Ivy and Noah


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Not living normal.

The thing about having a child with immune deficiency or any chronic, all consuming illness is that  you never know;

you never really feel certain about anything at all

and planning something, even a week in the future, is like taking a giant leap of faith

but you have to.

We have to.

Yesterday, when the doctors were angry and huffy with me

and I them,

one of them said:

“with a kid like Ivy, you can’t live like normal, you can’t plan. Everyone should always be on high alert, just in case.”

but that’s not a way to live at all now, is it?

Waiting in the shadows for the bad to come -

always living with that fear.

It’s certainly not the way I want my other children to live.

I want them to make plans,

go to things,

be with friends

and I want that for Ivy too.

She deserves ‘normal’ as much as she can get it.

It’s an impossible mentality to have when at least one of us needs to work.

In a job like David’s you need to commit to being there

else you’ll lose your position

and therefore our whole family’s income.

You can’t stop the world while you wait for things to get better.

You just have to work around it.



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13 Responses to “Not living normal.”

  • Pixie:

    They are all eejits. You can’t live life on high alert * all* the time

    It would be exhausting for all concerned

    I live with a chronic illness but I try to keep life as normal as possible for my family. We do have to make allowances but I do the best I can to keep it * normal*

  • Glowless (53 comments.):

    Living life on high alert is a recipe for PTSD. So lovely that they’re encouraging that. Headdesk. xxx

  • Kathy:

    You all need life to be as “normal” as possible and best wishes from me for you to try to keep it that way.

  • Dianne Nunn (24 comments.):

    I guess we all try to live a normal life and that can be difficult. Our family is plagued with cronic and debilitating depression and it can be a daily battle to put on our normal face: but of course this is not nearly as devastating a situation as the one you face minute by minute. Keep strong. Keep normal.

  • Zelda:

    I guess it depends on your definition of normal :-) I would have thumped the doc that told you that. If you jumped at shadows every time Ivy looked ill you would never leave hospital. You are a trained NURSE, I think you more than most are able to provide normal.

  • SassyCupcakes:

    How stupid. Surely a normal life is exactly what everyone should be working towards with Ivy. You spend enough time worrying about her and caring for her, anymore time and I’m sure it would drive you both bananas.

  • Fiona (116 comments.):

    I prefer to make plans, even if they go out the window. Yes, it costs me mone, but I need to try

  • Jackie:

    Being aware of what is happening is very different to being constantly alarmed – awareness works for me and my PID.

  • Meg:

    Thinking of you, I cant imagine how hard it is on all of you… but one thing I see is the strong bond and spirit in your family, some families would not get out of bed, not continue on (which could be understandable) but you certainly make life a wonderful experience for all of your family. You need to be proud of that and realise that you are doing everything possible to give all the kids, including Ivy, and wonderful/normal life. xxxx

  • rachel:

    As you know we to live on edge, at any moment our daughter can become critical!
    But we have tried not living, just exisiting in this space and it was hell…. the kids were unhappy, as a husband n wife we bacame room mates n unhappy too and we all wondering why do we even get out of bed each day.
    So the thought was… do we let this family family apart, we seperate and continue a lie of misery, saddeness and worthlessiness.
    We chose to pick ourselves up, do our ver best to spend time as a family, as individuals and as a couple. To make simple plans of activities at home, and then in the community. To then maybe overnighters away, to weekends away.
    We know what to do in an event of emerency, we are never far from medical help if its needed… and if by some damn bad luck coming and the plans not being able to eventuate… we replan and attempt again. I think the feeling of disappoint is far less than the misery of ‘whatever, blah n living in a foggy dark cloud’ daily!
    We found a relaible friend who could help with school run if needed, we spoke as an extended family of how to support us as a family in events of hospital admissions, we found some adjusting to work committements, roles n tasks to make an admission slightly easier for us all…
    We chose to live!
    We chose to find a normal for us that allows time to smile!

    Hospital sucks ass!! And i told Ivy that yesterday…. but sometimes its the only choice to get to the top of the hill we were climbing, so we can sing out hooray when we get there!
    I know you feel gulity, hurt, frustrated, angry, upset, over it, tired and sick of the hospital life!! I really do!
    I here as an ear, a shoulder, a voice.. whatever you need, anytime xxx
    Sending you my big squishy tight hug .. mwah! xx

  • jeanie (226 comments.):

    Hugs to you and Ivy.

  • mum:

    What these doctors fail to realize is that Ivy is not an only child and irrespective of the accepted expectations that go with PID, living as normal a life as is possible and making future plans is a necessity for a family to maintain sanity and prevent resentment and depression.
    Ivy well knows how disruptive her illness can be, not only for her but for her family too.
    Surely then, it must be said that putting everything on hold and everyone holding their breath waiting for Ivy’s next incident, cannot be conducive to the well being of the whole, let alone Ivy’s better well being. Ivy needs to know that she can lead as normal a life as possible, too.
    All that can be done is to continue forward planning, make the best you can of each situation, accept the good with the bad, and take one day at a time.

  • Amy:

    Naive thing for that doctor to say. It’s easy enough for someone healthy to say, ‘you need to be prepared all the time’, because they have no clue of what that involves. Sometimes things don’t go to plan, but I am happy for you that you have always decided to make them anyway. Imagine all the wonderful things your family could have missed out on if you hadn’t. xx

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