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Stroking the dog.

 

 

This morning she is nervous

and her behaviour reflects this.

I am too.

She knows tomorrow is infusion day -

our first without a general anaesthetic.

Our progress has been slow and so we have ended by doing an additional four to our original plan

and it has been good.

The girl has been the happiest I have ever seen her,

without the stress of infusion days

but now we are moving towards our goal of  being able to do them at home again

and I am looking forward to that.

What I hope will happen, what I’m wishing for with all of my heart

is that over the last eight weeks, with all of the therapy

and the medical play

and the rest from the anxiety and worry

that we have been able to break that all consuming fight or flight response

and that Ivy will be able to once more use her amazing coping skills (and I mine)

to make that leap into firstly the needles with sedation

and finally without.

We have spent time just holding the butterfly needle and “seeing it for what it is” -

a thin sliver of metal straw and some plastic that will sting for a minute but helps her body to fight

and we have been talking about adrenaline and endorphins;

Her: ” Why, when I breathe, do I feel more relaxed?”

Me: “Because you have endorphins that are released to help you and that stops the adrenaline from making you feel scared”.

Her: “Oh, so the adrenaline is like a mean dog and the endorphins are like a kind person, who pats and strokes him until he feels happy and doesn’t want to bite anymore?”

Me: “Exactly”.

She is insanely in touch with her own body.

She is also very hard on herself;

“I want it to work. I want to do the needles at home but if in three weeks (four weeks, nine weeks, seven weeks - the numbers change with each conversation)

I can’t relax I want to talk to [the paed] about going back to IVIG”.

As her mother I can’t think of anything worse than having to find IV access every three weeks

or all of the side effects and complications that go along with it

but all I can do is listen and try to advise.

It’s her body, after all and ultimately she will need to learn advocacy for herself

but at 7 1/2, I think I should still be able to guide her.

I tell her everyone understands how this might be scary

and that our awesome play therapist and lovely pain doctor will go as slow as she needs.

Ivy can be determined though and her eyes glaze over whenever I mention it -

I feel like I’m being placated by a tiny pacifist.

Time will tell, I suppose.

For now, we are just going to concentrate on ‘stroking the dog’

and getting through tomorrow.

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12 Responses to “Stroking the dog.”

  • Zelda:

    I love that analogy. Your Ivy is a wise little soul.

  • Mary:

    I love her analogy too. Let’s hope for lots of kind people patting the dog…

  • tricia (169 comments.):

    Praying that the transition goes well and that you and the medical professionals involved will have wisdom with how to proceed and that God will hold you both close in this time. Blessings.

  • MFA Mama (51 comments.):

    What a wonderful analogy from Ivy, such a smart little cookie she is. Also, I love that picture so much I’d probably buy a poster of it if I had any money.

  • Trish (41 comments.):

    I hope it goes smoothly and the Ivy is soothed and calm. She is a little genius.

  • mum:

    She certainly has it all worked out beautifully according to Ivy.

    Hope all goes well and “stroking the dog” goes smoothly according to plan so there will no longer be a need for three weekly IVIG. <3 xoxo

  • kelley @ magnetboldtoo (13 comments.):

    Oh, so the adrenaline is like a mean dog and the endorphins are like a kind person, who pats and strokes him until he feels happy and doesn’t want to bite anymore?”

    This is SO amazingly profound. Ivy, you need to write a book. Write a book to tell other kids how to deal with what you go through.

    xx

  • BW aka Barbara from Boston:

    When does Ivy start her own blog? She is so profound… Don’t forget to breathe yourself, Tiff. You both are in my prayers and thoughts

  • Kathryn:

    Prayers for you and your strong wise little girl.

  • shygirl (8 comments.):

    I just read an article, and thought of you. Sounds like perfect timing – you must check out the Buzzy Bee on buzzy4shots.com. A combination of cold and vibration overloads the nerves so that they can’t feel the pain of the injections.

    Good luck!

  • Belinda:

    I wish I was as brave as you Ivy, bless your wise soul. I can’t imagine how proud you are of her Tiff.
    PS, I have been reading your blog for a little while and you have such Beauty and strength. I really love your inner ability to capture wonder in every photo you post on here too. Some make me sob, not just cry. May you road ahead be smooth.

  • Susan, Mum to Molly:

    When I read the “I want to talk to [the paed] about going back to IVIG” I felt strongly that at this stage she needs the reassurance/knowledge that there is a back-up plan…

    That part of her being able to cope & be strong is knowing that there is an alternative, not that you will ever have to use that option (IYKWIM).

    Sorry, I’m not expressing it well… My gut feeling would be to allow her to say that if she needs to, without pointing out to her how bad that option is.

    Shall be thinking of you both tomorrow, and hope you & your brood have had a lovely day, S xx

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