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Right Now

She’s been crying in the bathroom for almost half an hour.

It started because she didn’t want to have a shower

but really, it’s because she can’t take any more time in the hospital.

After seven days she is done.

That and the fact that she is insanely overtired, having spent the majority of the day awake for the first time in days.

In six weeks she’ll be eight.

It’s so hard to fathom that this girl can’t make it through the day without feeling absolutely, to the point of tears, exhausted.

It is how it is though.

In the bathroom her sobs echo loudly as she heaves and snuffles and peels off into wave after wave of sadness and I am both sorry for her and cranky for a while as I struggle with my own feelings and cabin fever.

I don’t understand why she is having this breakdown.

I don’t but I do.

My couped up self fights with the urge to be understanding.

Frustration boils under the surface every day you are locked in a small space but I know this is about more than my request that the small girl shower – the request that started a cascade of grief.

It’s about loss of control

and loss of family

and loss of normality all rolled into one enormous explosion of emotion

and I get that.

I totally get that.

I ask her to stop but she can’t.

I go into the bathroom and try to coax her out with words but it doesn’t work.

She has squirrelled herself into the very corner of the shoebox room, between the (un)helpful handrail and the toilet – her head resting against the wall, her tears streaming down her face, eyes squeezed shut.

It’s not easy to see your child like this.

“I’m so sorry,” she says as I pick her up and transplant her to the bed, draw the grey hospital issue blinds

and turn off the lights.

I don’t know what I expect – for her to concede to sleep when she has spent the day largely refusing my every suggestion.

To give into the exhaustion -

to give into me.

“I’m sorry,” she cries again

and when I ask her why she is apologising she says she is sorry for being mean to me all day

and for being angry

and for being sick.

It’s all her fault – all of it and I should have just done away with her at birth.

It’s then that I no longer want to butt heads with her.

It’s right at that minute that I fully understand what this is about.

I appreciate self blame.

She agrees to a shower then.

She is spent.

All of her fight is gone.

In the shower she apologises over and over – the words spilling from her mouth and running away with the water,

into the drain -

cleansing her little spirit as well.

I say: “Now, you listen to me. None of this is your fault – it’s genetics and you just can’t help that and you’re not expected to be happy about it either”.

I tell her we are all doing the best we can and she is braver and stronger than any other person I know.

She says: “actually I’m always sad when we have to come to hospital but sometimes I can’t hide it any more, that’s not brave at all”

and then: “a hug from you would help”.

So I wrap the white hospital issue towel around her and pull her into me, feeling for all the world that I have nothing more to give her but this basic form of affection as acknowledgement of my understanding.

This is our life right now.

High expectations

and the constant realisation that we are only human.

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23 Responses to “Right Now”

  • Jeanette (45 comments.):

    ((hugs)) and tears :(

  • Malady:

    Oh Tiff. I was so hoping that the lack of posts meant that Ivy and your whole family were off enjoying the freedom of having two cheeks, sand and sunshine.

    It isn’t anyones fault. It is what it is, and sometimes, what it is just sucks.

    Sending you best wishes for a speedy release.

  • jeanie (226 comments.):

    Oh Ivy!!! My heart breaks for you, it really does. It isn’t fair and you should be able to shout and scream and chuck a really HUGE wobbly.

    And Tiff. Hugs to you honey.

  • Laura (2 comments.):

    oh shit Tiff, that brings tears to my eyes. As a midwife my instinct is to hold her tight, skin to skin.

    Such wisdom and insight, from one so young, how to keep her from self-criticism over a genetic recipe.

    She is, and you are, the very definition of Brave.

    ((((((((((Hugs))))))))))

  • Kathy:

    Big hugs for both of you, tissues for me xx

  • Dianne Nunn (56 comments.):

    my loving thoughts are all I can send.xxx

  • Megan:

    Oh Tiff, you really are both (all ) coping with way more than your share. What a beautiful little girl. Tell her that I’ve known her since she was in your tummy (through powers of the net) and I love her and think about her often. So does her internet friend Coco. Hang in there beautiful soul.. you have made our world a better place by just being you xxx

  • river (194 comments.):

    could this all have been averted or maybe alleviated a little by suggesting a sponge bath instead?
    I know this is very hard on both of you……

  • Ramona:

    Hugs to the both of you. Wise words from the both of you. You are strong for each other.

