What does Harry’s birthday mean to me?

Next week is Harry’s birthday… Aww I hear you think? Wow how is he four already? Normal kind of thoughts – I should be thinking. 

The truth is, I’m not – I’m panicking and this makes me feel sad. I’m thinking tonnes of tiny little thoughts. Just little blips in my head as the day goes on. I don’t want him to be four – he’s getting too big, how will we manage? This is really the pits that I’m changing his nappies at four… but don’t moan now (sheer panic) this is just going to get even more difficult.

Then I’ll be telling myself off – but at least he’s here. At least you get to see his gorgeous smiling face everyday, but it’s hard – it’s bloody hard. With every birthday comes an intense period of reflection. 

Harry turning four also kind of really confirms in a way that this is what Harry will be like for the rest of his life. And we as parents just need to get on board with it and do our best. Suck up the juxtaposition of what life should have been like, what watching him open his presents might have felt like and just try and enjoy the Harry we have now. Try and make the most of what we’ve got. And sometimes that feels impossible.

The thing is I never wanted to be a nurse, or a Carer, an administrator, an occupational therapist, a physiotherapist, play therapist, coordinator or advocate for my child but here I am. Being a mum to Harry is completely not what I had in mind and a million miles away from what it should’ve been. It not about shaping him into a person who could be let loose on society in the future, it’s more about living completely day by day to make sure Harry has the most comfortable, healthy and happy life he can have right now. 

It’s been hard to figure out what to get harry for his birthday – he doesn’t enjoy toys, instead he enjoys cuddles and tickles, us time. So for this birthday we’re taking Harry to Centre parcs to try and find some moments of just being parents to Harry. Those moments when he smiles and we know he’s truly with us, because he is and that after four years and what he’s gone through is amazing and worth celebrating.

Happy birthday to the bravest boy in the world – my Harry.

IMG_0114

Cycle for Harry 2019

51349552_2343646125904313_3677321505294778368_n

Sunday 7th July 9am – 12pm

Is cycling your thing? Fancy a challenge this year? Motivation to get fit?

Breeze Instructor Saffron is kindly leading a 40 mile cycle in Northants ( hilly Daventry area!) on 7th July to raise essential funds for Harry. There will be three groups (novice, intermediate and experienced) led by professional cycling instructors – so all abilities can enter, but be prepared for some hills!!

We will provide refreshments and medals at the end for all who participate.
It’s £25 to register and a commitment to raise additional £75. Every single penny will go to three year old severely disabled Harry! ( supporting weekly physio costs)
There will be a really good prize for the person who raises most sponsor money!

Please share with any cyclists you know and let’s get this booked up for Harry 👍

More details to follow.

Email thehelpingharrytrust@gmail.com to book your spot.

9am novice cyclists start
930am intermediate cyclists start
945 experienced cyclists start

Starting and finishing in Newnham (Northamptonshire)

 

EVENT: Famous American Musicians play concert for Harry

The Rotary Club of Danetre Daventry have pulled it out of the bag and managed to convince multi-talented singer and songwriters; Jesse Terry, Michael Logen AND Lizanne Knott to play a one-off Nashville-style concert in Daventry for our Harry. And we’re sooooo excited!!

On Saturday 27thOctober these talented artists will play a mixture of melodic folk and country songs at The Daventry Working Men’s Club that will make for a fantastic evening for all; and it’s all in aid of Harry.

Having found out about Harry, The Rotary were keen to help out and have pulled all of the strings to organise an evening of entertainment that will blow your socks off! All profits raised on the night will go directly to Harry’s on-going care, treatment and equipment.

If you would like to buy tickets please go to http://www.danetre-rotary.org.uk . Doors open at 18:30. Tickets are priced at £15 each. To find out more about Harry please go to http://www.thehelpingharrytrust.com. Tickets will be sold on a first come, first served basis.

Family Holidays

I have just returned from a family weekend break with my husband Andy, daughter Lily (5), Harry and my ever supportive mother-in-law Al. After a couple of days of reflection I wanted to tell you all about the experience.

The Pack Up

This is it, the day we pack up the van to go to Great Yarmouth. Going away with small children is no mean feat – there is the clothes; summer and winter – it’s that strange time of year.. need to be prepared. Then there are the toys, the pushchair, the car drinks, snacks and entertainment, oh and of course why not throw in the scooter, tantrums would only add to the stress. It’s madness, running around, arguments, questions about who needs a wee. Yes, this experience alone makes you stop and question why you ever booked the bloody ‘break’ in the first place.

Packing up the car for Harry and Lily is similar, we don’t have the bickering, and only one needs to be questioned about using the toilet but the list of things we need to take is ridiculous. It is a military operation- just one slip up could end our weekend.  Feeding machine – check! Nasal prongs – check! Suction machine – check! Sats monitor- check! Oxygen concentrator– check!! This goes on for about three pages.. you get the drift.

