The ups and downs…


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.