andywg

[andywg]

Peeking out post bath

[andywg]

My little baby appears suddenly to have grown up into a young boy!

Today I had to apologise to him. Not because of something I did or said to him today, but because I have been really struggling with coming to terms with everything and all it entails.

We have had two admissions to hospital in a week for seizures. As ever, it’s the hope that gets you, and we had gone past the expected time for the next seizures so I thought they were under control. But no.

And still I struggle with seeing all the babies of friends and family all developing as one would expect. The main plus point for us is we have been in hospital we are able to offer support to the parents of a young baby suffering similar symptoms (but from a different diagnosis).

But I will be honest. I still wish we were not here.

And may failure to be able to run has also destroyed my mood.

And that is why I apologised to my son. To say sorry for still not quite having accepted who he is.

I don’t doubt that at some point I will get there, it’s just taking some time to do so.

[andywg]

A New Direction

Well, I have been fairly cool with this blog for some time, but now I wonder if it is time to try and put some effort back into it. However, as if to make up for lost time, this is a long one (as the actress said to the bishop). The subject is tantalisingly held out for you above the jump. 

Those who have followed for a while will know that I used to run quite swift, but then fell out of love with it and life just kept getting in the way. Recently my wife gave birth to our first child and we have been engrossed in the first time parents thing, which has been made more complex by his frequent hospital admissions. Firstly he was in for airway issues and severe reflux, and this spring he developed a sever epilepsy that required three admissions in two months, the last one was so sever (Status eplipticus) that the only way to control the seizures was to sedate him, put him on a ventilator to breather for him and send him to Paediatric Intensive Care Unit to monitor and extubate when he was settled sufficiently. This took some time as he failed the first attempt as the ventilator tubes inflamed his laryngomalacia, Effectively he was in a coma from the Sunday to the Friday and then needed some proper management for opiate withdrawals as he was a rhino to sedate. Whilst my son was in the hospital we got the results of some tests run after his first admission two months before. We finally had a diagnosis to explain the epilepsy, the ataxia (shaking movements) and the delayed development - my son has Angelman Syndrome – a chromosomal disorder which appears not to have been inherited, he just happened to win a really shit lottery with odds of 1 in 15,000 to 20,000 at the time of his conception. This will leave him with mild to moderate physical disabilities and severe mental and learning difficulties.

This was hard to take in. I have always queried whether I might really be up to the job of raising a child and my one certainty was that I did not believe I could cope with looking after a child with serious mental disabilities; I just could not even begin to empathise with what one must go through. Now, in a heartbeat, I am told I will have to find out and master it. The first step was a kind of grieving for the life I had thought I would have with my son. Any hopes of running and cycling with him, or watching him play rugby were scuppered. We will be quite lucky if he walks unaided and the general expectation is that he will speak between 5 to 10 words (though comprehension should be better such that non-oral communication with PODD books and the like allows better expressions of their feelings). It also means he will never live an independent life, we will always be parents to a toddler of some age.

And after feeling grief and upset (and constantly asking why this had to happen to us) I then feel guilty as I still love him and nothing will change that and I feel I should be happy for what we do have, mostly being a permanently happy child, rather than sad for what we have not.  Then there is the fear of just how will I cope with this?

The exact details of how our home will have to be modified are yet to be discovered as depending on how he develops depends on what the house needs. Whilst it will certainly need some level of wheelchair access and him to have a downstairs bedroom and bathroom, if the wheelchair is only required for when he is ill rather than all the time then it changes our approach.

I try to remain positive in the outlook, but suddenly it seems like everyone I know has a healthy child that is developing normally, any social gathering just rams home the condition. This was hard in the period after our first baby was miscarried, but at least then there is a finality to it. Again, I do not wish death or anything ill on my son, but this is something I have to face and deal with every day of my life. I know that is a little dark, but I can say it is not the darkest thing to cross my mind for a fleeting moment since we received the diagnosis. And having so many people now say they know we are strong and will make great parents for a child with Angelman Syndrome does not help as much as they might think it does. The sour part of me thinks how that is exactly what I would say and then wake up the next day relieved that it was not me going through that.

