There aren’t enough words.

The most common thing J and I are asked, is how we cope with everything that is happening to T. The truth of the matter is, that we don’t. Not really.

In a few weeks time, it will mark a year since we received T’s initial diagnosis of Friedreichs Ataxia; and looking back, it really has been one hell of a year. On the whole, I’d like to think that as a little unit (T-Unit!), we have dealt with things rather well. We try to stay as positive as we can. We go for days out, we spend Sundays in our PJs watching movies, J and I book trips away together (so we don’t forget about each other, and our relationship, amongst all the craziness), we play endless games of Trivial Pursuit, we kick a football round the garden with our mental ass Mexican pug who thinks he’s Ronaldo, and we laugh. A lot.

“I don’t know how you get up every morning. If it was me, I’d just stay in bed and cry.”

Yep, its definitely been tempting at times. Hiding from the world with a jumbo box of Kleenex and a family sized bar of Galaxy? Sign me up. Only problem is though, what about T? Our amazing little man who has a smile for each and every single day. Would hiding from all of this help him? Not on your nelly. So we plod on. And you know what? Not every day is bad. We don’t walk around 24/7 with a giant black cloud following us and a flashing sign reading ‘ILLNESS IN FAMILY’. That being said, its not always easy to paste on a smile when you feel like things are falling apart – something which a lot of people can relate to, for a lot of different reasons, I’m sure.

It got back to me, not so long ago, that during a particularly challenging few weeks, someone had said:

“Well she obviously isn’t struggling with things that much, she was having a whale of a time at the weekend!”

This was because there had been a picture of me, dare I say it, LAUGHING on social media. Can you believe it?! Someone arrest me, quick. I’ve violated the rules of being sad and going through a bad time. As it turned out though, what said person hadn’t seen, is that I had spent 98% of the weekend in tears.

A very lovely lady who I have recently come into contact with says:

Life goes on, with or without Ataxia.

How right she is. These illnesses effect our life, but they haven’t, and they won’t, become our whole life.

We are also incredibly fortunate to have the most fantastic support network around us. Our family, friends and medical team have been nothing short of amazing. We couldn’t get by without them, of that I am 1000000% sure. They help us to take on each hurdle. They laugh with us through the good times, and are a shoulder to cry on through the bad. They are the Mum and Dad at the end of the phone, or down the street, whenever we need them. They are the best friend, who books a surprise Afternoon Tea and arranges for some of my closest girlfriends to travel from all over the country, just to make me smile. They are the cousins who don’t bat an eyelid because I have freaked out about driving in the wind, and miss an event (in my defence, it was VERY windy) or stage an ‘intervention’ when they know you need one. They are the amazing work colleagues, who give you a hug and make you a cup of tea following a hospital appointment. They are tomato bread and a shared ambition at a favourite restaurant. They are the friends who offer to take on the most RIDICULOUSLY hard challenges to raise money for Ataxia UK; because they love your little man as much as you do, and they want to help. They are the lovely person who sits in the hotel room with you because you can’t face a crowd. They are the followers on Social Media who read about your journey and acknowledge it with a friendly word or a smile. They are the friends who you love with all of your heart. They are the family you adore and wish you could see more of. They are the medical team who see you ‘after hours’ because they care about you. They are the boss who researched your sons condition so that they understand. They are the friend who cries in the street because it is unfair. They are the ones who get you drunk and let you babble. They are the new friends made through a community we didn’t know existed. They are the wolf pack who send inappropriate WhatsApp messages, but always ask how T is. They are the teachers who cuddle your son when he falls at school. They are the ones who don’t know what to say, but we know that you care.

They are the reason we can carry on. And we cannot thank you enough.

x

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One thought on “There aren’t enough words.

  1. James, Lucy and our amazing Thomas. Dad and I love you with all our heart. I know how you get through each day because you wake up to that beautiful smile our Thomas always has. Today was particularly hard for me to pick our boy up from school in his wheelchair. I needent have worried though because in Thomas’s words he was the “coolest boy in school” Love you all unconditionally ❤❤❤

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