“His heart matters” A letter to my brother

“His heart matters” A letter to my brother

“Burny! Burny, burny.”, I protest. You’re burning my brother!? screams silently in my 2 year old mind; as the men in white coats explain ‘it’s just a light from the monitor on his toe, not a fire. It won’t hurt him.’ 

Somehow, I don’t trust them with their big words and violent hands. All I know is that my new brother cries every time they pull back the curtain of this shoddy hotel room – not a hotel?  OH, a “hospital”… No wonder there’s no complimentary biscuits.

I waddle up to his side, and tiptoe to reach his gaze. I grab his little hand (How can anyone be this small!?) and speak his name for the first time. Harrison. It feels strange to have company amongst mummy and daddy: it was always just us.

I was ready to reject this new addition to the family, but I conclude that perhaps he needs my help; as I wander my blue eyes – which he now shares – over the cuts and tubes in his chest, and the long bloody slice down his front that never seems to end. Do you have to cut open all babies? Or is he just broken?

I check my own chest briefly and wonder why he is different?

And I continue to ponder that for years to come – every time he’s rushed away in the night and I am left with Grandma and Grandad; every time he gets a toy for “being so brave” and I get zilch. Every time he gets more attention than me or gets to skip school. Every time he’s picked up from school in an ambulance, and I just get the lousy family car. Every time his birthday is celebrated a little bit more intensely (because any could have been his last), or he gets longer in the buggy; or even when he gets to skip the queues at Disneyworld!

EVERY TIME I ask myself, why is he different? Why is he so special?

And after years of misplaced jealousy and confusion, I eventually found the answer. The same answer my parents would always give: Because he is special.

In fact, he’s not just special – he’s a walking miracle. You don’t hear that much unless discussing Jesus, but my brother really is just that: a miracle.

Harry has Hypoplastic Left Heart Syndrome with Double Outlet Right Ventricle a.k.a ‘Half a heart’:

The doctors told us he wouldn’t survive the birth. Then, he was born. They said he wouldn’t survive a day. He made two. And then a year, and they told us not to hold out hope. But when he was still alive and breathing after his second heart operation by the age of 5, we stopped listening to those men and their lying clipboards. And today he turns 21.

From 3 open-heart surgeries, 2 keyhole surgeries, a collapsed lung, monthly hospital visits, blood tests (with Trypanophobia) as a child, to developing Tachycardia, Tourette’s Syndrome, Growth Hormone Deficiency and Depression as a teenager: he is still here.

So, I started to change my question – not why is he different? But how is he different? How does he endure all this!?

Because not once, not a single time, has Harry said stop. Or no. Or no more! NEVER has that boy given up, or stopped being strong, or not forced a smile over to me, even through his screams. Not once has he denied the pain or run away from it all.

I am in awe of him and his endurance. But, that’s not even what makes him most special. It’s not just his will to survive; it’s his will to thrive.

If I had lived his life, I know I would have given in to self-destruction, cruelty to the world and a disinterest in life almost instantly. But he is ‘a better man than I’. –

Because Harrison is not just strong, and brave. He is also bright and talented, interesting and hard-working, and the funniest person I’ve ever known. But most of all, he is kind. He is the kindest man (man? he will always be a baby to me) I know. 

He has so much love and compassion in his heart, that it bleeds out in everything he does. And with only half a heart, I’m not sure where he keeps it all?

… I once found a Will and Testament he had hastily written on his phone – during a recent, almost fatal cardiac attack – and the thing he had left to me, was his heart. “My literal heart in a jar.” And it broke my own heart.

Not because of the morbidness of it, or the thought that one day his heart won’t be beating –

but because Harry’s heart, filled with infinite kindness, compassion and love, is more valuable than any money or object he could leave to me. And he knows that.

His heart is infinite, and SO special. And I hope he knows that every day deep in his heart, until it stops beating.

He is my hero, my best friend, my muse and – most importantly – my baby brother. And even though on this day today, he finally has 21 whole years of proof that he is strong enough to protect himself – Harry, I will always be there to stop your toe from burning.

His name is Harrison Dean Wakefield, and today he is 21 years old. Remember him.

Happy birthday Harry. You are a miracle. I am so proud of you.

Your big sister always, Elizabeth