Due warning: this is not an easy post to write and is not likely to be an easy post to read - but its what's been in my head - so its coming out - it has taken me three weeks to get to this... This was brought up in my mind by one of the things I look at and it got me to thinking.
When E's Mum was pregnant with C, we had that conversation while we were awaiting the result from the nuchal scan, which is used to screen for Downs Syndrome. Any expectant parent is excited by the early scans, but that one held a real sense of dread for us - what if they told us the news we just didn't want. Well, we had talked and talked and talked and both of us had decided that we would accept the news and work out how life would change and roll our sleeves up and deal with it - but that it would likely mean we would stick with one.
So, fast forward a couple of years and C is a mad little toddler, who has come out from his little infant ailments and is strong, healthy and so very much a boy! E's Mum is now pregnant with E and we find ourselves having the same conversation - and the conclusion is pretty much the same - why wouldn't it be? It was the decision we came to the first time - and we didn't need to use it, so decision remained the same.
Now don't get me wrong, there is little chance of scanning happening for Williams Syndrome - it affects 1 in 20,000 approx and beyond that, i am not certain anyone has ever been able to determine an easily detectable test for it in utero. However, E had extra scans focussing on the heart due to a variety of issues i had. Perhaps they may have been able to tell that there was something not quite right with his ticker? So, what if they had been able to, what if they had said, "E's mum and Dad, E has Williams Syndrome".
Well, I don't think it would have changed a thing. We had had the discussion first time round. If I'm honest, i think second time we had the talk without really thinking it would come to that (how wrong we were). It would have allowed us to prepare, it would have allowed us to work out how bad things might be. BUT, the bottom line is that we had both signed up, when it was the specific test they routinely undertake, to play the hand we're dealt.
I do not truly believe you can know what you would do in that instant, unless you are in it. Genuinely. To a certain extent we have been put in it - we were told by E's Dr, and it felt like that moment - i never want to forget how it felt when we drove home in silence, flopped on the sofa and started googling like mad. I don't want to forget because I will then never know how far i have come from my lowest ebb. We had no choice, we had no time, we had a piece of news which changed our lives and our plan for our family in an instant.But, what we did have was an 8 week old baby who needed a bottle, a nappy change and a cuddle every now and then (oh and he had something called Williams Syndrome). We had E. E was E. He had this little character, not much but he had it.
What all of this taught me, is that you can never know what someone felt when they made a decision - and what I feel may be very different to what anyone else may feel. Some of my more held beliefs remain in me - but i never think too much about other people's decisions anymore - they have their reasons and I don't believe i have the right to consider them as anything but just that. This has been written for me to remind myself of this exact sentiment!
Wednesday, February 22, 2012
Thursday, February 9, 2012
Fundraising Focuses
While I work on a couple of posts, which are going to take a bit of emotional energy, I thought I would share some of the stuff I posted on FB when I was fundraising for the Stroud Half Marathon last year. I decided to focus on some of the aspects of Williams Syndrome (positive and negative) and looking back on it, it was probably what I was doing instead of this in my quest for self counselling. I have recorded them here, in order that I can look back on the things that I was learning in the early days of knowing about E. Re reading some of them makes me realise I must have been looking at it in a positive light as I was picking out things I thought people would educate and challenge people. Well here they are - but I'll be moving on for my next post and be back to the internal. Hopefully have a job update by then too:
This weeks comment is brought to you courtesy of Stephen Fry and his recent series "Fry's Planet Word". I watched the first episode last night and Mr Fry was explaining how the difference between humans and chimps in terms of speech comes from very slight differences in Chromosome 7 - this caught my attention as chromosome 7 is where a micro deletion causes Williams Syndrome. One of the symptoms of Williams syndrome is a strange change in linguistic capability. Williams people often start speaking late, but they make up for lost time, catching up with and sometimes surpassing their peers in ability. However, while their speech is strong, their understanding of what they are capable of saying is not. This hit home, when in conclusion to episode 1, Mr Fry went back to a family home where there was a two year old girl. He explained that she was speaking in sentences and learning words all the time, but that she understood more than she had yet learned to say. I was left thinking of the 25 genes that are missing from E's make up (from Chromosome 7) and how they have turned that completely around and that he is likely to be able to say far more than he is capable of understanding - a fact that could affect his education, potential work and social aspects of his life greatly.
