&E. In an ambulance. In intensive care. In clinics, so many clinics. At the child development centre. The hospital canteen. So many tears I have cried, so many nerves I have wrung dry.
And yet.
What have I to show for it?
This.
This beautiful face. This smile. These twinkling eyes. This full-of-beans-zest-for-life-loving this thing. And Christmas really brings it home. It is such a time of hope and joy, not to mention family and celebration. Last Christmas, Wriggles had no mobility and was not even a reliable sitter-upper at over a year old. She may still be yet to walk, talk or eat by herself but the progress she has made in a year is astonishing despite acquiring a diagnosis and tube. As this morning we sang along to our festive CD, she giggled like a lunatic and copied the actions, sometime with prompting and sometimes spontaneously.
It is impossible to erase the past. It happened and really is a huge part of our lives. To some people it may seem like needless torturing yourself but really is it fair to forget? Especially when so many have trodden this path before, many with different outcomes, some happier, some sadder. At this time of year, as much as the celebration it is time to remember the babies who fought but were not so lucky, babies and children who were loved enough for a thousand lives but are not here now. We were so nearly them, more than once and that is why these little moments are all the more special for us.
So many times I have sat. By an incubator. By a cot. By a hospital bed. In the doctors surgery. In A&E. In an ambulance. In intensive care. In clinics, so many clinics. At the child development centre. The hospital canteen. So many tears I have cried, so many nerves I have wrung dry.
And yet.
What have I to show for it?
This.
This beautiful face. This smile. These twinkling eyes. This full-of-beans-zest-for-life-loving this thing. And Christmas really brings it home. It is such a time of hope and joy, not to mention family and celebration. Last Christmas, Wriggles had no mobility and was not even a reliable sitter-upper at over a year old. She may still be yet to walk, talk or eat by herself but the progress she has made in a year is astonishing despite acquiring a diagnosis and tube. As this morning we sang along to our festive CD, she giggled like a lunatic and copied the actions, sometime with prompting and sometimes spontaneously.
It is impossible to erase the past. It happened and really is a huge part of our lives. To some people it may seem like needless torturing yourself but really is it fair to forget? Especially when so many have trodden this path before, many with different outcomes, some happier, some sadder. At this time of year, as much as the celebration it is time to remember the babies who fought but were not so lucky, babies and children who were loved enough for a thousand lives but are not here now. We were so nearly them, more than once and that is why these little moments are all the more special for us.
Wednesday, December 12
49/52 Behold the festive...alpaca?
Now don't get me wrong, I like alpacas. I think. What isn't to like? A silly hair, woolly jumpers produced, not hankering taste for biting small children's fingers... the only umbrage I take with the alpaca, is that they aren't renowned for being festive. And that is where we met them, at a Victorian Christmas Fair. The only Victorian element I could possibly spot was the owner of the Punch and Judy exhibit, but nonetheless it was quite Christmassy and free and full of nice stalls. We had been to a Christmas fair the weekend before and rather excitingly met some real live reindeer. At this one, was a pen with three alpacas. Now , given it was Christmas themed, I cannot recall an alpaca in the Christmas story. Donkey? Yes. Sheep? Yes. Alpaca? Wrong part of the world I think. I wonder if they were aiming for camels but ran out of budget. However, Wriggles was rather keen on the alpacas and tried to throw herself over the fence so I will let them off.
Tuesday, December 11
Hard Work
Did you know, two year olds are hard work?
They are also funny, charming, smart, mischievous, sweet and affectionate*, but I would sum up our experience of being 2 so far as bloody hard work.
This might be the bleeding obvious. We've all heard of the "terrible twos" and know that choices=confusion=stamping our feet. But I've just got to write it down to remind myself. Not that I need reminding (I do own a 2 year old, with a personality so big I may as well own two), but I need reminding it IS the bleeding obvious for a good chunk of the day/week/month/year. Because sometimes it sends me barmy to the point I want to tear my hair out and reach for the Emergency Rum** as soon as 'Numtums' (9am showing) finishes, and it is very easy to forget that there are a lot of similar parents up and down the country all doing exactly the same.
