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.
Thursday, December 8, 2011
Sunday, October 9, 2011
Dark Days and Sleepless Nights
Yesterday marked 3 months since we were formally notified of Ethan's diagnosis. This has made me return to my blog which has been neglected a little - and makes me think i need to return to the original purpose for setting it up - to help me - to give me a vent.
I have recently been having some very dark days, filled with fear of what the future will bring - and as much as I tell myself to worry about the here and now and let the future worry about itself. However, I am a planner, i am always looking at what needs to be in place in order for other things to happen. Of course with C, this is easier - we have planned his entering school, we have decided on the school - we have put financial planning in place to fund his education to whatever level he wants to take it.
In my head I cannot justify not doing the same for E, he is just as much my son - however deep down i then start thinking about the support he will possibly need, the fact he may never leave home, the fact we may need to make alterations to our house for him, the fact that what we had planned is now not really relevant.
This, along with the start of the cold season and the accompanying sick children makes for a very grumpy me. Better days are coming, i know that and i am just trying to get through to then. Next week we go to the UK conference - and we will look into the seminars on financing, and probably just take the time to speak to other families and realise again.... we are not alone.
Be back more frequently in future....
I have recently been having some very dark days, filled with fear of what the future will bring - and as much as I tell myself to worry about the here and now and let the future worry about itself. However, I am a planner, i am always looking at what needs to be in place in order for other things to happen. Of course with C, this is easier - we have planned his entering school, we have decided on the school - we have put financial planning in place to fund his education to whatever level he wants to take it.
In my head I cannot justify not doing the same for E, he is just as much my son - however deep down i then start thinking about the support he will possibly need, the fact he may never leave home, the fact we may need to make alterations to our house for him, the fact that what we had planned is now not really relevant.
This, along with the start of the cold season and the accompanying sick children makes for a very grumpy me. Better days are coming, i know that and i am just trying to get through to then. Next week we go to the UK conference - and we will look into the seminars on financing, and probably just take the time to speak to other families and realise again.... we are not alone.
Be back more frequently in future....
Monday, September 12, 2011
E's Dad is fundraising for Williams Syndrome Foundation
E's Dad fundraising for Williams Syndrome Foundation
This is that start of a very long campaign - to raise funds for the Williams Syndrome Foundation and to raise awareness. I'll post more about the Half Marathon, fundraising and the current place I'm at on my journey as a Williams Dad - just realising how difficult it is to keep up with a Blog - but I will get better - 2 weeks holiday with my boys has blown me off course a little. I've got a target now - i can do something about this!
Friday, August 12, 2011
What a Difference a Day Makes
OK... day may be abbreviating things a little - but it still stands We've had a gap between this and the last post as E had surgery on his hernia (its been one of those weeks). We had got used to a pattern wth E - 1 good day followed by 2 bad days. The bad days were full of bad constipation and a good bit of reflux, which showed itself in a lot of crying and not much sleeping (esecially overnight). The good day would be a similar pattern - but with the difference of less screaming in between short sleeps.
E's surgery was surprising - he was allowed out of hospital the same day, and all of our fears with regards the anaesthetic were not required. Our little man was dealng with the pain petty well, considering he was only 17 weeks old on the day it took place, and that initially he was only given half dose pain medication.
So, yesterday was a trying day - E slept a lot - but in arms, never in his cot, relied on pain medication and just wasn't himself. This follwed a night of zero sleep for Es mum which put me in charge in the morning, to try and give her some rest.
Today, E has played, got tired and gone to sleep, got hungy and eaten. He's had very little pain medication and generally been a great little boy. We had a hiccup this evening, where he just wouldn't seem to go down, but we eventually concluded that may be he was in pain and just gave him a littte of the good stuff, just to take the edge off., He's now down, and i'm no going to be too far behind - i find myslef dozing off while trying totype this - and i am fighting a losng battle.
We were worried about this surgery, but so far it seeems like it has solved a lot of the problems which were cauing him difficulies in this early stage. I'm not naive enough to think that this is the last worry we will have about E, but we are relieed this one seems to have gone so well, and acheived some relief for our little man.
C ejoyed a cople of days with Nanny and Gaga in the caravan and cant wat to go back.
E's surgery was surprising - he was allowed out of hospital the same day, and all of our fears with regards the anaesthetic were not required. Our little man was dealng with the pain petty well, considering he was only 17 weeks old on the day it took place, and that initially he was only given half dose pain medication.
So, yesterday was a trying day - E slept a lot - but in arms, never in his cot, relied on pain medication and just wasn't himself. This follwed a night of zero sleep for Es mum which put me in charge in the morning, to try and give her some rest.
