Running up that hill

JUDE OCT17

Hello,

I’m aware that I haven’t written for a while, things have been somewhat busy on the day-to-day, but here’s a little update on how life is going with our gorgeous boy.

Jude is continuing to impress us everyday with his sheer determination. He’s cruising around the furniture all the time and can walk along holding a hand – albeit wobbly! He’s so close, I literally cannot wait to see him take his first proper steps, I will almost certainly burst into tears with happiness and pride. I can’t believe how much I took for granted with my other two. This little man is working so hard at it, he’s such a courageous little soul.

We have started the Hanen Course which is a speech and language therapy programme for parents of children with communication delays. It’s really good to meet others who are facing similar struggles to us. We’re learning to be even more patient with Jude, to wait longer for his cues and let him lead. We are imitating him constantly and trying to extend his sounds. He definitely understands waving now and tried to copy ‘bubbye’ the other day. Such small things, but so huge in his world. Despite the difficulties our life is absorbed by, we’re so enjoying the little character he is becoming. He makes us laugh all the time.

In other news… I have just been offered a place in the London Marathon (!!!) running for the charity Unique. I have always wanted to run in the Marathon and it seems like the right time now, to do it for such a wonderful cause that is very close to my heart. I am terrified and excited at the same time. I know this will be the hardest thing I have ever done – way more so than giving birth – alone with no drugs(!) – but I’m up for this challenge, for Jude, for myself, and for all the families out there that Unique have helped and continue to support on their journeys.

I will be setting up my sponsorship page soon and will be so grateful if people can support me. I’ll need all the encouragement I can get! I will try my best and keep an update of how my training is going… so watch this space!

That’s all for now folks, I’d love my next post to say that Jude is walking independently – but these things take time and he’ll do it, in Jude time.

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Birthday bumps

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As we approach Jude’s second birthday this weekend, I’m feeling more than a little reflective and remembering exactly how I felt this time last year.

My little boy was about to turn one, that huge milestone in all babies’ and parents’ lives, and I wanted to throw a little party for his first birthday. But the reality was I was sick with worry about him, we knew something was wrong but didn’t know what. He couldn’t even sit up alone yet or clap his hands. All my brain kept doing was compare him to my oldest boy Ray who was running around on his first birthday and it felt awful. The last thing we wanted to do was shine a spotlight on Jude, highlighting everything he couldn’t do. I felt in a way like we had nothing to celebrate, which sounds so harsh. Writing that down makes me feel guilty for thinking that, but I remember just wanting to hide him away from the world, from the judgement, the looks, the unsaid comments on people’s faces. I know this all sounds very negative, and this post isn’t supposed to be negative so bear with…

I’m getting around to the fact that, a year on, we’re reaching another big milestone, his second birthday, and I feel very differently to how I felt 12 months ago. So much has happened in the last year. We have a diagnosis and are slowly coming to terms with what that means. Time is proving to be a great healer and a very important part in the acceptance process. We’ve moved to an amazing new home and met some lovely new friends. I’m really lucky to have great support around me, to have such a beautiful family and wonderful husband. I feel much more positive about Jude and where he’s headed. He’s achieved so much in the last year proving to us what a brave little fighter he is, and how much determination he has. He crawls, claps, climbs the stairs and stands on his own. I had quietly hoped he would have taken his first steps by his second birthday, but I know that will come. I need to be more patient still. Patience by the bucket load is needed with developmental delays. There is no point in putting unnecessary pressure on something we have no control over. He will do things in ‘Jude time’ and will get there, eventually.

He’s making lots of sounds but as yet no words – despite me saying ‘mama’ to him a hundred times a day! I’m very hopeful that he will learn to speak, but for now he can communicate with us in his own way. In the meantime we get to enjoy his quirky little character, cheeky smile, infectious laugh and gorgeous cuddles.

Birthdays are always going to be slightly bittersweet, but instead of looking at what my baby isn’t doing, I’m focusing on everything he has learnt to do. Even the littlest thing takes him so much more effort than most, and I’m so proud of him.