An easily visible symptom of Williams Syndrome is the unique set of facial features that come with it. They are described as Elfin looks - and generally show a slightly larger forehead but very narrow face below the cheeks. Many Williams people suffer dental problems which become a large part of what people see. But what they have to contend with is balanced by a smile that is nothing but addictive and infectious - E can already make me smile on my worst days just by giving me a grin. I think ear to ear smile was written about a Williams kid somewhere.
Williams people are often found to be highly sensitive to sound. This is caused by an unusual enlarging of parts of the inner working of the ear. It is possible that E and other Williams children will need to wear ear defenders during every day activity to protect a very delicate part of their body. This can cause a great deal of distraction and discomfort at times. However, many Williams people are very interested/talented in music and indeed the enlarging of the areas of the ear is often also seen in professional musicians. This shows the positive balance which comes from some of the difficulties which Williams people have to contend with. Spotify gets a work out keeping music playing in the house right now!
This weeks comment is brought to you courtesy of Stephen Fry and his recent series "Fry's Planet Word". I watched the first episode last night and Mr Fry was explaining how the difference between humans and chimps in terms of speech comes from very slight differences in Chromosome 7 - this caught my attention as chromosome 7 is where a micro deletion causes Williams Syndrome. One of the symptoms of Williams syndrome is a strange change in linguistic capability. Williams people often start speaking late, but they make up for lost time, catching up with and sometimes surpassing their peers in ability. However, while their speech is strong, their understanding of what they are capable of saying is not. This hit home, when in conclusion to episode 1, Mr Fry went back to a family home where there was a two year old girl. He explained that she was speaking in sentences and learning words all the time, but that she understood more than she had yet learned to say. I was left thinking of the 25 genes that are missing from E's make up (from Chromosome 7) and how they have turned that completely around and that he is likely to be able to say far more than he is capable of understanding - a fact that could affect his education, potential work and social aspects of his life greatly.
An easily visible symptom of Williams Syndrome is the unique set of facial features that come with it. They are described as Elfin looks - and generally show a slightly larger forehead but very narrow face below the cheeks. Many Williams people suffer dental problems which become a large part of what people see. But what they have to contend with is balanced by a smile that is nothing but addictive and infectious - E can already make me smile on my worst days just by giving me a grin. I think ear to ear smile was written about a Williams kid somewhere.
Williams people are often found to be highly sensitive to sound. This is caused by an unusual enlarging of parts of the inner working of the ear. It is possible that E and other Williams children will need to wear ear defenders during every day activity to protect a very delicate part of their body. This can cause a great deal of distraction and discomfort at times. However, many Williams people are very interested/talented in music and indeed the enlarging of the areas of the ear is often also seen in professional musicians. This shows the positive balance which comes from some of the difficulties which Williams people have to contend with. Spotify gets a work out keeping music playing in the house right now!
I will be doing a little bit of work on the page soon to properly set up the media links,and to the basic information page - start making this more of a resource for those that come on in and want to learn a little more. It would appear that since E's Mum started a blog, I have a few visitors. Glad to have you all, but please forgive the predominantly internal nature of what I write.
Wednesday, February 1, 2012
How Far Will I Go - Apply for a New Job?
E's condition has made me wonder just how far I would go to in pursuit of doing all I can for him. Recently, an opportunity came up which would test that directly - a job opportunity. Without going in to too much detail, this job opportunity is an area I had been thinking about in terms of Williams people and their vulnerability in the world. So what do I do?
I have done the same thing for a living in one guise or another for 13 years (since I entered full time permanent employment). It's what I know, and I even get some satisfaction out of it. Don't get me wrong, it is not perfect and I have my issues with it - but its what I do!
Well I have prepared my application, I have written against all of the competencies and entry criteria and I have bought it home to review it. It is my intention, tomorrow, to send the application off and then to wait until the 8th for shortlisting. Honestly, I do not hold out much hope for my chances of this, a major confidence issue when it comes to job applications coming out there. But, I will apply and I will hope. I would love to get the job - I already have so many ideas for it. In fact I have so many ideas that while I may not have the job, I will bring my ideas to fruition in one way or another - although it may miss the wider audience available with the job.
