4 years

4 years since S. arrived .

I thought within a time memories would fade and trauma of that day would go away.

They didn’t- instead came back stronger as I’m due with S. brother in 10 days.

He will be brought to this world by c -section- like S., and it will happen 3 weeks before the due date, as docs are worried my big scars wont last full term.

Being back in hospital these days, bring back the scary memories about S. being taken away, and not knowing if shes alive, if she will survive, being left in room full of women with kids beside them while I was lost… Terrifying!

But you know what? It all doesn’t matter.

Why? Because she’s ALIVE and she’s doing ( consider we could have lost her) fantastic!

Is every day a battle? With regime of every day wash outs, prophylactic antibiotics for last 3 years, and other meds, catheterization every 3-4 hours to avoid UTI’s, with recurring UTI’s – even tho we catheterize S. so often . Vicious circle – it helps take the pressure of the full bladder and protect the kidneys, yet the same time – each time you insert a catheter – it’s a risk of infection as it’s an foreign body…

Yes its a battle.

But I gotta tell you. Its not mine or our battle. Its S. battle. And all we can do is support her.

And shes so brave…. I mean… its crazy if you think about it, how much she went trough and how resilient she is.

Last stay in hospital ( about month ago) was the first one S. was so conscious about it.

Shes older and understand more. She was saying every day she wanna come back home, that she don’t like AV , and shes better now and can we please go home…my heart was breaking.

And when we got home, each time she refuse take meds- I had to remained her how much she didn’t like to being in hospital, and how important it is to take meds and do catheterization– because if we wont- she will get sick and might end up in hospital….I hate doing it – but that’s the fact.

We have to stick to our routine to keep her well and safe. And all I can do is trying to explain why it is so important.

Its not easy. I’m fully aware it will get harder as S. grow old.

I’m not prepared for all the questions but I know – that when they will come, I will be honest and tell S. everything about it, and make sure she feels confident that no matter what condition she has – she is a VERY SPECIAL GIRL. Its up to us – parents- how we gonna go about it. I believe we owe our kids this support. It is our duty. I will try raise my girl knowing she was born with condition but she won’t be embarrassed about it. BECAUSE SHE IS PERFECT like any other kid.

She wont be embarrassed every time its mentioned, or feel like she’s anyway less than any other child because of it. I believe if we won’t give our children emotional barriers about it from the start, they won’t built emotional barriers about it. And accept it as the part of them selves to be managed as easy as other things like asthma or diabetes.

We were through so much over the last 4 years. Two years ago I wrote : ” Living in hospitals, made friends on every ward in 2 hospitals, and struggled so many times I lost count”. This year I can add : and we are welcome in Emergency room in hospital by name.

That’s our life …but can’t imagine it without S.

She’s my heart. A beautiful and super smart, chatty and creative girl, love singing and telling stories, very mature for her age girl, who surprises us every day.

Love you loads baby girl. Happy Birthday. Xxx

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