It certainly isn't that I don't love my child. I do, of course I do. I love her every millisecond of the day. In some ways, I am peculiarly grateful she even throws tantrums-I nearly lost her on more than one occasion and her prognosis could be so much more severe that I feel I should celebrate every last scrap of life, foot stomping and all. However, in the rational day-to-day life, I roll my eyes along with the best of them and grit my teeth and count the seconds until bedtime and calm descends onece more. Because there is a simple truth we all know, that we have probably applied to many people throughout our life:
I love you all the time but that doesn't mean I have to like you all the time.
But for some reason, this feels hideous when we apply it to those dearest, our children. Not like our children? Even writing it, the perfectionist in me feels aghast and I feel like squirming, not wanting to admit it. Maybe it's not that simple, it is more fragments of a phase that I don't like rather than a toddler. After all, it is actions performed by an immature boundary-pushing brain that I am perceiving with my adult and emotive-parent brain. But my goodness, it is EXHAUSTING.
I hope know Wriggles isn't on a one girl mission to send me mad. I know she isn't lying awake plotting how to press my buttons (because she is "singing" to her toy Hedgehog and is yet to multi-task). I know all toddlers do this, even the super-nice ones, so it is beyond me that I can't cope better. And then I have to think, yeah me and all the other parents. Because truth be told, even the most serene and kindest of parents with benevolence blossoming around them like a halo, even they get mad and exasperated. Either that, or I have a fabulously lax group of parent-friends.
Not that that always helps when you are in the moment, the zone of toddler-warfare with your entire house emptied upside down around you and refused biscuits crushed into the carpet. But step back for a second (ie. put the kettle on, preferably without small person clamped to your legs) and breathe. I am finding two things helpful to think of whilst waiting for the water to boil at this point. 1. I was this tiring/irritating/incessant/repetitive/stubborn/single-minded once and 2. The only person expecting me to be Mary Poppins is myself; just getting through the day and trying not to loose my rag- that will do for today. And apparently read 5 MILLION BILLION SQUILLION stories and put the teddy in the box-but-not-the-right-box-oh-god-its-the-wrong-box-quick-where's-the-other-bloody-cardboard-box and patiently open and close and open and close and open and close the same door on the advent calendar whilst balancing an 11ish kg weight (otherwise identified as a child).
Would I have it any other way?
Erm.
Probably not.
Maybe a tad less whinging (please).
Same again tomorrow then.....
*some of the time
**I haven't. Yet
They are also funny, charming, smart, mischievous, sweet and affectionate*, but I would sum up our experience of being 2 so far as bloody hard work.
This might be the bleeding obvious. We've all heard of the "terrible twos" and know that choices=confusion=stamping our feet. But I've just got to write it down to remind myself. Not that I need reminding (I do own a 2 year old, with a personality so big I may as well own two), but I need reminding it IS the bleeding obvious for a good chunk of the day/week/month/year. Because sometimes it sends me barmy to the point I want to tear my hair out and reach for the Emergency Rum** as soon as 'Numtums' (9am showing) finishes, and it is very easy to forget that there are a lot of similar parents up and down the country all doing exactly the same.
It certainly isn't that I don't love my child. I do, of course I do. I love her every millisecond of the day. In some ways, I am peculiarly grateful she even throws tantrums-I nearly lost her on more than one occasion and her prognosis could be so much more severe that I feel I should celebrate every last scrap of life, foot stomping and all. However, in the rational day-to-day life, I roll my eyes along with the best of them and grit my teeth and count the seconds until bedtime and calm descends onece more. Because there is a simple truth we all know, that we have probably applied to many people throughout our life:
I love you all the time but that doesn't mean I have to like you all the time.
But for some reason, this feels hideous when we apply it to those dearest, our children. Not like our children? Even writing it, the perfectionist in me feels aghast and I feel like squirming, not wanting to admit it. Maybe it's not that simple, it is more fragments of a phase that I don't like rather than a toddler. After all, it is actions performed by an immature boundary-pushing brain that I am perceiving with my adult and emotive-parent brain. But my goodness, it is EXHAUSTING.