Thankfully, for now, the epilepsy appears to be under control, and that is what will cause the immediate risk to my son's health and development. That period of 9 days in in intensive care knocked our son back a few weeks as well as restricting our ability to to give him physio to help him develop as much as we can. As he has presented with his epilepsy earlier and more severe than many, we have a diagnosis much earlier than many others, so we have a chance to try and assist with the alternative communication and applying the physio to help develop the weaker muscles.

For me, I am waiting for a good recommendation so I can get counselling to deal with all sorts of issues I have (and no doubt some I don't notice I have) and come to terms with this. There are so many points, from the medication timetable meaning we cannot simply wake him and feed him, but have to plan things around meds that need half an hour either side without consumption, to needing to put in the physio work such that when after time for feeding, on the bottle, napping and bathing there is so little time for just playing and enjoying having a baby. Further, there are so many hospital and doctor appointments it is tough to get into any routine.

However, I should be thankful we are no longer in PICU and are home and seemingly improving.  For reference, here he is whilst in PICU but shortly after coming off the ventilator:

And, more recently, seemingly telling some secrets to the cat from CATS (Children Acute Transport Service - the charity that transported him from our local hospital up to London where he was monitored whilst on the ventilator):

When I am away from other children, and just spending time with my son, his easy broad smile and infectious chuckle make me not care for anything else.  And for now that is the most important lesson, to enjoy my son for being the small baby that he is. Today has plenty enough concerns that there is no need to borrow worries from tomorrow.

Finally, as a concluding homage to my original purpose for this blog, a new member of my team at work is a beastly good runner and seems to have taken me under his wing as a project. Despite my frequent protestations (particularly when I am busting a gut on a short effort and he leans in to quip that this is his marathon pace) he has worked wonders. Before I started 8 weeks off work to become the primary carer for my son I was in close to, if not the, form of my life. I finally broke the 20 minute barrier for 5k, but did so at the halfway point in a 10k race. I managed a 29 second 5k PB on my way to an 89 second 10k pb (40:38) of a time I had set only a month before and way faster than my last best effort of 44:17 in 2011. The next step is a marathon or two and then I will ponder some longer things. Providing I can find the time to train.

[andywg]

We've all had days when the bowels don't move as well as we would like...

[andywg]

I know I have been away a while, but look what cuteness I bring back! The next neon athlete is here.

[andywg]

Sometimes

Sometimes I issue a less than well concealed call for help on other social media. It is never answered. At that point I feel less bad about those I have deleted from my social media profile, or at least what remains thereof. It is, however, all a pile of gash.

[andywg]

Crimbo work functions

Imagine being upset at work and the hours intruding on your personal life, yet still at times preferring work functions to going home.

[andywg]

Lost

One of the worst things about having been someone who was fit with aims and hopes is to fall so far off the wagon that you can barely run 3 miles and see people setting personal bests whilst you simply pile on weight until you are heavier than your hoover days and not far off tight head weight but with none of the strength. All it does is remind me how far I have fallen. It was amusing on twitter to post one pic how happy I was that I married my wife, and another considering the loss and trauma of losing our unborn child. Loads of people liked the former, nobody reacted to the latter. I sometimes mention that I don't bother with people who make no effort, hence why I lose "friends" easily. But given how many people I have met and supported on twitter, to receive nothing in response to what was essentially a call for some support hit hard. On the plus side, I will lose no sleep over any of them if they only are interested in the happy side of my life.

[andywg]

Imagine a year where you get to marry your soulmate, then have an amazing honeymoon before being evicted by people that by blood are family (but are no longer treated as such). Then you discover you are to be a father… Before your wife is in hospital recovering from the operation to deal with the miscarriage effects. And on top work gets harder and you have yet more exams to study for and sit. Then you find a home, but the sale takes forever as the vendor is not dealing with it seriously. It’s been a pretty hardcore year. And unsurprisingly I have had almost no time for training so am in my worst shape in I don’t know how long. And now I am ill as well. And my mum is still waiting to hear whether the indicators were cancer and my dad has had a complete memory loss episode. Stressful times. Still, soon be Christmas and then i can promise it will better next year, like I do every year… But at least I really did get to marry my soul mate.

