This past week has been CHD awarenenss week. Finally ending on Saturday with Sweetheart’s Day…not Valentines Day. This is the day chosen by worldwide organisations to help raise money and awareness for Congenital Heart Disease.
I say sorry because I really haven’t posted anything. Anywhere. About raising awareness. There was a ‘photo a day’ challenge where we were asked to share from Diagnosis through medications and surgeries and realisations.
I didn’t share any posts or pictures.
Why? Honestly, sometimes I feel that I’ve shared too much of Chloe’s life online, and at other times I feel like I’m pulled between the world of CHD and the world of her syndrome.
Sometimes I find it hard to decide where to spread awareness. I know Rare Disease Day is coming up too. In this month. Which is another day where people try to raise awareness and funds to help those affected by rare diseases, such as Smith-Lemli-Optiz Syndrome.
I’ll be honest. I sometimes feel very isolated by the world of CHD. And I’m not trying to be mean or ‘reverse’ awareness or anything. I fully support CHD awareness, for goodness sake I’m a volunteer support worker for Heartkids!
But I don’t meet many other families who have kids with serious heart problems and a syndrome. I don’t meet many families who have a child with a serious heart condition alongside other issues. They don’t often attend weekly therapies and have ongoing developmental issues. Sometimes I hear my CHD friends say how glad they are that their child doesn’t have any delays like they were warned they would. I hear them excited about this, and they should be. They should be happy that their child is doing so well! But I think sometimes we should choose our words carefully when we’re speaking to other families who are affected.
This always has a bit of a sting for me. It stings to hear the words ‘I’m so glad my child doesn’t have any delays’.
Because mine does. Is this the worst thing that could happen? I mean, what if your child did? You would still love them and fight for them just the same. Mine does. I sometimes feel like I stick out like a sore thumb when it comes to the CHD world. And gosh, wouldn’t I wish for Chloe with every cell in my body that she didn’t have developmental struggles! I would, over and over and over.
I often see questions posted online like ‘does your child with CHD also have a genetic abnormality?’ And I see a few answers from a few people who do. And then that’s it. And then they almost go into invisibility, because perhaps like me, they feel weird in the CHD world.
And, yes, sorry this one may offend….I often feel left out, but more importantly, I feel like the CHD world only wants to display pictures of kiddos who don’t have syndromes, because perhaps it’s more palatable to the real world.
Much like the perfect looking children in the catalogues. Though not too far back an American company used a little girl who had Downs Syndrome in the catalgoue. How I wish that this hadn’t caused a fuss and attention wasn’t drawn to it! Why? Because it would mean it was the ‘normal’ thing to do! And the world was more accepting.
Ouch, sorry my Heartworld. Sorry to my other ‘Heart mummies’. Sorry. I didn’t raise awareness this month for CHD. It’s a very important cause. Without money raised research wouldn’t happen. And that research is why my daughter is doing so well. Only the last 30 years or so ago kids like my Chloe wouldn’t have made it as far as she has. The people, the surgeons who dedicate their lives to researching and saving children with CHD are deserving of these funds to continue research. And acknowledgement. They make miracles happen each and every day.
CHD is a cruel disease. An almost invisible disease. You could be sitting reading this on your phone on a train right now and be sitting next to someone with CHD. It’s not obvious to everyone. It’s silent.
I know people who have lost their babies far too young because of heart disease. My lovely friend in the UK lost his baby boy at only days old. Friends I’ve met here through my ‘heart world’ lost their little girl at only weeks old too. They fought hard but didn’t make it. CHD is cruel.
Then there’s a baby in my SLOS world who was born with almost the same heart defect as Chloe and lived only one month. I have never forgotten this baby. Always in my thoughts and mind.
There’s many realisations that come along with having a child who has CHD. Although Chloe is doing phenomenal now, the path to her next surgery and after that is unknown. She might need pacemakers, more surgery, maybe a heart transplant. And honestly, we don’t know how this looks or how this will play out since she also has a syndrome. I once had a doctor tell me that (when I was still pregnant with Chloe) if the baby had a syndrome they might not do the surgeries.
That was heavy to hear. Because perhaps her life isn’t as valuable as another child who doesn’t have a syndrome?
You can see why I often feel on the outer of the Heart World. But just because I do, doesn’t mean I don’t support all the amazing work that charities and organisations do to build awareness.
So friends, who live near me… I ask you to SAVE THE DATE…. Sunday May 3rd. All over Queensland each region will hold a ‘Walk’ to raise money and awareness. I will be organising the Gold Coast! So please, save the date in your phones now… on your calendars… and come walk for ‘Chloe’…or your own heart babies and help raise much needed funds for kids who suffer with CHD. More details to follow as the event comes closer.
So… Heartworld, I hope you accept my apology for not posting this last week. I’ll make up for it in MAY!
And if you are looking for a charity to support and donate too… check out Heartkids! 🙂
Chloe's story 