So, wish me luck, cross your fingers, do whatever you do when someone wants some positive vibes - I really want this job - and that is how far a Dad on a journey into the unknown will go!
P.S. I would like to note that I also want to do as much as I can for C - however, I understand that the two are very different things.
Saturday, January 28, 2012
New Year's Resolution
Yes, yes, I know, I'm running a bit late - or I'm claiming Chinese citizenship/ancestry and then I'm bang on! As with most things these days - my plans seem to be curtailed with one C & E related activity or another. Christmas, New Year and a child's birthday basically make the end of one year and the start of the next a busy old time - and I generally forgive myself for some tardiness.
So, back to the business of the day, that resolution. I have caught myself countless times since W-Day (July 8th), planning for the future. This has ranged from sorting childcare - I started looking at various options in September, despite E's mum not returning to work until January - through to making enquiries about building work we may be able to do to the house in order to provide for E's future, probably living with us. It has even gone through to looking at a property becoming available at the back of our house - a flat. Perfect location if he is able to live semi-independently.
Let me remind you (by you I mean myself), E is 9 months old. I am planning for major building works and possible property purchase for a 9 month old baby - I do believe I need a reality check!
So lately I have been thinking (as per usual, about the future) and the conclusion I have come to is that the future is a long time and no mater how far we get through it, there is always more waiting. I began to wonder what am I missing out on in the here and now - what might I regret allowing to pass me? So my New Year Resolution (Chinese or otherwise) is to live more for the here and now - and by that I do not just mean in an appointment attending care ensuring capacity. I mean in a roll on the floor, pull silly faces, get covered in slobber, have my fingers chewed, etc, etc capacity.
I'll let you know how I go - but the new way sounds a lot less stressful!
So, back to the business of the day, that resolution. I have caught myself countless times since W-Day (July 8th), planning for the future. This has ranged from sorting childcare - I started looking at various options in September, despite E's mum not returning to work until January - through to making enquiries about building work we may be able to do to the house in order to provide for E's future, probably living with us. It has even gone through to looking at a property becoming available at the back of our house - a flat. Perfect location if he is able to live semi-independently.
Let me remind you (by you I mean myself), E is 9 months old. I am planning for major building works and possible property purchase for a 9 month old baby - I do believe I need a reality check!
So lately I have been thinking (as per usual, about the future) and the conclusion I have come to is that the future is a long time and no mater how far we get through it, there is always more waiting. I began to wonder what am I missing out on in the here and now - what might I regret allowing to pass me? So my New Year Resolution (Chinese or otherwise) is to live more for the here and now - and by that I do not just mean in an appointment attending care ensuring capacity. I mean in a roll on the floor, pull silly faces, get covered in slobber, have my fingers chewed, etc, etc capacity.
I'll let you know how I go - but the new way sounds a lot less stressful!
Friday, January 27, 2012
A Forgotten Point of Order
When i was writing my 8th of December post something happened which led to an abandoned draft... i was found out! E's mum came downstairs when she had gone to bed and not thinking about my actions, i shut the laptop a little too quickly.
This led to E's mum floating and being quite suspicious. I decided divorce was a high price to pay to keep my little secret, so showed her. She read the whole thing and gave me very positive noises. I considered stopping it,but thought someone read it and seemed to like what i had written - even if he had a vested interest in the case. I thought longer, and begun to wonder what this cold be one day. While right now it is an internal dialogue and what is on my mind, one day it will represent my entire journey with the whole Williams Syndrome thing.
So i have my second member and this made me think about when I might publicise the fact I have been doing this. I didn't think too long before forgetting all about it. That was until E's Mum recently started a blog of her own and looked in to traffic and things. So I looked at mine - never thought abut it - never expected it - I have never told anyone about it. However, I have been viewed, a lot - USA, New Zealand, Russia and Germany. I'm amazed - truly amazed - spurred on, I have decided to tell people on E's 1st birthday. This is still for me and will remain that way until I feel that what I have to say can be deliberately aimed to help someone else. If in the mean time it helps someone, or someone finds it interesting, I'm glad - and I think I'd even like to hear about it.