May you continue to fight your fight and show us your strength of character and determination everyday little man. Here’s to the next year of being your mummy ❤️

Happy second birthday to our beautiful Jude Bear X

The ups and downs…

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After the AMAZING response to my blog, I have been totally overwhelmed and felt uplifted by the love and support that people have shown us. I think I had over 1000 views in the first 24 hours which was incredible. Thank you. It meant so much to me that people were reading our story and writing to me with words of encouragement and love. It’s made me feel extremely lucky to be able to reach out and connect with so many people.

It has been an emotional week all in all, not helped by the sheer exhaustion I feel as Jude is not sleeping well. He’s most definitely teething, but I wonder how much of it is linked to his condition. I know many people whose kids don’t sleep through, I guess we’ve been spoilt up to this point as our other two have been pretty good sleepers since they were very small. But the tiredness just makes the bad days that little bit worse.

Anyhow, the thing that’s brought us crashing back down with a thud is the letter we just received from the paediatrician that Jude saw last week. This is only his second appointment with her, the last one was in December. Ben took him as I was working. I gather it was mainly a box-ticking exercise and she didn’t even realise he had a chromosome abnormality until the end of the hour! But Ben said it was just thoroughly soul-destroying as she got Jude to try and perform a number of tasks which we already knew he would be incapable of achieving. It’s like that first appointment back in July all over again.

So today we received her report giving Jude a ‘score’ and an average developmental age. A bit like receiving your exam results, only there’s nothing you can do to make the marks any better. It’s entirely out of our hands, and that’s the worst part.

Well, according to this latest assessment at 20 months old… Jude is performing at an average age of an 8.5 month old. Gutting.

It’s so bloody tough. You work really hard to build yourself up and maintain a positive frame of mind, and then you receive a letter like that, waiting there on your doormat when you come home, and it all comes crashing back down.

We’ve been seeing lots of improvement in him recently. He’s constantly making progress and the physio we saw last week was really happy with how he’s getting on. He’s been crawling since late November, is climbing the stairs like a crazy, pulls himself to stand and lets go now to try and balance on his own. And he’s finally just started clapping. It’s amazing how these tiny things can turn your week around. When he first clapped his hands together I was literally so happy. We’ve been trying to teach him for months. I have no idea when Elsa or Ray first clapped, probably something ridiculous like 4 or 5 months?! Hell, I don’t have a clue when a ‘normal’ baby starts to clap? All I know is that for months, anytime I’d see a baby clap their hands I’d just think to myself, Jude can’t do that. And I’d cry a little bit inside.

It’s the little things he does that are such a big deal in his world, and we are so proud of him.

So this letter, sent routinely as a follow up to our appointment, was not helpful AT ALL.  I know they have to send out their reports and I know that it’s based on an assessment of what he’s doing, but that’s not how I see my little boy. He’s so much more than a score on a piece of paper.

So, positive energy turns to negative and we embark on another week. This is just how it goes. Up and down. It’s like riding a tidal wave. And it’s exhausting. You never know what the next day will bring.

Here’s hoping for some sunshine.

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Welcome to my blog

I’ve been meaning to start this blog for a while now. I recently put a post on Facebook to tell friends about Jude’s condition, and was really amazed and overwhelmed by the responses from people, and the huge sense of comfort that brought to me.

I hope to use this space to document what Jude is doing: his achievements and developments, and how he’s progressing generally. Also as somewhere to write down my day-to-day feelings and have an outlet for those moments that can catch you out, when I might just need to offload. Primarily though, I hope to give others who are going through similar struggles, a sense of comfort. It can sometimes feel like the loneliest place on earth, especially in the beginning after a diagnosis, but it is so important to remember that you are not alone.

I have spent hours scouring the internet reading blogs from mothers with ‘chromo’ or ‘special needs’ children, looking for answers. Trying to find some light at the end of what seems like a very dark tunnel. Trying to build a sense of perspective that is constructive and that gives me hope.

I hope you will find some encouragement from this blog, in the way that I’ve gained strength from reading other people’s stories. Sometimes it helps to be reminded that we are all blessed in our everyday lives and it’s often the little things we overlook that make our lives complete.

I’ve written a detailed explanation of what led us to Jude’s diagnosis (read Jude’s Story So Far) at the top of my homepage.

Thanks for visiting folks, come back soon.

Here’s a recent pic of my little man joining me in our favourite cafe in Sandgate by the sea 🙂

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