This time next week it will be all over.
Hopefully.
Or will it?
Probably not.
Leaving aside unavoidable cancellations, this time next week H will be back from surgery on his soft palate and on the ward. People have been asking how I am feeling about it and my honest answer is that I don't know. Haven't a clue. What I am feeling changes so often it is somehow undefinable.
Am I scared? No.
Am I worried? Not really.
What then? I wish I knew.
Since coming back from holiday last Sunday I have felt unsettled. Nothing I could put my finger on exactly, but I found it hard to concentrate or be around people generally. The feeling increased throughout the week, especially in work, until today I started to force myself to be social. I didn't find it this difficult at the weekend, maybe I didn't have the thinking space.
I maintain that I am not scared or worried. H will be wonderfully looked after and will be fine, I know that. The best way I can describe it is a wish that we didn't have to do this any more. I understand how childish that must sound but its true. I wish we didn't have to. Its like a shadow following me around, the regret that H has to go through something else at a time when he is so happy and growing so beautifully. He is happy as he is. His three favourite things in life (eating, sucking his thumb, teething toys) will be severely restricted for the next few weeks. I remember the pain he was in last time, and although I am confident he wont be like that again, I still remember. Although the operation will be over, the recovery will not be. Maybe that is what I am dreading - the recovery.
There is also the guilt. Not just knowing that I am 'consenting' to this pain, but the other guilt I have - knowing that I can't imagine what some families in that hospital are going through. It feels wrong to feel like this about a relatively minor op. But I do.
We have a pre-op appointment by telephone tomorrow, and then I will start making a list of things I need to get. Socks for hands. Calpol. Gin. Caffeine to get me through the next few weeks if he stops sleeping again (what DO they put in anaesthetics these days?) Its one thing being a parental zombie all day, but quite another if you have to work through it.
He'll be ok.
I'll be ok.
We will all be ok.
But its ok not to be ok all the time and today no matter how I try to hide it, today, I'm not ok.
Tuesday, 13 June 2017
Tuesday, 9 May 2017
It takes a village - Cleft Awareness Week
You never know how many people are affected by something until you are. All around the world, people are connected by common experience, putting friends in touch with friends who can give advice or comfort. It's from these connections, these strands of knowledge and empathy running through humanity, that great things can happen. I don't necessarily mean world peace, or the elimination of hunger (although that would be lovely), but people who thought themselves alone in an experience can find that they are not. That someone knows what they are going through, have been through it themselves, and can offer advice on what worked for them, is a powerful thing.
A saying that is often bandied about, usually by politicians trying to prove a point, is that "it takes a village to raise a child". I think that is true, although instead of the advice coming from the local wise woman and village elders, it comes from friends of friends or groups and connections online.
When we first found out about H's cleft, we didn't have a bloody clue. The first thing we both thought was 'hair lip.' That isn't the right phrase for it, but we didn't know. We'd never really heard of anyone having a 'hair lip' except one girl in high school who we'd rather not have thought about.
Except we were wrong. We knew lots of people who had been affected by cleft lip and palate. Maybe not directly or closely, but they were there. A second cousin of mine. 2 students at the school my brother taught at. 1 at the school his girlfriend taught at. 2 in a colleague's family. The granddaughter of a colleague of my mother in law. Suddenly, within a week or two, we had the email addresses or facebook details of half a dozen people who had been there and wanted to help two expectant parents who were scared out of their minds.
The wonderful thing about organisations such as CLAPA is the network of reassurance they supply. The 'cleft community' (for want of a better phrase) are without exception the kindest, most welcoming, least judgmental community online. Everyone is so supportive and there is none of the 'mumsnet-y' judgemental rubbish that seems to accompany every parenting opinion online. You are all awesome. Give yourself a pat on the back.
It is important to celebrate all that we, as a 'village' do right, I think we also need to shout from the rooftops about what we are doing. 1 in 700 births are affected by a cleft.
That's 8 in my village.
836 in my county.
129 in a capacity Wembley Stadium
Even 2 in my place of work.
That is a lot of people and yet, judging by the comments on ITV's 'Benidorm' this week, it's still a very misunderstood condition.