Today, E has played, got tired and gone to sleep, got hungy and eaten. He's had very little pain medication and generally been a great little boy. We had a hiccup this evening, where he just wouldn't seem to go down, but we eventually concluded that may be he was in pain and just gave him a littte of the good stuff, just to take the edge off., He's now down, and i'm no going to be too far behind - i find myslef dozing off while trying totype this - and i am fighting a losng battle.
We were worried about this surgery, but so far it seeems like it has solved a lot of the problems which were cauing him difficulies in this early stage. I'm not naive enough to think that this is the last worry we will have about E, but we are relieed this one seems to have gone so well, and acheived some relief for our little man.
C ejoyed a cople of days with Nanny and Gaga in the caravan and cant wat to go back.
Saturday, August 6, 2011
D.E.N.I.A.L.
Today I became aware of something of a theme in my thoughts and (sometimes) words. It's not a positive theme - but the idea is that I am not hiding from my emotions.
I caught myself today and reaised it was not the first time - what did i do? - I was exlaining to my wife that it DID look like E had Williams Sydrome, from the look he is developing - like it was something that has not yet been written. To explain, we had the results of the genetic testing which confirms he has Williams Syndrome, members of the UK Williams Syndrome Foundation have said that he has the characteristics, and not least i am blogging about my journey as a Dad of a child with Williams Syndrome!
Somewhere, deep inside, there is still a thought/wish/hope that all of this is not true. This is me telling myself, and anyone else who reads it, that the denial will be dug out and dispached. I have started to make the fact more public. I now have a symbol on my FB profile pic in support of Williams Syndrome, I have told most of my close friends and i have sought out some possible support groups.
I accept I'm not there yet, but i now know that I'm not trying to hide from it myself or hide it from others. My youngest son has Williams Syndrome and whatever he acheives, I will be very proud of him - and that is no different from the eldest who does not have Williams.
Brave words I hope I can live up to!
I caught myself today and reaised it was not the first time - what did i do? - I was exlaining to my wife that it DID look like E had Williams Sydrome, from the look he is developing - like it was something that has not yet been written. To explain, we had the results of the genetic testing which confirms he has Williams Syndrome, members of the UK Williams Syndrome Foundation have said that he has the characteristics, and not least i am blogging about my journey as a Dad of a child with Williams Syndrome!
Somewhere, deep inside, there is still a thought/wish/hope that all of this is not true. This is me telling myself, and anyone else who reads it, that the denial will be dug out and dispached. I have started to make the fact more public. I now have a symbol on my FB profile pic in support of Williams Syndrome, I have told most of my close friends and i have sought out some possible support groups.
I accept I'm not there yet, but i now know that I'm not trying to hide from it myself or hide it from others. My youngest son has Williams Syndrome and whatever he acheives, I will be very proud of him - and that is no different from the eldest who does not have Williams.
Brave words I hope I can live up to!
Tuesday, August 2, 2011
A good day is a good day!
E gave his mum a very good nights sleep last night - that is always a good start to their day. From what i can gather this continued through much of the day. This is an oh so rare thing - and i am lucky that i can sleep through a lot of it and i get to escape to work in the morning anyway. But that doesn't stop jealousy when i hear about them having a good day - I wish i was there to see it.
Today was also a very good because we got a date for the hernia surgery. This would normally fill me with fear and dread, but he so obviously has massive discomfort caused by this thing that i am looking at short term pain for long term gain. I still wish i could lay down on the table and have them do the proceedure to me but it work on him - I have explained this to many medical professionals, but apparently it is still not possible.
The third reason that today is a good day is that E's big brother, C, had his first day of potty training today and had a brilliant go at it. He only had two accidents all day and enjoyed most of the day running around in the garden with no pants on. I came home to be greeted with his own report on how he'd done - very excited and super proud. I then spent the next few hours giving high 5's in celebration of another successful visit.
Today was also a very good because we got a date for the hernia surgery. This would normally fill me with fear and dread, but he so obviously has massive discomfort caused by this thing that i am looking at short term pain for long term gain. I still wish i could lay down on the table and have them do the proceedure to me but it work on him - I have explained this to many medical professionals, but apparently it is still not possible.
The third reason that today is a good day is that E's big brother, C, had his first day of potty training today and had a brilliant go at it. He only had two accidents all day and enjoyed most of the day running around in the garden with no pants on. I came home to be greeted with his own report on how he'd done - very excited and super proud. I then spent the next few hours giving high 5's in celebration of another successful visit.
