Hugo de Savary's – living with learning disabilities.

Archive for the ‘My Life’ Category

A month ago when at a wedding, I met a medic who asked me what line of work I was in. In response I gave a very brief background of HFHC, that it catered for people with LD without mentioning my link to it. What happened next took me completely by surprise; the medic in trying to be humorous used what I can only describe as the crassest language imaginable to describe the people supported within the sector, and then proceeded to asked me how I found myself involved in it. Shocked, but not one to preach, I calmly answered his question whilst ignoring his inappropriate language. After a couple of seconds that felt more like minutes, the medic’s face went bright red and an apology was spluttered.

In response I’d like to say that I told him where to go, instead I told him not to worry as he wasn’t to know. Should I have made an excuse? In most circumstances I’d still respond in the same way, especially as I’m not always the most PC amongst friends and believe that you don’t dish it out if you can’t take it – but to strangers I’m on best behaviour. Naturally you would expect most people to take this approach, especially a doctor who should have known better when talking about such a sensitive subject.

Anyway, it is not my aim to tarnish the whole medical profession with the same brush as the majority are decent individuals. However, there are still cases of people with LD being diagnosed and  treated without sensitivity or dignity, which is problematic right across the country. So when the Royal College of Nursing creates some new guidance in this area, it’s refreshing – hopefully leading to a greater awareness.

Now 8 months into fatherhood and how my life, as a happy go lucky chap has changed from a year ago. Gone are the regular drunken Friday and Saturday evenings spent with friends, gone are the regular outings to the cinema and gone are the random weekends and holidays away mountain biking, sailing, skiing or beach bumming.

Well, I thought this was the case, but until recently, much to my amazement these things are still possible, albeit with some restraint and unbelievably they’re just as enjoyable, if not more than before… probably because there’s a balance to my past hedonistic life and there is no denying there have been some difficult and challenging moments due to sleep deprivation and general weariness that may have contributed to this.

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Over the last few years Christmas has been spent in the Alps with a school friend and his family, however for me, this Christmas was the start of a new type. Although Poppy is too young to indulge in Father Christmas, she certainly picked up on the festive spirit and was spoilt by the family.

For the last 10 years, my sister Laura has chosen to spend her Christmas at wherever she lives. This could be that she thinks that Christmas with her family is rubbish, but I’d prefer to think it is because that she has so much fun with her peers and the staff who support her, that nothing comes close. Since Christmas is not the same without her, it has meant that my folks and I have been flexible about what we do.

So, when my Uncle generously invited us to come and stay at his gastro pub, the Carey Arms at Babbacombe in Devon for a family Christmas – it was met with a resounding, yes. If you’re looking for a treat by the sea, then rest assured you won’t be disappointed, the food here is excellent with the boutique accommodation and sea views to match.

The appearance of this sort of establishment specialising more on food and less on ‘wet sales’ is obviously a result from this country’s excessive alcohol duty and the smoking ban and another place that we sampled that has embraced this new paradigm, is the Cowshed in Bristol. This gastronomic pub/wine bar has only recently opened. Here they do a reasonable 2 course lunch menu for £10 – good value and tasty, but their piece de resistance is the alien like crab that is the star of the Discovery Channel’s, Deadliest Catch. This Alaskan King Crab delicacy consists of just the crab’s legs and tastes much like lobster and served with a Thermidor sauce, is delicious. We tried a small sized leg which still measured a jaw dropping 30cm long – I’m told that the bigger ones are a mind boggling meter in length.

In our very novice role as parents, Kirsten and I only a few weeks ago had an experience that has shaken us. Poppy only 4 weeks old, had a snivel and an appointment had been made to see the doctor to make sure nothing was untoward. Kirsten noticed just before leaving for the doctors, that Poppy’s breathing had gone shallow, upon further inspection she became convinced that it had actually stopped. Very panicked all 3 of us half dressed (early morning), fled the house for the hospital, leaving doors unlocked and keys behind.

Fortunately we only live a 5 minute drive away from the A&E and up to that point I had not been entirely convinced with the gravity of the situation, but equally was not about to start arguing with maternal instinct. The severity only dawned on me in the car, when I glanced over at Poppy who was in Kirsten’s arms and noticed that she had gone a grey colour and appeared to be going in and out of consciousness. Read the rest of this entry »

After a labour that seemed to go on for an eternity, Kirsten has finally given birth to a baby – and not the boy that we were told  to expect by the doctors. Fortunately for us, we hadn’t paid too much attention to this information and the nursery hadn’t been decorated sky blue. More importantly, Poppy our daughter appears to be healthy and Kirsten, although sore, is making a speedy recovery. Any of the concerns that may have been present during the pregnancy have evaporated, replaced by relief, elation and joy. For me, I’m coming to terms with this new paradigm of stinking nappies, crying and sleep deprivation, but happily can’t stop singing the lyric from the Zombie’s tune of ‘68: Time of the Season…Who’s the Daddy!!?!

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This week has got off to a mad start, and it has nothing to do with a baby appearing, despite my wife Kirsten being due to pop at any time. Yesterday, we were both at home, smelt smoke…investigated… and saw fire shooting out of a window 3 doors down. A quick 999 call to the Fire Service resulted in 12 fire engines rocking up promptly. The fire looked like it had taken hold and was spreading, the worry that I felt in my stomach was indescribable – we grabbed car keys, wallets, mobile phones and the hospital bag and left the building just as the lights started flickering. Fortunately the fire fighters professionally tackled the blaze, no one was hurt and Kirsten didn’t go into labour.

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As a young adult, my parents mentioned that I should think about getting a genetic test as there was a higher than normal probability that I might have an abnormality with my chromosomes. At the time it didn’t seem relevant, as having children was a million miles away and being brutally honest, the potential consequences of the results terrified me. So like many young people in a stressful situation, I buried my head in the sand and got on with living in denial.

Fast Forward 15 years the inevitable has happened, my wife and I are expecting a baby – unexpected! My previous denial has caught up with me and there is obviously no choice but to take the test… Read the rest of this entry »