I
Not that that always helps when you are in the moment, the zone of toddler-warfare with your entire house emptied upside down around you and refused biscuits crushed into the carpet. But step back for a second (ie. put the kettle on, preferably without small person clamped to your legs) and breathe. I am finding two things helpful to think of whilst waiting for the water to boil at this point. 1. I was this tiring/irritating/incessant/repetitive/stubborn/single-minded once and 2. The only person expecting me to be Mary Poppins is myself; just getting through the day and trying not to loose my rag- that will do for today. And apparently read 5 MILLION BILLION SQUILLION stories and put the teddy in the box-but-not-the-right-box-oh-god-its-the-wrong-box-quick-where's-the-other-bloody-cardboard-box and patiently open and close and open and close and open and close the same door on the advent calendar whilst balancing an 11ish kg weight (otherwise identified as a child).
Would I have it any other way?
Erm.
Probably not.
Maybe a tad less whinging (please).
Same again tomorrow then.....
*some of the time
**I haven't. Yet
Tuesday, November 27
Grubs (not) up
The trouble is, when you actively try and make food not an issue, you do that very thing and it somewhere-subconsciously or just like a giant klaxon-becomes a bloody great issue. Anything who can sit with a child who recurrently refuses all morsels, offered or pilfered, and not be affected by it even a little bit can in my opinion get a knighthood, sainthood and any-other-glowing-hood they wish.
It is EXHAUSTING.
I try, I really try to not let it get to me. After all, Wriggles has a g-tube so she has all nutritional requirements going straight where they need to, but nonetheless feeding is the very cornerstone of life. And I hate that she won't eat. Still. At 27 months, on the cusp of age 2 corrected, she is still yet to contribute to her daily needs of nutrients or calories.
This all sounds very harsh on her. I'm not disappointed in her, more feeling defeated by the situation. Orally aversive children, or recovering orally aversive children are hard work-and I mean that in the nicest of ways. I love my daughter, I think she is the bees knees, but feeding is bloody tiring, physically, mentally and emotionally it is nothing short of demoralising. I wish it wasn't, and however lightly I whip away plates and "never mind, we'll try again tomorrow!" and think of ingenious ways to get her to relax around food, inside a little bit of me is just in pieces. Because something so basic has become such a hill to climb.
We do have good phases where we can make progress. for instance, she will now touch food even when in a bad phase. She will try and steal food off other people and plates, rather than recoil. She can chew some things and move food around in her mouth before swallowing it. Her gag reflex is nowhere near as prominent as before. She will happily play with cutlery, plates, bowls and cups. She enjoys messy play with food (far more than putting it in her mouth!) and we also play with toy food. So definite progress. At the start of this journey, she would not be near food or cutlery, she could barely swallow without gagging and vomiting, she would not tolerate having food placed on her and for a very long time, the only food we had any success with was yogurt. Up and until well after her first birthday, between her childminder and myself, I think we tried every brand of yogurt, fromage frais, mousse and dessert-pots to try and tempt her. Some went in, a lot didn't. When we are going through bad patches, like now, I have to remind myself of how far she has come really. Yes the journey is very long, but we have done not too shabbily so far. When tube feeding was first mentioned I was horrified, but it actually has helped.
It's just, try as I might, I can't stop myself from wishing we were further on. I know, as an adult without problems, there is so much joy to be had from food. It pains me when I see her batting away spoons, hiding from meals, kicking off in a completely uncharacteristic and exaggerated way, crumbling things to the floor, throwing food and spitting things out that do manage to go in. I am proud as punch when she does touch, taste, lick, or eat something even the smallest amount. I just really wish it was more often. Little breakthroughs are like blinding light in a dark world, I am dancing on the ceiling.
One thing I find hard is that it doesn't sit well with me, this wishing some things were different. Rational-me knows I am not trying to swap her; that this is not some trivial issue I am trying to mould her into; that it does not affect my love for her or my overall parenting. I don't resent her, I'm not angry with her. If anything, I get cross with myself. How did it get to this point? I go over and over in my mind the past. What if I had done that differently, or this differently? Did I not try hard enough? Was it because her reflux took so long to be controlled-should I have stamped my feet louder? Is it her prematurity-why didn't I keep her safer for longer? Was it down to the intensive care experience-should I have kept her solely in the house for longer? I know none of these things I can change. I know I'm not perfect, but I did try at every point. Maybe some things I could have done better-hindsight is marvellous and we can all be guilty of looking with rose coloured glasses at the past and judging the future by it.
