Stories from the heart – Adventures from the Heart

Throughout Heart Month, I’ll be sharing various stories from heart families about their experiences. Today’s post is from Lee who, with his wife Freya, blogs over at Adventures from the Heart.  Lee and Freya’s second child Erin was born with hypoplastic left heart syndrome, the same heart condition that my daughter Jessica has and was treated at the same hospital.  It has been lovely to meet Lee, Freya, Erin and Erin’s older brother Noah a few times at charity events and to see how well Erin is doing on her own heart journey.  Today Lee is sharing some words of encouragement for other heart families – thank you Lee for being willing to share some of your story and your words of hope for other heart families.

Stories from the heart: Adventures from the Heart - Little Hearts, Big Love

Don’t Give Up

Don’t give up. Those three words, however inconsequential they might seem for some of us, resonate deeply in my heart.  As a father to a nearly two year old with a Congental Heart Defect (Hypoplastic Left Heart Syndrome) I faced countless times in those early days when I was unsure that I could carry on.  This is but one perspective of the challenges faced by a heart parent, but if you too have faced these obstacles, then perhaps some of this will be familiar.  If you are currently surrounded by uncertainty then I hope you may find some comfort in these words.

Stories from the heart: Adventures from the Heart - Little Hearts, Big Love

Don’t give up, but carry on.  There have been countless moments when we have agonised whether it was the right decision to put our child forward for surgery.  Seeing Erin smile and run, albeit in her breathy manner, dance in her Snow White costume or sing Twinkle, Twinkle are moments that we would never be able to cherish had we not carried on.  I will never know how much time I have with her but I would go through it all again and again to recapture these special moments.  Erin has captivated my heart; the fight in her and strength of character are clear and I don’t doubt that she will make a real difference in this world.  She has already enabled us to consider what’s really important in our lives

Stories from the heart: Adventures from the Heart - Little Hearts, Big Love

Stories from the heart: Adventures from the Heart - Little Hearts, Big Love

Don’t give up on each other.  The anxiety and heartache of handing your child over for surgery, the daily 15 hours spent in the hospital ICU and trying to ensure that your other child knows how much they are loved even though you are not there to tell them and show them will take its strain on you and your partner.  It is inevitable, but it will pass.  My wife, Freya, and I always talk about us being a team and that together we can pull each other through.  That’s not to say that there haven’t been fleeting moments when, just for a second, we have felt that the strain of our child’s condition had finally broken us.  It hasn’t and we will continue to hold on tight and never let go.

Stories from the heart: Adventures from the Heart - Little Hearts, Big Love

Don’t give up on Hope, because without it there is nothing else.  However difficult things got, I always clung on to the thought that things would get better.  You may not believe in a God and you may not go to Church, but I found comfort in praying for guidance and for my family’s safety.

Stories from the heart: Adventures from the Heart - Little Hearts, Big Love

Don’t give up on telling everyone you meet about your child’s condition and the world of CHDs.  I am guilty in the past of glossing over the details, perhaps feeling that other people wouldn’t understand, but I have learnt to be honest and tell it like it is.  If the person you are talking to learns one small thing from your conversation then that is progress. We are our child’s biggest advocates and the more awareness that we can raise the greater the progress we will collectively make.  CHD Awareness Week takes place from 7-14 February each year and is a fantastic opportunity to tell the world about children like Erin who are fighting with every heartbeat.  Please help us spread the word.

Stories from the heart: Adventures from the Heart - Little Hearts, Big Love

Little Hearts Big Love

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