  • Trish (42 comments.):

    Sending love, light and strength to you. It breaks my heart reading Ivy’s (& your words).

  • Paula (2 comments.):

    I wish there was something I could do for your sweet little Ivy

  • Carol:

    Hugs to both of you. It’s not fair but you are both coping amazingly.

    I have those days with my kids full of frustration and butting heads. And they are well.

    Add illness and hospital, of course it’s awful and difficult all round.

    You’re having to integrate normal child and parent behaviour into an abnormal situation.

    It’s a rotten time :(

    But once again your most fabulous spirit shines through and you get through every tough time – both of you.

    You inspire me and I’m so glad you share xx

  • Carol:

    And to that comment above..

    It’s not about the shower.

    It’s about the frustration and desire to assert oneself when all power seems gone.

    I’m sure any suggestion of alternatives would have had the same response.

    :(

  • Jan:

    Ivy is growing up and able to express her frustrations very well. Dear brave people, both of you. Perhaps that big cry might help her cope in the next few days. Thinking of you both so often.

  • Anne:

    You are a very courageous girl Ivy. That’s the word for brave when u r almost 8. Part of being very courageous is to tell your mum what you are really feeling when you need to, to cry and to let it out. This will fill your courageousness back up and help you keep being courageous. We all need to cry at times and it’s nothing to be sorry about. I pray to God that you feel well soon and can go home. Hugs…..and more hugs …

  • BW aka Barbara from Boston:

    Did you all manage any days away in the sun @ the shore? Hope she got a few days to enjoy the nasal canula being gone. Glad to hear from you – was worried.Sorry the sucky sickness couldn’t take a holiday ALL BY ITs nasty little self. Lots of love, oodles of comfort, chocolate to be taken PRN (as needed). She is growing up fast – such mature conversations you two shouldn’t have to have.Such a brave resilient loving and fighting (the boogies) family.

  • Nadia:

    The thing about being brave is that one never gets a choice in it, you just get thrown into circumstances you don’t like and you have to do your best. I am 25, and my Mum still hugs me and tells me I’m brave when I’m crying – and I think that maybe the times you’re crying and need a hug are the times when you’re being the bravest. Your poor little girl. I wish she didn’t have to be brave. I wish she could focus on being a hundred million things instead.

  • Mandi:

    I’ve been thinking about you guys and checking in on you here to see if you’ve been able to give an update. I’m sad to hear that Ivy is unwell and back in the hospital again. I, too, can appreciate self-blame and it breaks my heart to hear it coming from such a sweet little girl. It sucks that she was dealt this hand genetically but over and over again I am awed at how well you all take it in stride and continue coping and even thriving despite so many medial crises. I’m sending my love and lots of hugs over the big, wide ocean. I hope she can go home soon and get back to just being a little almost-8-year-old girl. <3 <3 <3

  • mum:

    At almost 8, it is so sad that Ivy has come to understand the true nature of her genetic condition and what the future will mean for her. Even sadder is the fact that she feels responsible herself and thereby needs to apologise. All the woe and remorse seems to stem from the realisation that despite all efforts by all concerned to improve her well being, it is still an ongoing and intermittant happening beyond anyone’s control, most of all hers.

    You are doing all that you can as her mum and carer, in comforting her when she needs it, in reassuring her that this is not her fault, nor is it anyone’s, that it is just a part of who she is, and in constantly encouraging her coping skills and bravery.

    My heart goes out to you both as you manage each other’s emotions in the very best way that you can. xoxo

  • Peg (7 comments.):

    sending love and and hope that Ivy feels better soon and gets to go home. She is one brave little girl.

  • Jennette:

    I’m so sorry Tiff.
    You and Ivy are handling it so well. I truly believe you are.
    HUGS and best thoughts being sent your way

  • Ariane:

    Hugs and prayers for you ang your family

  • Dianne (35 comments.):

    Please tell Ivy that she is very brave and so many people think so. She is also sweet and wise and kind. Thinking of you both and hoping you are now out of hospital and home again.

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