We are all proud of our kids for what they have been through, our kids are bad ass. They are strong and stoic because its all they have known. It's harder for us as parents and families because we know what could have been. We see what our children go through and we need the support because we know it's not like this for every child.
That's where our 'village' comes in.
We need to be the people supporting the new diagnosis. We need to be the people supporting families who aren't as far along the road as we are, but we also need to be the people talking and educating everyone else so that when their friend goes "my baby has been diagnosed with a cleft" they can reply "I know someone who had that, don't be scared. Talk to them"
A saying that is often bandied about, usually by politicians trying to prove a point, is that "it takes a village to raise a child". I think that is true, although instead of the advice coming from the local wise woman and village elders, it comes from friends of friends or groups and connections online.
When we first found out about H's cleft, we didn't have a bloody clue. The first thing we both thought was 'hair lip.' That isn't the right phrase for it, but we didn't know. We'd never really heard of anyone having a 'hair lip' except one girl in high school who we'd rather not have thought about.
Except we were wrong. We knew lots of people who had been affected by cleft lip and palate. Maybe not directly or closely, but they were there. A second cousin of mine. 2 students at the school my brother taught at. 1 at the school his girlfriend taught at. 2 in a colleague's family. The granddaughter of a colleague of my mother in law. Suddenly, within a week or two, we had the email addresses or facebook details of half a dozen people who had been there and wanted to help two expectant parents who were scared out of their minds.
The wonderful thing about organisations such as CLAPA is the network of reassurance they supply. The 'cleft community' (for want of a better phrase) are without exception the kindest, most welcoming, least judgmental community online. Everyone is so supportive and there is none of the 'mumsnet-y' judgemental rubbish that seems to accompany every parenting opinion online. You are all awesome. Give yourself a pat on the back.
It is important to celebrate all that we, as a 'village' do right, I think we also need to shout from the rooftops about what we are doing. 1 in 700 births are affected by a cleft.
That's 8 in my village.
836 in my county.
129 in a capacity Wembley Stadium
Even 2 in my place of work.
That is a lot of people and yet, judging by the comments on ITV's 'Benidorm' this week, it's still a very misunderstood condition.
We are all proud of our kids for what they have been through, our kids are bad ass. They are strong and stoic because its all they have known. It's harder for us as parents and families because we know what could have been. We see what our children go through and we need the support because we know it's not like this for every child.
That's where our 'village' comes in.
We need to be the people supporting the new diagnosis. We need to be the people supporting families who aren't as far along the road as we are, but we also need to be the people talking and educating everyone else so that when their friend goes "my baby has been diagnosed with a cleft" they can reply "I know someone who had that, don't be scared. Talk to them"
Thursday, 23 March 2017
1 Year On
Things may have seemed quite quiet from us since I last posted (shock horror) at the end of January. The truth is, like any family with kids, it's never really quiet. If I can't hear someone singing/shouting/crying then something is very badly wrong and my eldest is up to something he shouldn't be. That's just life. Silence isn't golden anymore - it's suspicious.
There has been a mixture of reasons for the drop in posts. Partly it is because I have returned to work and so am trying to squeeze a days worth of chores and parenting into 2 hours of an evening, but mostly it's because there genuinely isn't much to report. We have a couple of months until H's palate op so I have stopped stressing and am taking things as they come.
The weaning is going really well, he loves his food and we are starting to make things more textured for him. Hes not really into finger food yet, but it's coming. He is still on a bottle but Mr CD and I made the semi conscious decision to give the sippy cups a rest for a few weeks and come back to them when he's a bit more confident. I think we are at that stage now.
So, you may reasonably ask, why is there a post today. Well, I think the title says it all.
The day this post goes up, Thursday 23rd March, marks one year since our cleft diagnosis. One year since my husband, mother in law and I were sat in the tiny scan room and the sonographer said "I think I can see something".
I am writing this two days in advance, so I can't tell you how I feel today. Generally, I am feeling contemplative. We have been very lucky with the advice and support and the care we have had. We are lucky that it is 'just' a cleft. At my brief time at BCH I saw children who were much sicker, whose parents were trying to hide their grief for the pain their child was going through, and that they could do nothing to alleviate it. We are lucky.
