You have one, so you may as well be one… The story of a Lamborghini, a big heart and an ‘Emotional Firing Line’.

Well, the past few weeks have definitely been busy ones. We took our first trip to Leeds for T to have his ‘Detailed Heart Scan’… and detailed it was! We were in with the very nice Sonographer for nearly an hour, and he was able to use an advanced machine to look in detail at the functionality of T’s (big) heart. He took 97 pictures in total to be analysed.

We are still awaiting the full results from this but looking at our most recent letter from a cardiology appointment in September, we are hopeful that everything is still beating as it should be. Hurrah! All he could tell us, is that the Cardiomyopathy is ‘all the way around’. All the way around what exactly, we don’t know. It could be an artery or an elephant for all we are aware. We now need to wait to discover if we will be continuing to see the Cardiology team in Leeds or if it will mean a trip to see the team at Great Ormond Street.

Just before half term, the Mean Machine (T’s wheelchair) became a full time school accessory. I think we were all a bit apprehensive about how this would go. After the first day I asked T how he had found it…

“It was brilliant! It was like having a Lamborghini!”

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Well. That’ll teach us to worry won’t it. Not sure you’ll see the Mean Machine on Top Gear any time soon though.

Nicky (T’s Specialist Nurse) also went into T’s school to speak to the children in his class about his Friedreichs Ataxia. Initially, T was unsure whether or not he wanted to be present for this. In the end he decided to stay… and then took over the presentation. Spot the Drama Teachers son eh? What was completely amazing was how happy he was when he came home…

“Nearly everyone in the class asked a question! And then I told them all about my shaking and helped Nicky.”

We are so proud of him and how amazingly he has handled this. He also seemed genuinely relieved that his friends knew. His teacher contacted me to say how wonderful he had been and how confident he was helping Nicky deliver and talk about the condition. J and I also sent a letter home to the parents of the children in the class. We didn’t want the children to go home worried about T or his illness, or with questions that their parents would be unable to answer. It wasn’t anything particularly profound, just a brief explanation of T’s conditions and links to websites which could provide more info, along with an invitation to follow our little blog. The support we have since received from said parents has, quite simply, been overwhelming. Our ‘Circles of Support’ seem to have expanded again. It is truly wonderful to know that there are so many people who care about T and want to help.

Over half term, T went away to a caravan with his Grandparents, Great-Grandma and Baxter the crazy Mexican pug*. He had the best time with them – playing board games, swimming and generally being pawed by a mental dog.

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J and I however, went away with some friends to NYC. After what has been a very emotional and challenging year, it was lovely to have some time away just as a couple. We laughed, ate too much food and walked so far that my ankles looked like they belonged on a Rhino and I couldn’t get my shoes off. We definitely needed it though. And our friends got engaged too!

T had, in true T style, sent me to NYC with a mission. He wanted a Halloween costume of epic proportions. Something to go ‘Trick or Treating’ in which would stand out. I can’t say I was overly concerned about said mission. New York is a shopping Mecca! And its in America, where Halloween is effectively on steroids. EASY!

Yep, easy. Well easy if I wanted to dress my 9 year old boy child as a slutty Taco. Remaining options available in the ONLY SHOP we found selling Halloween costumes:

  • Slutty Taco
  • Black Panther (can get this in UK – no epic result here)
  • Unicorn (slutty unicorn optional)
  • Minion Goggles (that was it, nothing else – JUST GOGGLES)
  • Face paint
  • Waffle (make of that what you will)

After much deliberation (and a very patient friend – thank you Char), I opted for a Minion goggles and face paint combo, thus creating a ZOMBIE MINION:

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Not bad for the limited options available. T managed to walk 3/4 way round our street too before needing to come home to rest. In this short time he accumulated an epic haul of treats, so a success all round I’d say!

T’s mobility is definitely on the decline and we are having to use the Mean Machine much more. Every time we go somewhere new with it, its like seeing the place with fresh eyes. Finding a fireworks display was interesting to say the least. The amount of research we did to find a venue which would be wheelchair accessible was unbelievable! It was worth it though. Also, J wheeled him into a pot-hole on the way to the hospital on Tuesday. I now feel better knowing I am not the only one who does this. I feel we may need to take a driving test.

We also embarked on our first Mean Machine/Dog/solo Parent walking mission. Not gonna lie, we had an unplanned Pug-Husky sledge situation going at one point. However, I managed to get both child and dog home in one piece. And T only nearly rolled away once… so this is an improvement.

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I’ve had a few low moments this week, as some of T’s symptoms are progressing a bit faster than we thought (or hoped?). I’m particularly struggling with the fact that there isn’t much anyone can do to stop or slow this down. I find it hard to accept that in this modern day and age, there is ‘nothing’ which can be done. T’s poor consultant got the full brunt of my frustrations surrounding this. I know its not his fault. He just got caught in the emotional firing line. Its a dangerous place to be sometimes. I had a bit of a melt down on a lovely friend, and then felt that I needed to pull myself together, or “stop being a Fanny”, as I so eloquently put it.

“You have one, so you may as well be one.”

Very profound words from said lovely friend. It definitely made me smile if nothing else. So there you go. I’ll leave you with that.

*Baxter was in fact born in Leeds (/ the North Pole), however upon arrival with us I decided that he definitely looks Mexican. And so he is. He is a Mexican Pug from San Juan. The End.

3 thoughts on “You have one, so you may as well be one… The story of a Lamborghini, a big heart and an ‘Emotional Firing Line’.

  1. Hi was just like to say how much I looked forward to your emails they have me smiling and also tear up your so good at writing them. My daughter was diagnosed at 11 and shes 18 now everything that your going through is bringing back so many memories but you seem to have a wonderful family and friends supporting you which will make all the difference to you . Take care and will look forward to Ts updates hes a lovely looking boy and a very brave one as well .

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      1. We are thankyou good days and bad days at the moment mostly good so thats a bonus πŸ‘πŸ˜ look forward to your next instalment of life with T xx

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