[andywg]

It's the smaller things that drive the pain

After the delight of seeing my first child's heartbeat when we were expecting to be told it was a blighted ovum, everything felt amazing. After a tough year things were going to go our way. The chance to be a father was almost too amazing to comprehend. Sadly I didn't need to spend too long worrying as two weeks later the heartbeat was gone, replaced with pain and bleeding. Another scan confirmed the lack of growth. Within three weeks of the joyous scan seeing what I thought would be my first child's heartbeat I was eating lunch in the car in a hospital car park waiting for my wife to come out of surgery to clear up the "remains" of the miscarriage. Them's the breaks I guess. Life once again proved it would not be a simple affair. And so my focus turned to my wife and supporting her as obviously this affected her far more than me. It was her who had been pregnant after all. Dealing with her guilt was gut wrenching. I knew she had done nothing, but this did not stop her blaming herself for the miscarriage. There was every chance it was my speed that meant the foetus was unviable. Then there were the apologies as if she had let me down... But we struggled through. And then someone at work one lunch time down the pub asked when I was going to start trying for a child. (I had told few people at work what had happened as I did not want pity and statistics suggests at least half of the parents would have gone through a miscarriage in some form or another). So I just laughed, and continued laughing when a jibe about shooting blanks came in before heading back to the office early blaming "loads to do". And that was one of the harder things. That and seeing all the happy pregnant people, and bumping into a childhood neighbour with his child born that day as we had the scan which confirmed it was a miscarriage, and the wall of cards from the recent births amongst co-employees in the kitchen. I do not begrudge them their joy, but I do feel a pang of loss that I have missed out on such happiness. But thankfully fate will not leave my tale in such unhappiness alone. Instead I have been suffering from illness and stress that has meant so little training I am now my heaviest in over 5 years. That and my mum has indicators for two possible types of cancer in her bloods. Thanks fate. You cunt.

[andywg]

Dear God

I am impressed. When I think I have hit bottom, you keep smashing me down lower. Love andywg. Ps: you are still a cunt.

[andywg]

Oh, and thanks to my amazing wife I've also finally replaced my heavy old bike with a new one. Better is that it's carbon fibre with electric gears. Going from something so bad to so good is amazing. And again makes me want to run even less. But mostly because I love the thought of riding up hold on this beauty.

[andywg]

Directionless

After the game at Thames Path 100 I tried the solo 24 hour race I had. It was too much and I had too little. I managed just 30 miles in 7 hours and that was me done. Physically I was uncertain, but mentally I had nothing. All the stress of being kicked out of our home by family all crashed in and I spent a fair amount of the night curled into a foetal ball crying. What that meant was that I had to pull the challenge. If I can manage 15 miles out of 100 and only 7 hours of 24 and my mental strength shot there was no way I could get ready for 184. And I just didn't want to. So I stopped. It means I have failed a task I have spent 18 months wanting to get to do. Hardly something to make me feel great. On the plus side I have moved back "home" so can gain with my club again. On the down side, club not is my only run of the week now. I just can't be bothered to run and make no time for it. Naturally, after so many poor training runs, I am nowhere near the speed I used to have and without training there is no stamina or does improvement. Elsewhere I have tried to get into swimming again, putting in a mile in the pool most mornings before work and have taken a minute off a pb which stood since 2011 less than a year after shoulder reconstruction. But mostly it is all directionless. I have no races booked and no desire to do so, even turning down requests for pulling shifts in club relays. Part of me wonders if I will ever race again but most of me just doesn't care. All of me wonders why I am writing this. So I shall stop.

[andywg]

Supposed to be an easy run but the legs seem not to have got that message! (HC2)

[andywg]

Felt good until coming off the Thames pat on the way back. Thah big hill proved I had been going too fast. Let myself get caught at some lights, used a crossing where perhasp not necessary and even stopped to walk the last 20 yards to top of Sidcup Road hill. Still, it's 21 miles with a decent average and give me about 6 hours training in two days. Now for wine!

[andywg]

Really was not looking for that speed after the bike ride. Dead happy with the endurance that is slowly building up.

[andywg]

Lovely day so sacked off a long run for a long ride with my wife, always a good move! Travelling the commute but at a weekend was weird. Lovely to see how much easier the hills are when I don't have a massive bag on my back! Ems did great for the first time on her road bike since probably the Sodbury Sportive. Lovely to do a loop of Regent's Park and then stop for ice cream and a drink.