But...
The memory of the fear is still there. The memory of the searing pain of not knowing, the anxiety, the sickness. It's all still there, buried deep down. I remember the pain of that Easter weekend more vividly than I remember the pain of labour.
I don't talk about it much because I feel like a fraud. Who am I to still feel these things? H is a happy and healthy little boy. The first operation was a success and I have every confidence the second one will be too. Who the hell am I to still feel sad sometimes.
But I do.
Sometimes I wake up at night gripped with the sickness and fear that kept me awake those first few weeks. I have to remind myself that H is here, that the fear is gone - or at least should be.
I try not to think about the future. About dentists, and speech therapists and more operations. About school and other children and their reaction to my brave little boy, who genuinely only stops smiling to eat. I don't want to think about things I cannot control
A picture that kept me going throughout the pregnancy showed the silhouette of Hagrid, the Hogwarts gamekeeper, with the quote "What's coming will come, and we'll meet it when it does". I try to keep to that as much as I can.
I don't want this to sound maudlin - it's not meant to be. It has taken a lot of thinking and accepting for me to admit that the pain is still there. The fear and anxiety was so much that I think it will take more than a year to recede.
So contemplative it is. I actually think that I will feel it more around Easter because that was what was happening in our family and community while we waited. And waited. And waited. Easter will always be linked with that feeling of pain, uncertainty and fear for me. Even if I don't feel it, I will remember it.
There has been a mixture of reasons for the drop in posts. Partly it is because I have returned to work and so am trying to squeeze a days worth of chores and parenting into 2 hours of an evening, but mostly it's because there genuinely isn't much to report. We have a couple of months until H's palate op so I have stopped stressing and am taking things as they come.
The weaning is going really well, he loves his food and we are starting to make things more textured for him. Hes not really into finger food yet, but it's coming. He is still on a bottle but Mr CD and I made the semi conscious decision to give the sippy cups a rest for a few weeks and come back to them when he's a bit more confident. I think we are at that stage now.
So, you may reasonably ask, why is there a post today. Well, I think the title says it all.
The day this post goes up, Thursday 23rd March, marks one year since our cleft diagnosis. One year since my husband, mother in law and I were sat in the tiny scan room and the sonographer said "I think I can see something".
I am writing this two days in advance, so I can't tell you how I feel today. Generally, I am feeling contemplative. We have been very lucky with the advice and support and the care we have had. We are lucky that it is 'just' a cleft. At my brief time at BCH I saw children who were much sicker, whose parents were trying to hide their grief for the pain their child was going through, and that they could do nothing to alleviate it. We are lucky.
But...
The memory of the fear is still there. The memory of the searing pain of not knowing, the anxiety, the sickness. It's all still there, buried deep down. I remember the pain of that Easter weekend more vividly than I remember the pain of labour.
I don't talk about it much because I feel like a fraud. Who am I to still feel these things? H is a happy and healthy little boy. The first operation was a success and I have every confidence the second one will be too. Who the hell am I to still feel sad sometimes.
But I do.
Sometimes I wake up at night gripped with the sickness and fear that kept me awake those first few weeks. I have to remind myself that H is here, that the fear is gone - or at least should be.
I try not to think about the future. About dentists, and speech therapists and more operations. About school and other children and their reaction to my brave little boy, who genuinely only stops smiling to eat. I don't want to think about things I cannot control
A picture that kept me going throughout the pregnancy showed the silhouette of Hagrid, the Hogwarts gamekeeper, with the quote "What's coming will come, and we'll meet it when it does". I try to keep to that as much as I can.
I don't want this to sound maudlin - it's not meant to be. It has taken a lot of thinking and accepting for me to admit that the pain is still there. The fear and anxiety was so much that I think it will take more than a year to recede.
So contemplative it is. I actually think that I will feel it more around Easter because that was what was happening in our family and community while we waited. And waited. And waited. Easter will always be linked with that feeling of pain, uncertainty and fear for me. Even if I don't feel it, I will remember it.
