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To cry and be sad.

 

I hold her down again tonight,

arms pushing against tiny legs

as she thrashes and squirms and begs.

“Please, Mum.

Please.”

I feel for a place on her belly to put the needle in

and her limbs curl protectively over it,

in one sharp move

as if my arms are feather weight.

She’s strong when she’s frightened.

“Not there, it’s sore.

Not there either”.

Then where?

I can feel the sweat forming on my upper lip

and the telltale pinch of anxiety in my shoulders.

Her face crumples into a mass of tears

and stress

and worry.

“I don’t know.

My whole tummy is just sore all over”.

I don’t want to do this anymore.

Her father gets to stroke her hair.

He whispers softly to her,

tries to talk her around to letting me pierce her skin

and not for the first time since all of this started

I feel resentful that he gets to be the kind one

while I am mean.

Not of him

but of the situation.

I resent the situation.

I may have thought it many times but this is the first time I have verbalised it

and it’s like twisting a knife into my lungs.

I feel as though I can’t breathe.

Her eyes search mine to see if I will relent -

if I will give up first (and I want to, goodness knows I do)

but I can’t.

The needle is unsheathed and ready to go

and I am committed.

These injections and infusions mean healthier days and extended periods out of the hospital.

They are necessary.

A procedure that should have taken barely a minute has already  extended to ten

and I can feel the tears prickling at the corners of my eyes

from watching her distress and uncertainty.

Her hands move without destination every time I try to find a place needle worthy

until I ask Dave to hold them

and they both look at me as though I am the cruelest person on this earth.

Maybe I am.

I feel cruel tonight.

My temper is thin and I feel judged

and hurt

and un-brave.

I want to throw the syringe as far as I can and

just

run.

I don’t know how it got to this;

this place of not coping.

This place of extreme bargaining and fear

but I wish that someone would take it all away for her.

I wish that I could.

Instead I count to three and push the thick fluid into the tissue of her tummy

followed by another quickly afterwards.

“I’m sorry“, she says as she hugs me tightly and I, her.

“I’m sorry I cried and was upset but I couldn’t stop it”.

I tell her that it’s all okay -

it’s alright to cry and be sad.

I kiss the hurting places,

dry her tears

and tuck the girl and her brother in for the night

and only then

do I lock myself in the toilet to cry.

The toilet -

the only safe place a mother can release the pent up emotions of the day

without seeing the affects they have on her children.

 

 

 


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26 Responses to “To cry and be sad.”

  • Glowless (53 comments.):

    Sometimes we all need to cry xxx

  • Jeanette (46 comments.):

    I’m sad for you too ((hugs))

  • renae:

    oh i feel for you all, you are doing what is needed to help Ivy stay well, stay strong Tiff a good cry sometimes helps

  • Kirsty:

    Oh Tiff……….it is heartbreaking when we know we have to do something for the betterment of our loved ones………..but it doesn’t always make it any easier to do………Huge {{hugs}} hun…we all need that special place to cry & let it all out when we need to.

  • Trish:

    Crying for you and Ivy too.

  • Laura Smith:

    Tiff,

    I am so sorry. Alex fought me so hard on his at this age. It does get better. Do y’all have Emla Cream over there? It numbs the area and helps. We also gave him atarax to help with his anxiety for a bit. Another thing that helped was giving him some control over the situation. He picks the night we infuse, he puts his emla on, he has even stuck himself. (He won’t do it now.) Let her count before you stick. These poor kids have no control over any of this, maybe giving her some back will help with her anxiety. Hugs. It does get better.

  • Jo:

    Hugs Tiff. Lots of hugs for you. xx

  • Mary:

    Sending love. If I were there I’d do it for you…

  • Rosie T:

    No words……just love xoxox

  • Rachel:

    A mother doing all she can to bring more days at home as a family, is the toughest job ever!
    All my love tiff xx

  • Dianne Nunn (38 comments.):

    oh tiff, thanks for sharing this. It is so hard for all of you. xx

  • Anne:

    You are in my thoughts and prayers. This is love and parenting at its hardest. Xx

  • Tiff (118 comments.):

    Thank you everyone. I know often you don’t know what to say to these posts but I truly appreciate you all taking the time to reach out.

    Laura, yes, we have emla, which we’ve tried and we are waiting to see a pain doctor. Ivy’s paed has suggested anxiety meds but I am struggling with it to tell you the truth. We do the counting and I try to get her to choose her spot but often nowhere is good and that sets her into panic mode.

    Thank you for telling me your journey. It gives me hope that it will get better.

  • Tamara King:

    xxxxx

  • Mum:

    Of course you need to cry your heart out away from everyone and if the toilet is the place to allow you some release from the pain, then so be it. Whatever you do, don’t feel any shame in this. This is tough love in it’s worst form and again, it is the most difficult thing a parent ever has to face. As hard as it is though, you need to persevere if there is the promise for better outcomes other than constant disruptive hospital admissions, for both Ivy and the family as a whole.

