To Jackie

My little girl, you’re only three (okay, you’re nearly four) but you’ve always been in control. In my womb, you stayed stubbornly breech. We planned your birth by c-section but you chose to come early. You decide when (and whether) you will sleep, when and what you will eat, who you will cuddle and who you’ll shy away from. Your teachers say you are the one who decides which game all the children play. Your most-used phrase is “No, Mummy, you’ve got it all wrong.”

You’re only three (yes, I know you’re nearly four), but already you know so much:

You know your way around the doctor’s surgery, the health centre and the sick children’s hospital better than you do the local play-parks.

You know the names of more therapists than you do Disney characters – and they are always delighted to see your cheery face.

You know how to hold a syringe and continue a bolus feed when Mummy has to answer the phone.

You know that sometimes Mummy can’t play with you, that sometimes Mummy sends you to extra sessions at nursery, that sometimes Mummy goes away to the hospital with your brother and isn’t home to read your bedtime story.

You know when Mummy needs a hug, when your brother needs a hug, when Daddy needs a great big hug.

You’re only three (mature enough for four) and you don’t yet know all the things you miss out on:

You don’t know you couldn’t go to the pantomime with your friends because Mummy couldn’t take you.

You don’t know that we rush home every day after nursery when others go to the play-park, because Benjamin’s feed is due.

You don’t know – yet – that Benjamin is different. That he won’t start to walk and talk like you expect. That your life will always be shaped by his schedule and his needs.

Your don’t know that your normal isn’t everybody’s normal. You think weekly hospital appointments are a part of life. You ask things like: “When I was little, did I have a tube in my tummy too?”

You don’t know to complain, because this is all you’ve ever known.

You’re only three (okay, we can call it four), but you graciously bear the brunt of all my impatience, wait patiently while I’m dealing with your brother, and forgivingly slip a little warm hand into mine.

It breaks my heart when you say you don’t want to go to nursery again, you want to stay with me and Benjy.

It makes my heart sing when you ask for a cuddle with Benjy every morning before you get out of bed. When you reach for his cold hands to warm them. When you kiss his cheek and he beams at you.

You might be only three, but you are the star that lights up every minute that I’m with you, the beacon that keeps me moving forward, the glue that holds this family together, and the net that catches me when I fall.

Sisterly love

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