Two posts in a week - maybe I'm really getting in to this - I've certainly been thinking more about things I'd like to get off my chest or talk about on here - hopefully you'll see some of them soon.
Cheerio for today world...
This led to E's mum floating and being quite suspicious. I decided divorce was a high price to pay to keep my little secret, so showed her. She read the whole thing and gave me very positive noises. I considered stopping it,but thought someone read it and seemed to like what i had written - even if he had a vested interest in the case. I thought longer, and begun to wonder what this cold be one day. While right now it is an internal dialogue and what is on my mind, one day it will represent my entire journey with the whole Williams Syndrome thing.
So i have my second member and this made me think about when I might publicise the fact I have been doing this. I didn't think too long before forgetting all about it. That was until E's Mum recently started a blog of her own and looked in to traffic and things. So I looked at mine - never thought abut it - never expected it - I have never told anyone about it. However, I have been viewed, a lot - USA, New Zealand, Russia and Germany. I'm amazed - truly amazed - spurred on, I have decided to tell people on E's 1st birthday. This is still for me and will remain that way until I feel that what I have to say can be deliberately aimed to help someone else. If in the mean time it helps someone, or someone finds it interesting, I'm glad - and I think I'd even like to hear about it.
Two posts in a week - maybe I'm really getting in to this - I've certainly been thinking more about things I'd like to get off my chest or talk about on here - hopefully you'll see some of them soon.
Cheerio for today world...
Wednesday, January 25, 2012
Postcode Lottery
E's care is something which i have taken a keen interest in since we got the diagnosis. I have become mildly obsessed with his check ups and what additional care he may benefit from.
This is new to me, i usually have to reintroduce myself to my doctor each time i go and visit. So interaction with the healthcare system is a new and challenging minefield. This has been exaggerated by us apparently living in a difficult area. More on that later.
E was born and received initial care at Epsom hospital. This was chosen from 3 options for both children - ease of getting there, parking etc etc made it an easy choice. With E, the care has been amazing (to be fair it was great with C too - just shorter lived). Dr C is the lead consultant and has played a major part in the last 9 months of our lives. He gave us the news in a very compassionate way, he has guided Es care through a confusing myriad of tests and clinics, we receive the letters and turn up - this even includes a cardiac specialist making visits to Epsom rather than us travelling up to St Thomas's (Evalina) once every 3-6 months.
So far, you are probably thinking - sounds pretty good, where's the lottery? - Us too until of course the care requirements include "portage" and "therapies". This, in my language, is the non medical care - physio, speech therapy, occupational health. For this, apparently we live in a "diffficult area". This care is supplied through a doctors surgery - this is where the finding is provided - and then paid out from. So Epsom is one borough, our doctors is in s second borough and we live in a third. None of this stops us choosing Epsom as a hospital, or for that matter receiving care from our doctors surgery - however, this is where the simple inclusive system ends. Take a bow Kingston health trust - take a bow! Our surgery is in Kingston and they receive the funding for Ethan's care - however, it has taken 6 months, numerous phone calls and more letters than you care to think about from various medical professionals involved with Ethan's care. So, where are we now after all this - apparently they have accepted their responsibility (despite us living in a "difficult area"), and the latest is - Physio - high up the list, month or so; Occupational Health - 3 months or so; Speech Therapy - "wouldn't hold you breath" - you heard me!
Until very recently we were under the misguided assumption that this was portage - but it isn't. Portage is an all round service for pre school children with additional needs. The borough in which we live has now made contact about this and we are being seen next month!
So Kingston, my son is not important enough to you.... well this is how important he is to me. When recently suggested that if the hospital development care was shifted to Kingston as it may make it easier, i responded that i would sooner move house into the area covered by Mid Surrey!
This is new to me, i usually have to reintroduce myself to my doctor each time i go and visit. So interaction with the healthcare system is a new and challenging minefield. This has been exaggerated by us apparently living in a difficult area. More on that later.
