Invisible Illness Awareness Week

(16-22 October 2016)

All disabilities come with worry and challenges and stress and so on.

Equally so for the invisible disabilities.

Even though our child looks perfectly healthy, and she does!

But she will have to deal with and manage a condition for the rest of her life. And we as parents take on that disability too. We have to make it part of us to help her learn to live, love and laugh with it. To overcome it.

What All Parents of kids with EXTRA CHALLENGES (such as rare conditions and disabilities) Would Love to Hear

Did you ever think of that?

When I do it’s easier to say what I hate to hear. We get to that later 😉

But I’d like to give a though to positive lines and I come up with this:

  • You are not alone

  • You are superhero ( even tho I’m not. I’m not a super mum, not even close)

  • It’s a 24/7 job, I admire you

  • You are so strong

  • Don’t be so hard on yourself

  • I’m here if you need yo talk

  • Being a parent is hard but being a parent with extra care is extra hard

  • Haven’t talked to you in a while- how are you?

  • I want to learn about your child needs (and extra care) so you feel safe leaving her with me

  • We cleaned the house wile you were at hospital

  • I’m taking my kids to park/play ground/etc. would yours like to join?

And few more I found in random pages:

  • Lets meet for coffee

  • Just wanted to tell you I have been thinking about you lately

  • Even if you can’t come tonight I wanted to invited you out tonight

  • Don’t compare

  • Don’t let the typical parents get you down

  • I know you are over whelmed, but you are doing a great job

  • Life is tough but so are you

  • You got this

  • And my favourite one: Play date? my kid is asking to play with your kid – I will bring food 🙂

Main reason for this note is – I really wanted to vent and share with you a list of  Most annoying (sick of them) LINES I ever heard

1: She looks so normal – like any other kid.

or : You can’t tell anything is wrong with her

  • Yes, I know she does, not all disabilities are visible but it doesn’t mean they are gone.
  • Not only it reaffirms that something is “wrong” with S. but it also suggest that “normal” is the only acceptable way to appear. I refuse to use term “normal” because to us S. is normal.

BTW – The other thing I often hear is how gorgeous and cute S. is, as if that is somehow incompatible with her disability

2: Surely your kid is OK now, she had so many surgery’s.

  • Yeah cos the fact we have none planned at the moment means shes a healthy kid. (nope).

3: The medicine moves forward so fast these days they will come up with way to fix her.

Oh God, where do I start on this one…

  • yes, its true – medicine goes forward but everything they could so far they did.

  • She was born with malformation, it might be “fixed” on some level but it still affect her life big time

  • also I use to plan my life way ahead and I end up in labour at week 33 ( straight from work and without even packed hospital bag), So right now I live my life day by day, and would rather be nicely surprised than keep dreaming and be disappointed

4: You have to stay positive.

  • Oh really ?? … because I’m not??

5: When I talk about childbirth and being dismissed : yeah, but you had it completely different.

  • No – not really. I felt the same pain and was as much scared because i didn’t know how long it will hurt and if I will survive- like most girls with first baby. Yes – it got WAY more scary after on when doctors didn’t know how to tell me , or whats worse when they didn’t really know whats wrong OR if she will survive. That’s when it got different. Until then I was the same Happy mum to be as you, I’m not worse than you. And I realise people say that because they don’t always want to hear about sad story or want their nice day ruined by that.

6: When someone asks you hows your baby – and when you say something like “ shes fine but we still struggle with this or that”- and then give you “THE LOOK” or as I call it “ the face” that says – I actually don’t want to know how is she or how you coping with it.

  • its enough if I reply “shes OK.

7: When you tell someone about the stuff you have been trying and it failed, and you are focused on it , just so much all you want is it to start working , you are obsessed with it (no matter on what subject it was- broken skin on nappy area or kidneys infection) and person who’s listening says “BUT” and trying to pick just one line, a foothold – that something is good, just to finish conversation about your problematic child.

8: Maybe you should try some herbs or cranberries (or anything like that) instead of stuffing your kid with antibiotics/ enemas/ other drugs.

  • Yeah, cos its my choice to stuff my child with prophylactic antibiotics for last 3,5 years and like I don’t know it affect other organs, and like I’m not feeling bad enough S. depends on them soooo much.

9. I know just how you feel.

With all respect for your good intentions- you can’t unless you have been through the exact situations as I and other parents did, there is no way to know just how we feel.

As much as I can understand you are trying to be nice – such a statement doest not make me feel as though I’m surrounded by people who understand. It reinforces that in fact there is very few people who truly get it.

10: I don’t know how you cope with all this

  • I cope because I have to. And that’s what anyone would do.

While ago I thought of all this. I realise that most people don’t know how to react/ act when they find out your child wasn’t born exactly healthy.  I refuse to use term “normal” because to us S. is normal.

She just struggle with a rare condition and how it effect her life. And its her battle. Always is and will be.

We just here to support her and make sure she never feels any different than anyone else.

But after few meetings that left me so upset and feel like I’m worse, just because my child was less lucky, I come to decision I wont see and try to keep them “friendships”. I don’t need this stress and negativity in our life.

I would rather be surrounded by few, but kind to us people.

I have not time to waste for ignorance. I wont force myself to do so.

Sorry if it sound trivial or even harsh. But I’m sure you know what I mean.

To be continued in the note “De privatising condition”

P.S.

To finish this note in positive spirit here is something that sums it all:

“Parents of special needs kids need encouragement, not pity. We are proud of our kids. We celebrate smaller milestones than you will for your kids but they are just as precious to us. We love our special kids just as much as you love your kids. We do not often feel sorry for ourselves. We are not ashamed. An encouraging word means so much to us, probably more than you will ever know. “

(source :https://www.autismspeaks.org/blog/2014/09/02/15-truths-parenting-special-kids)

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