Saturday, 28 January 2017
Deadlines
“I love deadlines. I love the whooshing noise they make as they go by.” - Douglas Adams
I like a deadline. They give me something to work towards, something to aim for. When I have a deadline I can plan accordingly. I like counting down to things so that I can quantify the time I have left to prepare.
For example I can tell you that its 19 days until I go away with Mr CD. 41 days until I turn 30, 107 days until I go with L to see Harry Potter accompanied by a live orchestra and that its 10 days until H's next appointment at BCH.
 |
| Baby Led Weaning |
Over the last week I have posted some videos to the Facebook page showing me feeding H, and from them I think you can guess the constant swings and roundabouts this had become.
Last weekend went something like this:
Friday: Ate masses of broccoli. Loads of it. Couldn't get enough.
Friday: Ate masses of broccoli. Loads of it. Couldn't get enough.
 |
| Post Raspberry: A cute little ball of fuzz & a rabbit. |
Sunday: Carrots. The old faithful. Not now though - not interested then tried a bit and choked on them.
Monday: Carrots again. Screamed. Apples: 5 spoons then screamed. Then proceeded to sneeze most of those 5 spoonfuls out of his nose.
Since then, he has been eating the purees a lot better. He does seem to prefer the pouches but, at the moment, I am just pleased he is eating. As the purees have been going down better I have been trying him on other things, whole raspberries in a weaning net and porridge for him to play with in a nod to *shudder* baby led weaning. Not too much went on the dog so I'm calling that a win.
No, the puree thing is going okay now. What we are still struggling with is the whole 'milk in a sippy cup' thing. He just isn't interested beyond a few sips. I think our record is 10ml. I can't say I blame him if I'm honest, just the feel of the mouth piece bouncing against his gum notch gives me the shivers - its like grinding teeth.
So, you see my problem. We will go to this appointment and they will ask how the weaning is going and I will shrug my shoulders and say "I have no idea." And as the weaning is integral to his next operation, it makes me nervous. They could turn around and ask to operate within a couple of weeks - I doubt they will but I am an inveterate planner, and not having a fixed deadline is concerning me.
First thing on Monday I will call the cleft team for some advice. We should be further on with the cup than we are for 4 weeks in.
So, that's where we are. I would be interested to hear what free-flow cups you use for weaning and if you are having any more luck.
First thing on Monday I will call the cleft team for some advice. We should be further on with the cup than we are for 4 weeks in.
So, that's where we are. I would be interested to hear what free-flow cups you use for weaning and if you are having any more luck.
Thursday, 5 January 2017
Octopus
Happy New Year!
I have tried to write an update several times over the last few weeks, but have always come to a stuttering halt around the second paragraph. Not being a writer, I can hardly call it writers block so I've gone with bloggers block - although that does have the disadvantage of sounding like a drainage issue.
I think the main reason I have been struggling to write anything is that I have been, to put it mildly, fecking knackered. I don't know what they put in anaesthetics these days but whatever it is did something to H's sleep pattern that I am only now breaking him out of. I'm not a superstitious person, but I did go hug a tree on typing that. Please God let me not have put the clappers on it!
Christmas is always a busy time in our house. Aside from the general merriment of the season it is my elder son's birthday just before new year so he has been doubly excited and Mr CD and I have been doubly busy.
H is now completely healed - a little red but it just looks like he has a cold. His lip has now started to hitch up slightly so we are trying to massage his lip daily to break down the scar tissue. This has turned out to be a lot trickier than I had expected. You need to make small circular motions rubbing down the scar line, pressing firmly. This is all well and good in theory, but the scar is smaller than the finger you are using to rub it so you find your finger falling off the lip before you've done much rubbing at all. Add to that a baby who does NOT want to have his face touched in that way and it's like trying to put a wetsuit on an octopus.
The other big change is that we have started weaning. This is not going so well. We have been trying twice a day and used various food and textures but he still isn't keen. I think he quite likes the food but doesn't like the spoon. I know that sounds mad, but once the food is in his mouth hes quite happy, but when that spoon gets near him its like trying to force a snorkel into the wetsuited octopus's mouth. It doesn't matter what spoon I use, he isn't having any of it. A couple of other parents have suggested 'baby led weaning'. I'll be honest I'm not entirely sure what that is, but the look of horror on my friend's face when she mentioned it means that I know I'm not going to like it. I am seeing our Cleft Nurse next week so I'll talk it through with her.