So for now, g-tube it's you, me and Wriggles. I know now that her behaviour goes in cycles and we will eventually hit a good patch and build things up again. I know too that in time I will hopefully be able to let go both of this idea of "normality" and also at internal guilt. I just bloody can't wait to get somewhere near there. And not see another Quaver ever ever again.
It is EXHAUSTING.
I try, I really try to not let it get to me. After all, Wriggles has a g-tube so she has all nutritional requirements going straight where they need to, but nonetheless feeding is the very cornerstone of life. And I hate that she won't eat. Still. At 27 months, on the cusp of age 2 corrected, she is still yet to contribute to her daily needs of nutrients or calories.
This all sounds very harsh on her. I'm not disappointed in her, more feeling defeated by the situation. Orally aversive children, or recovering orally aversive children are hard work-and I mean that in the nicest of ways. I love my daughter, I think she is the bees knees, but feeding is bloody tiring, physically, mentally and emotionally it is nothing short of demoralising. I wish it wasn't, and however lightly I whip away plates and "never mind, we'll try again tomorrow!" and think of ingenious ways to get her to relax around food, inside a little bit of me is just in pieces. Because something so basic has become such a hill to climb.
We do have good phases where we can make progress. for instance, she will now touch food even when in a bad phase. She will try and steal food off other people and plates, rather than recoil. She can chew some things and move food around in her mouth before swallowing it. Her gag reflex is nowhere near as prominent as before. She will happily play with cutlery, plates, bowls and cups. She enjoys messy play with food (far more than putting it in her mouth!) and we also play with toy food. So definite progress. At the start of this journey, she would not be near food or cutlery, she could barely swallow without gagging and vomiting, she would not tolerate having food placed on her and for a very long time, the only food we had any success with was yogurt. Up and until well after her first birthday, between her childminder and myself, I think we tried every brand of yogurt, fromage frais, mousse and dessert-pots to try and tempt her. Some went in, a lot didn't. When we are going through bad patches, like now, I have to remind myself of how far she has come really. Yes the journey is very long, but we have done not too shabbily so far. When tube feeding was first mentioned I was horrified, but it actually has helped.
It's just, try as I might, I can't stop myself from wishing we were further on. I know, as an adult without problems, there is so much joy to be had from food. It pains me when I see her batting away spoons, hiding from meals, kicking off in a completely uncharacteristic and exaggerated way, crumbling things to the floor, throwing food and spitting things out that do manage to go in. I am proud as punch when she does touch, taste, lick, or eat something even the smallest amount. I just really wish it was more often. Little breakthroughs are like blinding light in a dark world, I am dancing on the ceiling.
One thing I find hard is that it doesn't sit well with me, this wishing some things were different. Rational-me knows I am not trying to swap her; that this is not some trivial issue I am trying to mould her into; that it does not affect my love for her or my overall parenting. I don't resent her, I'm not angry with her. If anything, I get cross with myself. How did it get to this point? I go over and over in my mind the past. What if I had done that differently, or this differently? Did I not try hard enough? Was it because her reflux took so long to be controlled-should I have stamped my feet louder? Is it her prematurity-why didn't I keep her safer for longer? Was it down to the intensive care experience-should I have kept her solely in the house for longer? I know none of these things I can change. I know I'm not perfect, but I did try at every point. Maybe some things I could have done better-hindsight is marvellous and we can all be guilty of looking with rose coloured glasses at the past and judging the future by it.
So for now, g-tube it's you, me and Wriggles. I know now that her behaviour goes in cycles and we will eventually hit a good patch and build things up again. I know too that in time I will hopefully be able to let go both of this idea of "normality" and also at internal guilt. I just bloody can't wait to get somewhere near there. And not see another Quaver ever ever again.
