If food be the music of love

To my little darling,

I want this to be clear. We are not giving up on you. No way. This is not us admitting defeat. Not by a long chalk. Just pressing pause for a bit. Giving you chance to rest. A time out.

We’ve all tried. Tried so very hard for four long years. Day in and day out. And we are all exhausted – mentally and physically. No one is winning here. It would be a different story if it was working, but it’s not. Not the way that we hoped. Not the way we longed for.

You must know I am sorry. So very sorry. Sorry for so many things.

I am sorry that, even though it is one of my biggest and most important jobs as a mother, I can’t physically get enough food into your little body to make it grow, to stop you feeling that constant gnawing hunger.

I am sorry that we are meeting your stomach doctor in a few weeks to set the wheels in motion to do the thing we’ve been fighting to prevent for so long. I am sorry that we have lost this battle. But hopefully not the war.

I am sorry that I am going to let surgeons slice into your smooth, soft skin and fit a tube directly into the stomach. I am sorry that I am scarring you on that perfect spot that I kiss every day after your bath in anticipation of this. I am sorry that this will hurt.

I am sorry that 6 hours of feeding you was not enough. That there can’t be more hours in the day to sustain you. That even though Daddy and I would feed you mouthful of mush after mouthful (all day and all night if we could), it is beyond clear to us now that you need much more than we can give.

I am sorry that Mother Nature is a bitch. That  survival of the fittest is an actual thing. That she reduced the odds even more for the weakest among us – that so many of your friends like you are plagued by crippling reflux and food allergies making feeding so complex. Often impossible.

I am sorry that this has always been our story. From that second night when you had rapid breathing and they made you nil by mouth. I am sorry that I left you in the capable hands of the nurses and fell into a dreamless sleep upstairs. That your wails still haunt deep in my psyche. That I can’t forgive myself for turning away when you needed me most. That I was not strong enough to hold your little hand on that dark long night.

I am sorry that we can’t get your reflux under control. I am sorry that all I can do is watch as the pain sears through your stomach and gullet. That you can’t get comfortable in the night despite being shattered. That all that acid churns on top of a barren stomach wall. That I can hear it rumble pitifully when you fall into a fitful sleep in my arms.

I am sorry that you’ve had on average just four hours sleep each night for the last five weeks – that you have zero energy. That you were flying with your motor skills and now you are too spent to even try.

I am sorry that we panicked and whisked you off to A&E in the middle of the night – your screams got that bit louder and we were frightened. We’d have never forgiven ourselves if it had been something “else”. How you loved the fuss and attention as poor Daddy felt like a fool. He’ll forever be my hero though for taking you for that reassuring check over.

I am sorry that the chances of you ever eating again once the tube directly fills your tum is incredibly high. That you’ll never have the simple pleasures that come with tasting something beautiful. Ice cream on sunny days, cake on your birthday and Christmas dinners are not going to feature in your adventures. You’ll ever know the joy and excitement when Nanny pulls out the treats.

I am sorry that you are cross a lot of time. Frustrated at spending hours in your chair. Crabby that your belly is empty all too quickly and you can’t quite recognise it as hunger – just something that you don’t like so much.

I am sorry that we have placed your brother and sister on the back burner as we prioritized feeding. That they have had to display a patience beyond their years. That they don’t have the certainty that when they lay their heads on their pillows at night that they will slumber content until the morning. That they are often brutally awakened by your screams.

I am sorry that all those sessions of feeding therapy did not work. That you became too complex for your dietician who keeps offering up new suggestions of food. I am sorry that we were too afraid to try them. That a full bowl of the same old slop is better than half a mouthful of a new exciting taste. That we couldn’t afford the gamble. That the odds were always too high.

I am sorry that nourishing your child – an ultimate privilege of parenthood – was always that step beyond us.

I am so sorry.

But my brave little man. What if?

What if by taking all the pressure off you that you can go at your own pace – that you can explore all these new tastes on your terms?

What if for the first time food becomes about pleasure and not survival?

What if tube feeding gives you that strength you’ve never gained –  that walking comes sooner rather than later?

What if you get to sleep, recharge and rest?

What if your days become all about giggles and play?

Imagine how worthwhile it’ll all be my complicated sweet child. How all this fear, sorrow and regret will be forgotten by one amazing thing.

What if…please God, what if…

You thrive.

Gabe.piano

 

P.S. I am also sorry to the Shakespeare purists for changing one of his greatest quotes to suit my own ends.

5 Comments on If food be the music of love

  1. Not A Frumpy Mum
    October 21, 2015 at 8:49 am (1 year ago)

    Oh Alison, this is so beautifully written, I can’t even imagine what you must be going through but I really hope the tube feeding is successful and Gabe does thrive. You are an inspiration! xxx
    Not A Frumpy Mum recently posted…Blossoming Gifts ReviewMy Profile

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  2. Amy
    October 21, 2015 at 3:31 pm (1 year ago)

    Oh Alison, he will thrive with a full tummy! And tasting will become a joy rather than a chore.
    You have done beyond amazingly. I hope this changes all your lives for the better. I think it will. All my love xxxxxx
    Amy recently posted…The Novelty Parent RulebookMy Profile

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  3. Beth @ Twinderelmo
    October 23, 2015 at 9:54 am (1 year ago)

    I hope more than anything you get your what ifs & the days are filled with play & laughter as he thrives and flourishes xxxxx
    Beth @ Twinderelmo recently posted…So You’re Having Twins?My Profile

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  4. Laura
    October 25, 2015 at 4:40 pm (1 year ago)

    I hope so much that the joy and giggles come amazingly quickly – a full tummy may just be all the magic you’ve been missing and needing. Thinking of you all xx

    Reply
  5. FIFI
    February 15, 2016 at 7:57 am (1 year ago)

    Beatiful

    Reply

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