    You need some respite from this constant stress and maybe that could help Ivy, too if she doesn’t feel the anticipation of your reaction to hers. Could you educate the older girls and Dave and have them take turns with you? That way you won’t be the only one administering the necessary meds and can in turn be Ivy’s comforter, too. Otherwise, you could make enquiries through council or the appropriate body, for a home nurse service just for those times when it all becomes too difficult for family members or even on a permanent basis. It might make a difference for Ivy, when not done by family members, to accept the necessity more readily and feel more relaxed about the procedure. Something to consider, maybe?

    I can, however, understand your heartfelt anguish for Ivy & your uncertainty about your ability to be able to continue. Continue you must, however you can, for Ivy’s continued well being. You have to try to find a solution somehow to make this all easier for you, for Ivy and for all concerned, even if it seems the only way is to closet yourself and submit to the cleansing of the soul through tears. Crying is absolutely a much needed release from all inner turmoil and a definate coping mechanism.

    I hope you know you are doing your absolute utmost as a capable home nurse and most importantly, the most loving, caring and accomplished mum Ivy could ever have wished for. xoxo

  • Mandi:

    Hugs to you Tiff and to your sweet little girl. Your entire family is often on my mind- please know that you do have lots of love and support and people cheering you on from nearby and even on the other side of the world. Thanks for sharing your story and putting yourself out there. You are a fantastic mother who has to deal with unthinkable, unimaginable stress on a daily basis. You have nothing but respect from me. <3

  • Kathy:

    Sometimes I find these blogs so hard to read and then I think about how much harder they must be for you to write and how living it must be even harder too.
    Hugs to you all xx

  • BW aka Barbara from Bostoncg:

    So sorry for all the pain this causes you two, physically, mentally and emotionally. I know it does not help to say try not to personalize Ivy’s pleas and emotional upheaval, but the shots and infusions have to happen. Try your mum’s idea of trying to have David or the big girls take turns.That way she knows its not just you. However I am not sure they could cope with Ivy’s reaction. See if the pain Dr./ clinic can see you sooner – if they have a cancellation that gives you enough time to make that appointment. Or reconsider anxiety medication temporarily. Get her doctors, especially the woman MD to help with the smallest dose that is effective, and ask how long to give it to her before shots. Is there any cold med or antihistamine that makes her drowsy? Could this be a choice before anxiety meds. Its a rotten alternative but it is traumatizing you both. You are so brave and stoic. Sorry this is tearing you up inside. Would you consider a short term med for you to take before you do procedures on her. Just to get both of you over this hump. Sorry , don’t mean to offend. It is such a tough situation. Try chocolate for you and a treat she can have after injections, preferably during a snuggle. Bless you both. XX Barbara

  • jeanie (226 comments.):

    Oh Tiff – you can cry in front of me any time you want to darling – it is hard and horrible and unfair – and as much as you know the validity and reasons and all of the good points, you are allowed to feel shortchanged by the whole situation.

  • Amy:

    I’m so so sorry. You are amazing.

  • PlanningQueen (11 comments.):

    Beautifully written post Tiff. Wish there was something I could write that would help make it better. xx

  • Janet:

    Tiff I can’t begin to imagine what you go through nobody deserves this in their life especially you and Ivy why can’t we say enough is enough and all is fixed xoxoxo

  • Leah:

    Such incredible angst, I’m sorry. I must say I am glad you finally had your husband be the hand holder and can absolutely understand the anger and resentfulness of the good cop/bad cop scenario. How would he like to give these injections on a regular basis? Of course he wouldn’t, and besides, if it wouldn’t be worse for her, you two would’ve come to that already. You seem good partners by far; this too will pass but in the meantime, there’s no easy answer. Have you thought of inviting Ivy to participate? Whatever she can do… ‘Ivy, would you be willing to put the Emla cream on? Pick 2 spots and we’ll see which works best’; (if she says no, ask ‘what would you be willing to do?’)… Can she uncap syringes or hold the saline or gauze or anything of import to make her feel part of the process. Pick which stuffy she’ll hold or which video she’ll watch or which sticker she’ll put on the chart… whatever. Just throwing ideas out. Sending good vibes your way from Vermont… Oh, and the shower is good for tears too.

  • Jennette:

    Oh Tiff I so feel for you. I found reading this entry of yours very difficult and want to reach out and hug you. I can’t even imagine…well I can imagine a little of what it is like as my son has been hospitalized twice with major infections and he always reacts like that for even oral medications let alone needles. The feelings you are having, I understand…even if on a lesser scale. That’s what makes it so difficult for me to read your words, it’s bad enough when I’m dealing with my boy’s orals….nothing works and I end up a sweaty crazy impatient emotional begging mess trying so hard to appear calm and in control. Us mums have no choice. It goes without saying that my heart is with Ivy, but it goes out to you just as much.

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