LHM Father’s Day 2020 – Paul’s Story

“Isobel has Mitral Atresia with Double Outlet Right Ventricle, which is a variation of Hypoplastic Left Heart Syndrome. She’s 10 and before we’ve blinked, she’ll be in secondary school.

Before Isobel was born, we were wracked with uncertainty about whether to go ahead with the pregnancy, a friend sad; ‘children with additional needs are, if anything, even more loved.’ He was right, but that hasn’t half been tested in lock-down!

When lock-down happened it seemed to come with little warning, and as a self-employed person prone to worry, the lock-down felt like a real and active threat to my family. It also afforded me the realisation, as ever, that while we are all in the same situation, we are definitely not all in the same boat. Hearing about young people who are unsafe and unfed gets me so angry I have to go downstairs to hug the kids.

When people ask how we are, I sometimes joke that we stay just ahead of the Government’s Troubled Families Programme. I am only ever half joking, and there have been some dark times over the past weeks, as we have individually (or worse) all together hit psychological brick walls at the same time. It hurts to see your family struggling, but at least you can still buy replacement crockery. Connecting, even over the internet, helps even the youngest.

We try not to let Isobel’s half a heart define us, but it does shape our lives to some extent. Like most of the parents using the LHM Facebook page, our first instinct was to protect and pull up the drawbridge. Novel at first, the new routine quickly paled.

It turns out Isobel is vulnerable, but not that vulnerable. The shielding texts and guidelines weren’t written with families in mind at all. I was all at sea. As ever in a storm, I reached out to Suzie on the LHM helpline, and she really helped to cut through the fog of mixed messages. Suzie’s common sense approach gave us the confidence to stick our noses out the door. Nothing bad happened, so after that (this was 4-5 weeks in) we started to go out to our local park. We became experts at dancing away from strangers. Now I see these green spaces in a whole new light. Within minutes of the front door we were fortunate enough to be able to literally walk into the Spring, connect to our neighbours and lose ourselves in games of hide and seek. Without imagination and pretend games we’d be climbing the walls. It’s lovely to hear laughter coming from downstairs rather than bloody battle.

‘This too will pass’ is a phrase that has been echoing (there’s plenty of empty space) around my brain recently. Our heart children are nothing short of resilient, but its okay if us dads don’t always feel indestructible. We’re playing a long game for our children, and that needs us to stick around. As part of the LHM online community we mostly hide behind our wives and partners, but perhaps we should find our own space. Anyone want to join me in a virtual shed?”

Post written by LHM parent member Paul, dad to Isobel. A huge thank you to Paul for sharing your story with us for Father’s Day. 

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    “Thank you very much for Chris' card. I cannot believe he is 18 and am so proud of the lovely young man he has become, overcoming the many challenges we have faced over the years, especially in the first 4 to 5 years. Thank you Little hearts matter for always being there.”

    Thank you to Chris and mum Philippa for sharing this fantastic news with us, we hope this brings some inspiration to the many families out there who are at the start of their half a heart journey.

    With YOUR help, we can continue to support the amazing young adults living with a single ventricle heart today, just like Chris here. All you need to do spare 30 seconds of your time every day to vote for LHM in Persimmon’s ‘Building Futures’ initiative.

    They don’t ask for any details, you simply click our logo on this page; biy.ly/support-lhm

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    So pleased to see Amelia here, DILV, enjoying some cycling along with her sister Evie…

    “We’ve been doing a lot of cycling this week as both girls have grown in confidence. I’m amazed at Amelia’s stamina on the bike, doing much more exercise than she’s ever done. This is the girl that needs a buggy to get home from school (in normal life). She’s found a sport that she can comfortably do. She says she feels free when she’s cycling. That makes me happy and sad at the same time ❤ “Cycling makes me feel free, happy and like nothing is in my way””

    Riding a bike is great exercise for children, teenagers and adults with half a working heart. It helps get you from A to B but is also is supported exercise for the lower body and therefore provides good support for blood returning to the lungs. There are many incentives to help get you on a bike, at the moment.

    Learn more by jumping to our ‘get fit for winter’ resource here: www.lhm.org.uk/information/lifestyle-information/get-fit-for-winter/
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