Anyway after a few hours, we’re ready.. van and roof-box bulging with paraphernalia and five relieved and dishevelled looking people.  Here we go.

The family day out

Going away with Harry was always going to be hard, physically and emotionally. If I’m honest, I wasn’t really looking forward to it. The stark contrast of what should’ve been hits you every where you go and the pressure to brave it out for the sake of the holiday is exhausting. These are a few examples:

-Pettit’s children’s park

On Saturday we decided to go to a petting zoo/ amusement park for children. I had read all about it. Whilst I’m not even sure how much Harry takes in from our trips out I thought that the tactile stimulation of touching some animals could hopefully prize a reaction (hopefully a happy one) from him.

In we go.. Lily, of course, setting the itenary for the day, she is a bossy mare at times haha. First stop petting zoo. Goats – well, you know goats, greedy beasts! And it turns out that Andy isn’t too fussed on them either, “they will chew through his feeding tube” he said (Harry has a feeding tube that feeds him through a pump directly to his stomach). Needless to say Harry had to avoid. So, they had a little nibble on Lily instead.  Flowery tops – big mistake.

Walking to the next attraction, a number of mothers looked at Harry and then at me and said “aw bless him”. I know it comes from a good place, a place of recognition, sympathy and some sort of motherhood solidarity but it also really brings home how it all looks to others, we don’t want pity we just want to try and enjoy our new normal day out as best we can.

So finally, we have some cuddly animals to stroke, Harrys sitting on my knee — – god he’s getting long and heavy, how the bloody hell am I going to be able to keep this up I am thinking. We have a guinea pig to hold. I am helping Harry to stroke it… it looks terrified! I would be too if I’m honest. And there it is, a sound of contentment from Harry .. that’s it! A worthwhile day for all. I am so happy, better not spoil it with the huge cockroach!.

Lily holds and strokes everything, she is so brave and fun-loving and  her ability to enjoy all that life has to offer makes me feel so happy and sad at the same time- you see this is what it’s like.  I spend most of my day telling myself.. Harry’s not even aware he doesn’t know any different, it’s really all about the what if’s?

Ok so, here we go, Harry has dropped a stinker! This I tell you is a friggin logistical nightmare when you have a three stone son who doesn’t fit on a baby changing table anymore. (This is where I contemplate how backwards this country still is, and how Changing Places should be made compulsory in every public place, as surely everyone should have the right to a safe and clean environment to be changed).  Anyway for now, the grass will have to do, so off Andy and Harry pop for not the most dignified nappy changes there are.

Finally we end our day, in the circus tent with Andy the clown. Lily loved it, getting involved with all of the singing and dancing, shouting out answers – it was great fun for all of the youngsters. As an icebreaker Andy “the clown” played Vengaboys song “Up and Down” kids were encouraged to lift their arms up and down to the music. Squeels of delight came from the audience. Harry and I of course joined in… Harry smiled and seemed to enjoy a good arm yanking but I did feel heart broken. At that point, I had, had enough. I felt the weight of the whole day and the huge mix of emotions. From Harrys smiles, to his squirming around in his chair, to the stares and then I looked out to what seemed like a sea of able bodied Happy children and looking at Harry with a lump in my throat I felt like I just wanted to disappear.  And there it is again – guilt!

I suppose none of it was made easier by the lack of sleep (omg are we greatful to have carers at home to manage Harry’s needs overnight) but this is just a snippet of what family breaks feel like. I am glad we went – it may not sound it. Spending quality time with both Lily and Harry was lovely but it was hard. One day I am sure that we as a family might be stronger, more resilient, even more accepting  – I mean, we have came so far already. However with breaks away comes pressure – pressure to enjoy yourself, to smile, to make great memories. To be grateful of what you have and enjoy the ones you love. This weekend was for Lily and Harry and I shall remember our short adventure with mixed emotions.The kids are only young for a short time, they won’t stay like this forever, they will grow up and they won’t want to do these things forever. Heartbreakingly this isnt true for Harry as his development age is that of a three to six month old (which is unlikely to change) and we have been told to expect that Harry won’t have a long life. SO making Harry smile is my number one priority and building memories for Lily is the most important thing to me. So with that in mind.. we have success!

harry holiday

Harry’s Ball 2018

Join us for an unforgettable evening at Mercure Daventry Court Hotel and Spa on Saturday 22nd September, 7pm until 1am.

During the evening there will be a drinks reception, three course meal, auction, disco and live band. It really is going to be a fun filled, wonderful night,

Tickets are £45 per person. Ticket sales will go directly towards life prolonging and enhancing care, treatment and equipment for three year old Harry Charlesworth. Bookings of 10 people will receive a discounted rate. Email thehelpingharrytrust@gmail.com to buy tickets

 

harry's ball