I am trying not to get too disheartened with the weaning. We've only been trying for a few days and H is only 21 weeks. As much as I believe you shouldn't compare your children, my elder child was so ready to go onto solids at 6 months that he picked it up fairly quickly. I am also aware of time looming. I had aimed to get him pretty much weaned by February half term as his next operation is due around March. I think the 'deadline' is weighing on my mind, even though its a self imposed. Its as much about managing my own expectations as anything else.
Keep an eye on facebook and twitter for weaning updates. I am also now on instagram @Cleft_Diary.
I have tried to write an update several times over the last few weeks, but have always come to a stuttering halt around the second paragraph. Not being a writer, I can hardly call it writers block so I've gone with bloggers block - although that does have the disadvantage of sounding like a drainage issue.
I think the main reason I have been struggling to write anything is that I have been, to put it mildly, fecking knackered. I don't know what they put in anaesthetics these days but whatever it is did something to H's sleep pattern that I am only now breaking him out of. I'm not a superstitious person, but I did go hug a tree on typing that. Please God let me not have put the clappers on it!
Christmas is always a busy time in our house. Aside from the general merriment of the season it is my elder son's birthday just before new year so he has been doubly excited and Mr CD and I have been doubly busy.
H is now completely healed - a little red but it just looks like he has a cold. His lip has now started to hitch up slightly so we are trying to massage his lip daily to break down the scar tissue. This has turned out to be a lot trickier than I had expected. You need to make small circular motions rubbing down the scar line, pressing firmly. This is all well and good in theory, but the scar is smaller than the finger you are using to rub it so you find your finger falling off the lip before you've done much rubbing at all. Add to that a baby who does NOT want to have his face touched in that way and it's like trying to put a wetsuit on an octopus.
The other big change is that we have started weaning. This is not going so well. We have been trying twice a day and used various food and textures but he still isn't keen. I think he quite likes the food but doesn't like the spoon. I know that sounds mad, but once the food is in his mouth hes quite happy, but when that spoon gets near him its like trying to force a snorkel into the wetsuited octopus's mouth. It doesn't matter what spoon I use, he isn't having any of it. A couple of other parents have suggested 'baby led weaning'. I'll be honest I'm not entirely sure what that is, but the look of horror on my friend's face when she mentioned it means that I know I'm not going to like it. I am seeing our Cleft Nurse next week so I'll talk it through with her.
I am trying not to get too disheartened with the weaning. We've only been trying for a few days and H is only 21 weeks. As much as I believe you shouldn't compare your children, my elder child was so ready to go onto solids at 6 months that he picked it up fairly quickly. I am also aware of time looming. I had aimed to get him pretty much weaned by February half term as his next operation is due around March. I think the 'deadline' is weighing on my mind, even though its a self imposed. Its as much about managing my own expectations as anything else.
Keep an eye on facebook and twitter for weaning updates. I am also now on instagram @Cleft_Diary.
Thursday, 8 December 2016
Op + 2
Firstly, a huge thank you to you all for your messages of support and love. I know I have been rubbish in replying to you all, but I have read every single one of them and they have helped immensely.
Since coming home yesterday H has been doing really well. He struggles to eat only if the pain relief is wearing off so we try and work around it. Last night was disturbed but not as bad as the night before. I am hoping tonight will be better still.
Funny thing just happened. I was flipping through my phone and came across a photo of H from a couple of weeks ago. It was only 2 days ago he looked like that, but it was a bit of a shock to see how big the cleft was. I'm not sure why I was shocked, I'm just surprised that I was. I sent the photo to a friend and she, unbidden, said exactly the same thing so I know it's not just me. It's amazing how quickly you forget.
I'll do a full blog about the op day when I get a bit more time. For now though I'm going to try and relax with Mr CD. If you're going to the CLAPA West Midlands Christmas Party on Saturday I hope you have a wonderful time. We can't be there sadly, but will try next year. If you are local to Warwick, Happy Faces is on tomorrow. I'll see you there!