Sunday, November 25
Monday, November 19
Brick Wall (insert head here)
Today, we had our rescheduled MRI appointment after the last one (or two; I have lost count) were cancelled due to Wriggles being yet again too poorly. Over the weekend we have been seeing off a cold, but today she seemed much better and her numbers were all good so it looked all set to finally happen.
The only thing I had reservations about was it being done under sedative. We don't have a lot of experience with them, but the two or three times that we have ran into them, I know that it takes a lot to knock Wriggles out. Say, a general anaesthetic. In light of this, I mentioned it on multiple times leading up to today to a multitude of people who all nodded along. I also mentioned it today to those looking after us on the ward, the doctor in charge of liaising with the MRI team and anaesthetist if needed and the MRI department. Oh, it'll be fine they all said. We can give her two doses and nothing gets past that! they laughed. Ha ha ha.
So that is what they did. We took a heavy-eyed Wriggles up, popped some earphones on her to protect her ears, clipped a probe on her and turned the MRI on. Which is roughly where the trouble started. It soon became apparent, as I had suggested, that although she might be slightly sedated, she was nowhere near enough sedated to withstand an MRI safely and come out with effective data at the other end. Despite the fact she remained unconscious, she kicked, jerked, arched, screamed and threw herself around. In fact, if the nurse on-hand had not told anyone otherwise, both the MRI team and I would have thought she was fitting, not just fighting the sedative as she was. Even though I was assured it was just that, it was really distressing to watch and trying and comfort her (or even hold her, such was she lashing out and flinging herself around) so goodness knows how it was for her. It really shook me seeing her like it, especially as it continued once we were well clear of the MRI room and back safely on a bed heading back to the day unit. The parting words of the team were "I don't think a sedative is going to do the trick, why not mention a general anaesthetic next time?"
Luckily there wasn't a brick wall nearby to hit my head against or I would have. Several times.
Back on the ward, it took hours to get her to wake up. And even now, nearly ten hours since the dose was given she is clearly still half-under the effects and is too floppy to support herself. It is a shame that it didn't work on a stronger level in half the time! So a funny day all round. And not one I am laughing about. Since the summer when they started taking us seriously and actually noting things down and getting things done, they have been a lot better about listening. I just wish they had this time. I do see they had to try, rather than just steam-roller in with a general anaesthetic if not needed, but at the end of the day, I am my daughter's advocate and protector, and she has been put through a stressful day, a powerful drug (that worked in some ways too well and someways nowhere near well enough) and as she has very limited communication, I don't know how traumatic it was for her and if that will influence things to come. Hopefully because she was only semi-conscious it will seem like a bad dream, but either way it is not helping to make hospital visits easier.
Since the summer admission and the advent of tube-feeding, Wriggles' relationship to and with the hospital has changed. She has always been quite compliant and even when very poorly, cheered to see the nurses who all recognise her. Now, she is terrified of many people and bits of the building she recognises. Whereas before she would be transfixed by sats monitors and thermometers, she is now scared stiff and screams if someone goes near her with a blood pressure cuff-probably the least painful thing! Since the end of July, there has barely been two weeks between visits, be they admissions, clinics, routine check ups or scheduled tests. We have been there a lot. After tomorrow's sleep study (round 3), hopefully it will be a lot longer between visits but it is still going to be somewhere we will spend a chunk of time and we now have another attempt at an MRI to schedule in.
One thing I worry about is that it will make her resent me, the amount I have to drag her (for good reason) to the hospital and subject her to the uncomfortable, the unpleasant and the downright horrible procedures. She isn't yet at the age to understand the reasoning behind going; far less health problems and some medical practises an adult has trouble grasping. All she knows is that I take her there and it is not nice. I often wonder if she will carry any of these early memories or a subconscious level of trauma or knowledge from it all, especially the longer this hospital-heavy period goes on and her awareness and understanding grows. Whereas in the earlier days she was a little baby who could be pacified, she is now a growing toddler and developing more complex feelings and perceptions everyday. Just because she herself has little speech, you only have to listen to some of her peers' expressions to realise the amount that toddlers do take in, and even if not grasp, process. I am so proud of how brave she is, but in the same breadth I worry that bravery pays a price.