E was born and received initial care at Epsom hospital. This was chosen from 3 options for both children - ease of getting there, parking etc etc made it an easy choice. With E, the care has been amazing (to be fair it was great with C too - just shorter lived). Dr C is the lead consultant and has played a major part in the last 9 months of our lives. He gave us the news in a very compassionate way, he has guided Es care through a confusing myriad of tests and clinics, we receive the letters and turn up - this even includes a cardiac specialist making visits to Epsom rather than us travelling up to St Thomas's (Evalina) once every 3-6 months.
So far, you are probably thinking - sounds pretty good, where's the lottery? - Us too until of course the care requirements include "portage" and "therapies". This, in my language, is the non medical care - physio, speech therapy, occupational health. For this, apparently we live in a "diffficult area". This care is supplied through a doctors surgery - this is where the finding is provided - and then paid out from. So Epsom is one borough, our doctors is in s second borough and we live in a third. None of this stops us choosing Epsom as a hospital, or for that matter receiving care from our doctors surgery - however, this is where the simple inclusive system ends. Take a bow Kingston health trust - take a bow! Our surgery is in Kingston and they receive the funding for Ethan's care - however, it has taken 6 months, numerous phone calls and more letters than you care to think about from various medical professionals involved with Ethan's care. So, where are we now after all this - apparently they have accepted their responsibility (despite us living in a "difficult area"), and the latest is - Physio - high up the list, month or so; Occupational Health - 3 months or so; Speech Therapy - "wouldn't hold you breath" - you heard me!
Until very recently we were under the misguided assumption that this was portage - but it isn't. Portage is an all round service for pre school children with additional needs. The borough in which we live has now made contact about this and we are being seen next month!
So Kingston, my son is not important enough to you.... well this is how important he is to me. When recently suggested that if the hospital development care was shifted to Kingston as it may make it easier, i responded that i would sooner move house into the area covered by Mid Surrey!
Thursday, December 8, 2011
Dadddy's Boy
It seems like just days ago when I as writing about the fact I would be writing here more often - and now when I look it was two months ago - can't change that now - and after all its a promise to myself as this is an internal thing more than anything.
Anyway, onto the point of writing today - it is a celebrate post for me - E is a great is Dadddy's boy. C, his older bother is a real Mummy's boy - which is a source of much frustration when he won't let me do anything for him and whenever I ask him to do something he respond "want Mummy". E however reacts when i arrive home from work - i get sqwauked at if I don't show him some attention immediately that I arrive. When i play with him, I get the biggest "Williams" smiles (for anyone stumbling upon this who does not know about that special smile I'll sort a pic soon. I know its me as his Mum can spend all afternoon trying to get smiles and they come when I get home! I know this is not such a delight for his Mum, who woks hard looking after them all day - but for me its the first time I've really experienced t in the 3 years C has been around.
Perhaps he knows that his Mum will be much better at dealing with all of this than me - perhaps he knows I have already had my days where I don't really know how to plan for him (and i don't deal well with that). In a strange way he is making it impossible for me to ignore the here and now as it's so nice for me to spend time with him, which reminds me.... its play time - E has been very patient, just making his little noises while C watches some TV - play time then work!
Next time a medical update and a study in brotherly love - some things Williams does not get in the way of, perhaps even enhances.
Anyway, onto the point of writing today - it is a celebrate post for me - E is a great is Dadddy's boy. C, his older bother is a real Mummy's boy - which is a source of much frustration when he won't let me do anything for him and whenever I ask him to do something he respond "want Mummy". E however reacts when i arrive home from work - i get sqwauked at if I don't show him some attention immediately that I arrive. When i play with him, I get the biggest "Williams" smiles (for anyone stumbling upon this who does not know about that special smile I'll sort a pic soon. I know its me as his Mum can spend all afternoon trying to get smiles and they come when I get home! I know this is not such a delight for his Mum, who woks hard looking after them all day - but for me its the first time I've really experienced t in the 3 years C has been around.
Perhaps he knows that his Mum will be much better at dealing with all of this than me - perhaps he knows I have already had my days where I don't really know how to plan for him (and i don't deal well with that). In a strange way he is making it impossible for me to ignore the here and now as it's so nice for me to spend time with him, which reminds me.... its play time - E has been very patient, just making his little noises while C watches some TV - play time then work!
Next time a medical update and a study in brotherly love - some things Williams does not get in the way of, perhaps even enhances.
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