Monday, August 1, 2011
W-Day - 8th July 2011
W-Day is a strange day for me - i know it is the day i will remeber as the day we were told "E has Williams Syndromeyndrome.". However, by the time this came about we had trawled the internet and knew a little of what we were dealing with.
24th July - that was the day E had his Echocardiogram. This had come about due to a detected heart murmur and a couple of potential hereditary cardiac issues (that would be my fault). The paediatrician was becoming increasingly concerned about a number of symptoms - and this was something i was getting worried about. When he explained that he wanted to undertake some genetic testing to look for an overlying condition which could cause all of them. At this point, E's Mum (who was stood next to me) burst into tears - thinking back i think i reacted to her crying and hadn't really grasped what was being said until later.
E was back in the hospital the following day for the blood to be taken and various tests and the paediatrician came to see us and explained he was looking for Williams Syndrome.
We were numb - we went home and just collapsed into the sofa, sighing and looking at each other. E soon kicked us in to line by crying for a bottle - we came to realise E wasn't going to let us wallow in the news - he was being exactly the same baby he had been for 11 weeks, before we took him for his cardiac check up.
Three weeks passed, and we were back at the hospital for weekly obs and we got the impression that something was being prepared - and how right we were! This was where we were to be told E had Williams Syndrome - and we knew that was what we were going to be told (regardless of how much wishing and hoping i did!). The wonders of the internet had provided us with 3 weeks to read and compare how the Syndrome could show itself and Ethan.
Have i found peace with ths yet? No.
Do i know anything about the new world i find myself in? No.
Am i ready to learn? Oh yes.
24th July - that was the day E had his Echocardiogram. This had come about due to a detected heart murmur and a couple of potential hereditary cardiac issues (that would be my fault). The paediatrician was becoming increasingly concerned about a number of symptoms - and this was something i was getting worried about. When he explained that he wanted to undertake some genetic testing to look for an overlying condition which could cause all of them. At this point, E's Mum (who was stood next to me) burst into tears - thinking back i think i reacted to her crying and hadn't really grasped what was being said until later.
E was back in the hospital the following day for the blood to be taken and various tests and the paediatrician came to see us and explained he was looking for Williams Syndrome.
We were numb - we went home and just collapsed into the sofa, sighing and looking at each other. E soon kicked us in to line by crying for a bottle - we came to realise E wasn't going to let us wallow in the news - he was being exactly the same baby he had been for 11 weeks, before we took him for his cardiac check up.
Three weeks passed, and we were back at the hospital for weekly obs and we got the impression that something was being prepared - and how right we were! This was where we were to be told E had Williams Syndrome - and we knew that was what we were going to be told (regardless of how much wishing and hoping i did!). The wonders of the internet had provided us with 3 weeks to read and compare how the Syndrome could show itself and Ethan.
Have i found peace with ths yet? No.
Do i know anything about the new world i find myself in? No.
Am i ready to learn? Oh yes.
Thursday, July 28, 2011
An Experiment in Self Counselling
My second son, E, was born on 13th April 2011 and our little family was made complete. It turns out that E has Williams Syndrome - a genetic condition caused by a micro deletion on the long arm of chromosome 7. The purpose of this blog is unlikely to extend to explaining that or any of the science unless i learn something about it in my journey and process.
Anyway, i'll get back to that in the next post - maybe somthing to busy myself with tomorrow evening. I'm taking my first step in a very new world in order to help myself. I know i need to let things go and not bottle them up - and i thought the best way i can really pour my heart out is to the world, anonomously. I am not telling my friends and family that i am doing this (but i will one day in the future) - just doing it for me, whether my readership counts 0 or millions.
This will not be a lesson in how to deal with this - it will be my journey in trying to do that - and maybe one day it will help others in my position. However, i will not hide the emotions which i experience - after all i am doing this in order to set them free!
My next post will take us from what i now call W-day through to now - beyond that, we'll see where it takes us...
Live and learn are my priorities
Anyway, i'll get back to that in the next post - maybe somthing to busy myself with tomorrow evening. I'm taking my first step in a very new world in order to help myself. I know i need to let things go and not bottle them up - and i thought the best way i can really pour my heart out is to the world, anonomously. I am not telling my friends and family that i am doing this (but i will one day in the future) - just doing it for me, whether my readership counts 0 or millions.
This will not be a lesson in how to deal with this - it will be my journey in trying to do that - and maybe one day it will help others in my position. However, i will not hide the emotions which i experience - after all i am doing this in order to set them free!
My next post will take us from what i now call W-day through to now - beyond that, we'll see where it takes us...
Live and learn are my priorities
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