Since coming home yesterday H has been doing really well. He struggles to eat only if the pain relief is wearing off so we try and work around it. Last night was disturbed but not as bad as the night before. I am hoping tonight will be better still.
Funny thing just happened. I was flipping through my phone and came across a photo of H from a couple of weeks ago. It was only 2 days ago he looked like that, but it was a bit of a shock to see how big the cleft was. I'm not sure why I was shocked, I'm just surprised that I was. I sent the photo to a friend and she, unbidden, said exactly the same thing so I know it's not just me. It's amazing how quickly you forget.
I'll do a full blog about the op day when I get a bit more time. For now though I'm going to try and relax with Mr CD. If you're going to the CLAPA West Midlands Christmas Party on Saturday I hope you have a wonderful time. We can't be there sadly, but will try next year. If you are local to Warwick, Happy Faces is on tomorrow. I'll see you there!
Friday, 2 December 2016
Smile
Last weekend was sponsored by Day Nurse and Dettol. Starting on Friday I managed to develop a heavy cold and my eldest spent Sunday battling a horrid sickness bug. This was not what we needed with less than 10 days until the operation. Skip forward to today and things are much better. Thanks to quarantining and liberal quantities of alcohol gel, we seem to have managed to keep H and the bugs separate. If we can keep this up until Tuesday then we will be happy.
Lots of people have been asking me how I am in the run up to the operation, and the honest answer has been 'fine'. I haven't been worried about it, or dreading it. In fact, in a perverse way, I have been slightly looking forward to it. Or if not looking forward to it, looking forward to getting it over with and putting it behind us. Its something we have been talking about for months and it feels like its time has come.
The last couple of days, however, I've had a new feeling. Its hard to explain what the feeling is, only what it isn't. It isn't fear. I am not scared for H, he will be in excellent hands, and although he will be in pain afterwards and that will be horrible he will be given painkillers so he can be comfortable. It's not apprehension, or worry. The closest thing I can get to it is sadness.
I'm sad because I'm going to miss him. Miss him as he is now, with his cleft making his wide smile that much wider. Miss him sticking his tongue through the gap in his gum when he's hungry. I'm going to miss the little boy he is. All babies grow up and change, but they do so gradually. This change will be big and sudden, and I'm not sure I'm ready for it. Then again I'm not sure you are ever ready for your child to change and grow. It tends to happen when you aren't looking.
I know this is for the best, that it needs to be done. I know that the surgeons will do an excellent job and that in a few weeks/months/years you may never know there was a cleft there. But that cleft is part of who H is, and its a part of him I will miss very much. I never thought I would feel this way but I do. I am looking forward to seeing what he will look like, but I will miss him for what he is now more than I can say.
_________________________________________________________________________________
After many conversations with Mr CD we have decided to 'live tweet' the day on the twitter & facebook to give a true account of our experiences on the day. You can follow us on @cleft_diary or https://www.facebook.com/CleftDiary - #HCleftOp
Lots of people have been asking me how I am in the run up to the operation, and the honest answer has been 'fine'. I haven't been worried about it, or dreading it. In fact, in a perverse way, I have been slightly looking forward to it. Or if not looking forward to it, looking forward to getting it over with and putting it behind us. Its something we have been talking about for months and it feels like its time has come.
The last couple of days, however, I've had a new feeling. Its hard to explain what the feeling is, only what it isn't. It isn't fear. I am not scared for H, he will be in excellent hands, and although he will be in pain afterwards and that will be horrible he will be given painkillers so he can be comfortable. It's not apprehension, or worry. The closest thing I can get to it is sadness.
I know this is for the best, that it needs to be done. I know that the surgeons will do an excellent job and that in a few weeks/months/years you may never know there was a cleft there. But that cleft is part of who H is, and its a part of him I will miss very much. I never thought I would feel this way but I do. I am looking forward to seeing what he will look like, but I will miss him for what he is now more than I can say.
_________________________________________________________________________________
After many conversations with Mr CD we have decided to 'live tweet' the day on the twitter & facebook to give a true account of our experiences on the day. You can follow us on @cleft_diary or https://www.facebook.com/CleftDiary - #HCleftOp
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