“I WANNA BE NORMAL LIKE EVERYONE ELSE”

What does normal mean?

Did you ever think of it? I didn’t but subconsciously I never liked this word. Rebellious as teenager – try avoid to be like everyone else – loved punk rock 😉

I think is best to start off by explaining what the world believes “normal means”. I look it up the word NORMAL by Collins dictionary:

“normal in American- adjective

1. conforming with or constituting an accepted standard, model, or pattern; esp., corresponding to the median or average of a large group in type, appearanceachievement, function, development, etc.; natural; usual; standard; regular.

2. Biology: occurring naturally  normal immunity (…)

Medicine and Psychology

a. free from disease, disorder, or malformation; specif., average in intelligence or development

b. mentally sound

SYNONYMY NOTE:normal implies conformity with the established norm or standard for its kind [normalintelligence]; regular implies conformity with the prescribed rule or accepted pattern for its kind [the regular working day]; typical applies to that which has the representative characteristics of its type or class [a typical Southern town]; natural implies behavior, operation, etc. that conforms with the nature or innate character of the person or thing [a natural comedian]; usual applies to that which conforms to the common or ordinary use or occurrence [the usual price]; average, in this connection, implies conformity with what is regarded as normal or ordinary [the average man]

OPPOSITES:  abnormal, unusual”

Since S. was born we treat her as normal (for lack of better word I’m going to use this one). I mean – like she is any other child, as only we knew how much extra care is involved.

Until her brother arrived she didn’t know there is anything different – how could she? – she had all extra bits (first stoma bag and vaginostomy bag, then catheters and washouts, meds , etc) since she was born. Only when S. little brother arrived home (and she was 4 years old) she noticed something is not exactly like she knows and she asked “ Is it just girls being cathererized? Boys not?”.

At this moment we realised we missed something. Something like a conversation with S. about her condition. Why would we do it earlier?  For us she is perfect girl.

Also, personally, I always had a problem how talk to small child about something as complicated as her condition, without using this complicated medical lingo that took me while to understand…. How to do it? I didn’t know. So there was no conversation.

I will never forget the shock I got when I met another mum of IA girl, who told me she tells everything to her baby H. I couldn’t believe it. HOW? Her answer was so simple…I’m laughing at myself i didn’t think of it myself. So my friend – K. tells her daughter – H. That she was born without a hole in her bum. BOOM! Simple, right? Yes it is. But while you are in the middle of it – its not. Or maybe I over think it. I never told K. How much she inspired me. You DO!!You rock girl (I know you read this).

So after S. asked that first question we had to think of way to explain to her that not all girls had to be catheterized and in that moment I knew there was no way – she will find out she is special. That there is a huge reason why we bother her with all this extra care. But how to do it without making her feeling that she is different? Without making her feeling bad?  And we are getting here to main reason that make me writing all this today.

Conversation that I’m about to bring up here I had with S. while back ago – 7.12.2017

I couldn’t get my head around to write here about it. But I think I’m OK now and I’m ready to share. And hopefully it will help others.

It happened when we where going to bathroom to do bowel washout. Back then S. was fighting it every day  (http://www.cloaca.eu/tricks/) but that day she was more upset and wasn’t going to do it.

One day she suddenly realised how her normal isn’t the same as everybody elses normal. Or maybe it wasn’t that she suddenly realised but maybe that day she snapped.

She said:

“Why do I have to do this?! I don’t like doing it.

I WANT TO BE NORMAL LIKE EVERYONE ELSE.”

It was first time ever she said such a thing so it took me by surprise. Not like a didn’t expect that sort of conversation- I just wasn’t ready for it. So what I did?

I told S. I will be back in a minute, I turn around I went to bedroom to have a cry.

Yes, I did leave her. I didn’t want her to see me like this, that it’s too much for me in that moment. After outburst of emotions and tears – into pillow, I came back to her, cuddle her and I said:

“When you were a tiny baby, when you were born, you were very sick, you nearly died. Professor Mortell ( she loves him) did an operation and he saved you. Because you didn’t have a hole in your bum. And then when you grew up a little bit, we went to England and you had more operations and other amazing doctor made a hole in your bum so you can poop. But it doesn’t work perfect- so we need to help you a bit and that’s why mummy puts water in there to wash all the poop out.”

That was the very first time I spoke with S. about it.

Since then I bought a lots of books about anatomy with pictures where i could easy show S. where is a bowel and how it works, and about the kidneys, what they do, where is a bladder etc. We had a few more conversations and each time I add a bit more to it , like – why she needs to be catheterize- “Because your kidneys and bladder is a bit sick and we need to help you pee”.

I don’t remember who exactly advised me that (psychologist) but I remember I was told to never ever say she is sick. If I talk about her condition – talk about the parts of her body that don’t work well – say they are sick. So that’s why S. know she needs to be catheterize and taking medications – because her kidneys and bladder are bit sick. We use medical terms like bladder, kidneys, urethra and vagina, so when she has a pain she can tell us exactly where it is.

Recently I was asked by other cloaca mum “Does she understand it at all?”.  I don’t know exactly. S. knows she was born without a hole in the bottom and she can’t go to toilet to poo like other kids (without enema) , she can’t go to toilet to pee like other kids so she needs to be catheterized. She knows her bladder and kidneys are sick so she need to take meds every day, 3 times a day. And sometimes she needs extra medications like antibiotics and she knows it means she have an infection.

That’s what she knows for now. Not sure what else we could tell her about her condition, in non medical language.I think we will ad more detail as she grow older.

In one of the conversations about her wanting to be normal, where I always tell S.  that SHE IS – she just have sick kidneys and bladder, she explained to me she meant she doesn’t want to do all them stuff (enemas catheterizations,etc.), she wants to be able to play all the time like other girls in her class, that’s what she mean by “being normal “.

And I totally understand. I wish that for her too. I wish she could enjoy being a small carefree little girl like other kids, I wish she wouldn’t have to go through all them surgeries, long weeks in hospital wards, check ups in hospital and every day extra care. But I can’t change it. So I’m focused on making sure she still can do everything, like other kids, as much as possible. That she is not missing much. Even though the is time restrictions with catheterizations times. (http://www.cloaca.eu/social-life-5-year-old/).

I said that before and repeat again. It’s not my battle. It’s S.’s. I’m here to support my baby and make it easier for her. I’m doing my best and I will always will but on the end of the day it’s her condition and her life with it. There is loads ahead of us but we will manage as we always do. Day by day. Today is today. There is nothing I can do about the past and I will deal with tomorrow when it comes. Regardless of what it’s going to be.

And I tell S. every day I LOVE HER MOST IN THE WORLD. JUST THE WAY SHE IS.

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