So many people say in years to come, we will all sit down and laugh about it. I hope they are right, because right now laughing is the last thing on my mind and I'm pretty sure I can speak for my daughter on that subject too.
The only thing I had reservations about was it being done under sedative. We don't have a lot of experience with them, but the two or three times that we have ran into them, I know that it takes a lot to knock Wriggles out. Say, a general anaesthetic. In light of this, I mentioned it on multiple times leading up to today to a multitude of people who all nodded along. I also mentioned it today to those looking after us on the ward, the doctor in charge of liaising with the MRI team and anaesthetist if needed and the MRI department. Oh, it'll be fine they all said. We can give her two doses and nothing gets past that! they laughed. Ha ha ha.
So that is what they did. We took a heavy-eyed Wriggles up, popped some earphones on her to protect her ears, clipped a probe on her and turned the MRI on. Which is roughly where the trouble started. It soon became apparent, as I had suggested, that although she might be slightly sedated, she was nowhere near enough sedated to withstand an MRI safely and come out with effective data at the other end. Despite the fact she remained unconscious, she kicked, jerked, arched, screamed and threw herself around. In fact, if the nurse on-hand had not told anyone otherwise, both the MRI team and I would have thought she was fitting, not just fighting the sedative as she was. Even though I was assured it was just that, it was really distressing to watch and trying and comfort her (or even hold her, such was she lashing out and flinging herself around) so goodness knows how it was for her. It really shook me seeing her like it, especially as it continued once we were well clear of the MRI room and back safely on a bed heading back to the day unit. The parting words of the team were "I don't think a sedative is going to do the trick, why not mention a general anaesthetic next time?"
Luckily there wasn't a brick wall nearby to hit my head against or I would have. Several times.
Back on the ward, it took hours to get her to wake up. And even now, nearly ten hours since the dose was given she is clearly still half-under the effects and is too floppy to support herself. It is a shame that it didn't work on a stronger level in half the time! So a funny day all round. And not one I am laughing about. Since the summer when they started taking us seriously and actually noting things down and getting things done, they have been a lot better about listening. I just wish they had this time. I do see they had to try, rather than just steam-roller in with a general anaesthetic if not needed, but at the end of the day, I am my daughter's advocate and protector, and she has been put through a stressful day, a powerful drug (that worked in some ways too well and someways nowhere near well enough) and as she has very limited communication, I don't know how traumatic it was for her and if that will influence things to come. Hopefully because she was only semi-conscious it will seem like a bad dream, but either way it is not helping to make hospital visits easier.
Since the summer admission and the advent of tube-feeding, Wriggles' relationship to and with the hospital has changed. She has always been quite compliant and even when very poorly, cheered to see the nurses who all recognise her. Now, she is terrified of many people and bits of the building she recognises. Whereas before she would be transfixed by sats monitors and thermometers, she is now scared stiff and screams if someone goes near her with a blood pressure cuff-probably the least painful thing! Since the end of July, there has barely been two weeks between visits, be they admissions, clinics, routine check ups or scheduled tests. We have been there a lot. After tomorrow's sleep study (round 3), hopefully it will be a lot longer between visits but it is still going to be somewhere we will spend a chunk of time and we now have another attempt at an MRI to schedule in.
One thing I worry about is that it will make her resent me, the amount I have to drag her (for good reason) to the hospital and subject her to the uncomfortable, the unpleasant and the downright horrible procedures. She isn't yet at the age to understand the reasoning behind going; far less health problems and some medical practises an adult has trouble grasping. All she knows is that I take her there and it is not nice. I often wonder if she will carry any of these early memories or a subconscious level of trauma or knowledge from it all, especially the longer this hospital-heavy period goes on and her awareness and understanding grows. Whereas in the earlier days she was a little baby who could be pacified, she is now a growing toddler and developing more complex feelings and perceptions everyday. Just because she herself has little speech, you only have to listen to some of her peers' expressions to realise the amount that toddlers do take in, and even if not grasp, process. I am so proud of how brave she is, but in the same breadth I worry that bravery pays a price.
So many people say in years to come, we will all sit down and laugh about it. I hope they are right, because right now laughing is the last thing on my mind and I'm pretty sure I can speak for my daughter on that subject too.
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