The Hardest Part

I’m sat here watching you savour the tiny chocolate found behind today’s Calendar door. You marvelled at the surprise of it all, shouted with excitement at the shape of Santa’s face etched into the piece. The twinkling of the Christmas tree glares proudly behind you, casting illusions of Yuletide bliss.

In that instance, I’m taken back three years ago – your first Christmas and your Sister’s too. Christmas time hasn’t always been easy for us. I remember that first year, endlessly forging forced memories for your sake – trying our hardest to cover our Hearts breaking on the inside, wanting you to experience the magic of it all. Needless to say, we failed! It was hard for us to escape the trauma of having a newly born premature baby fighting in NICU whilst we celebrated the season. Even at nine months old, you sensed the pain we were all feeling, I’d even say you were feeling it too.

For the past few years, we’ve tried to compensate for the memories you missed out on and so far, I think we’ve done a marvellous job of that! But there’s something about this year which has us all thinking about the hardships of three years ago, maybe it’s your ages or maybe it’s because a Hospital visit never seems too far away these days.

When your sister arrived nine weeks early, we always knew there’d be long term repercussions. What we didn’t consider was the ways in which you’d also suffer. This, for me, is the hardest part.

During your sister’s first year, it was easy to pretend your role of ‘Brother’ was solely that. You’d play with her, entertain her, snatch her toys when you thought we weren’t looking and stare at her with both joy and jealousy. It was all as normal as we’d expect. The times your sister ended up in Hospital, we kept your routine as structured as we could and sensed your adaptability to the situation. In truth, you were mainly oblivious to what was happening.

Now, it’s harder to hide the truth from you.

Not yet four and I already know how burdened you are by it all. I see it in your face, hear it in your cries. Siena’s disability and illness impacts us all, as a family unit. It impacts you in ways you shouldn’t be expected to deal with at your age. It’s unavoidable, inescapable and completely necessary. But sad.

Daily, I see your role of ‘Brother’ extend far more than usual. You’re carer, protector, Teacher and Tolerator. I see you with her when you think we aren’t paying attention, I listen to the advice you give her, how you will her to progress. I watch you struggle to keep your calm when you’re amidst the centre of her frustrations. I watch you handle your own temper when she claws you, bites you and throws her fists in angry temper. I want you to know how amazing you are, how your patience keeps both Mammy and Daddy going as we try to deal with this new awkward phase appropriately.

I also see the other side, the side where you’re fed up of coming second, of your needs been pushed to second best. And that, for me, is the hardest part. I hear the pain in your tears, I feel the injustice of it all and I’m sorry.

All you ever seem to fight for is equality and I don’t know how to give you it.

Today, before the opening of the Calendar, we ventured to Beamish. You cried all the way because you wanted the same treatment as your sister. You demanded we carried you the entire thoroughfare, tears streamed uncontrollably each time we tried to put you down. Some may have looked at you, an overgrown child demanding the comfort of your parents’ arms, and thought you were highly coddled. How could they know that this is your best effort to feel equal to your sister? How could they know you see Siena being carried as confirmation that we love her more, that we show her more affection? It is, of course, so untrue! But I’m struggling to teach this notion to someone so young and incapable of understanding. I’m desperately trying to make sure you feel your worth, that you can differentiate between us helping Siena, not loving her more.

The jealousy you face, you increasingly demonstrate, is fuelled by circumstances far out of our control. Circumstances I wish so badly I could change – for us all. If only you realised how privileged you are, how lucky you are not to need us the way Siena may always need.

There are times when Siena’s needs are so demanding, you’re forced to take a second seat. We’ve expected too much of you, asked you to understand why our arms are preoccupied. There are moments I see it in your face, you feel lonely, you feel like we’ve no time for you. That, for me, is the hardest part! I remember those nine months (as minuscule as that sounds) when my arms and heart belonged entirely to you. Trust me baby, there will always be time in my heart for you. There will always be space in my arms as well. You are never second loved, second best.

It’s not always about the jealousy though, it’s the worry that hurts me the most.

Siena’s health puts a strain on us all. You’ve developed your own fear of becoming poorly, you despise the idea of needing a Doctor or nurse. You’ve seen your Sister admitted too many times to count, held her hand as Doctors administer her meds.

You’ve cried! Each time she’s admitted, I feel your fear. It must be so daunting to see her so poorly and not understand what is wrong. The last time she was in hospital, we were in Center Parcs , we left you with family whilst myself and your Dad accompanied her. I doubt I’ll ever shake the pain in your voice as you insisted you were coming. I watched the tears flow violently from your cheeks and knew how much you were hurting. It kills me that you suffer so much when she’s ill – it kills me that I’ve no idea how to subside your fears effectively.

All I can do baby, is tell you how much we love you – and thank you for being the most amazing little boy. You didn’t ask for any of this and neither did we but we’re here, living life the best way we know how.

I just hope you know how proud we are!

We love you more thank you’ll ever know!

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