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Smile, Though Your Heart Is Aching

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© https://unsplash.com/@andurache

Since the day we received Jude’s diagnosis back in September, aged 13 months, the world has looked like a very different place. It’s amazing how your life can be turned upside down in a moment. I no longer see the future in the way that I did. I don’t want to think too much about it as it scares me. We don’t know what lies ahead for our little boy. Nobody does. He has a rare chromosome disorder – idic15.

The list of possible problems he’ll face is extensive. He may or may not suffer with all of them (autism, seizures, absent speech, mobility difficulties, to name a few). We have no choice but to remain strong and hold it together for the rest of the family – to take things day by day.

Our two older children (seven and four) don’t really understand. I can see that lovely childhood naivety they have as I watch them happily playing, and I feel envious. I wish for a day that I could feel like that again – happy and trouble-free, without that gut-wrenching sadness that floods my body daily, when I remember why my world has changed. There’s a glimpse of a peaceful moment first thing in the morning, when my brain hasn’t caught up with my heart yet and all is good with the universe. Then I remember, and that sinking feeling returns. I often wish I could jump back in time to when I was pregnant, before I knew there was anything wrong with my baby. Life was different then. I honestly don’t know if I’ll have a day where I’m 100% happy ever again.

I read somewhere that receiving a chromosome diagnosis for your child is like experiencing a kind of bereavement. That’s exactly how it feels, as though my heart has been broken, and I am grieving for my little boy. But he is here with us, living and breathing, so how does that work exactly? There are so many families out there who experience horrendous things that I can’t even imagine, when their children are cruelly taken from them. That’s real loss. Compared to them I’m so lucky. I’ve not lost my baby. I get to cuddle him every single day. So I’m stuck in this weird limbo-land. My heart actually aches, like a real physical pain some days, and I’m adrift in this vast sea of hurt, anger, sadness and fear.

I suppose I’m mourning the life I had imagined he’d have. I wanted him to be a happy little boy, and to have every opportunity that my other children have. I still do. Every time I look at Ray (my four year old) playing with his toys, running around the garden, chatting and laughing with his sister, I wonder if Jude will ever be able to do those things and live a ‘normal’ life. And I’m desperately sad because deep down I think I know the answer.

I find seeing pregnancy or birth announcements on Facebook particularly difficult,
even though Jude is almost two. I can’t help it, but I’m ashamed to say it makes me feel sad. Sad for me, sad for Jude, sad for our family. I’ve never walked past so many ‘baby on board’ badges as I have in recent weeks. I see pregnant women everywhere and I can’t help but feel that horrible pang of jealousy. I wish it would stop. Will I ever be able to look at a baby again without that feeling of hurt, anger and loss? Some days it’s ok, I can deal with it. And others it takes the wind out of me. Those are the bad days when I need to dig deep for my strength, I know it’s there, and hold the tears in until I’m able to have a good old cry. Then, dust myself off, put on a smile and carry on. So that I’m strong and ready for when one of my kids asks me, ‘why isn’t Jude walking yet?’, ‘will he ever speak mummy?, and I answer them with a lump in my throat, ‘I don’t know darling, I hope so’.

There it is, that word, hope. It shines a light on the darkest moments and gives you something to believe in. Every time I look at Jude I feel so much hope for what he might achieve. I have faith that this beautiful boy of ours will reach his milestones, just a bit later than others, and he will surprise us all. I still have hopes and dreams for him, but they’re very different to the ones I did have. Instead of hoping he’ll go to university one day, maybe play the guitar, or be good at sport, I’m focusing more on the here and now, and wonder if he’ll ever be able to hold a pen and write his name? Will he ever say ‘mama’? Your expectations change, they have to. One thing I’m certain of though, is that whatever he does, he will make me so proud. He’s chosen me to be his mummy, and for that I am truly blessed.

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© Cat Cartwright

I want him to always know how much he is loved by me, his daddy, and his big brother and sister. They adore him, and it’s so beautiful to see. Their love knows no boundaries, he is their baby brother and they will always be there to protect him. I’m not sure I’d be as strong on this journey without them, and I’m thankful everyday for the light and love they bring into our world. They keep us grounded, keep us smiling on darker days and remind us that life must go on, as it always has.

11-17 June is Rare Chromosome Disorder Awareness week, organised by the wonderful charity Unique (rarechromo.co.uk). I am writing this to try and help spread awareness about these rare disorders and what it’s like for families living with the realities they are suddenly faced with. It can’t be sugar-coated because life just isn’t like that. I can only be honest and explain how it feels.

I’d like to end on a positive note. Writing my blog and reaching out to families In similar situations has been a huge source of comfort, knowing that you’re not alone. Reading other people’s stories makes you realise that everyone is fighting their own battle, you just can’t always see it. Having Jude has already taught me to be a better person, a more patient mummy and thankful for every day I’m alive. We’re only here for a short while and if we don’t love, smile and find joy in the small things, then what actually is the point? Living for the moment is all any of us can do, and Jude reminds me of that every day.

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