Its not easy to be a parent.

Its not easy job to be a parent.

Its even harder when you parent of a kid with congenital malformation.

Parenting a child with any type of special needs changes your mind.

Its like a different world.

Funny enough I only realize that at times when I hear other parents complaining about their kids or how tough it is because – for example- their kid wont sleep/ eat certain food/ cry a lot/ etc – about stuff that would never cross my mind, as my worries were completely different. I worry about the whole spectrum of malformations that S’s. had when she was born, about all the surgery’s, the care after them, about the damaged kidneys and incontinence, about S’s. future, etc, etc.

Also when I’m asked a question – “how are you guys coping with it?” I don’t think about it. I /We just DO.

While ago a great friend of mine told me : “ Honestly I think you are a trooper. I don’t know how you cope cos my little friend S’s. been sick a lot more times than my baby and I’m seriously struggling!!! You are brilliant”

I was touched and truly surprised to hear that for two reasons :

1st: I don’t see myself as super strong and my life as one big struggle. OK, we had a tougher start and had to learn way more stuff than we expected, and deal with more stuff than any other parent but its our reality so I don’t look at it as something special (not anymore anyway).

2nd : truth is, when you face a sick kid, even the toughest man is humbled.

I mean it. I have one memory from the beginning of our journey.

While S. was in high dependency ward I was sitting with her 12- 14 hours per day, and sometimes I was watching parents coming to see their little ones. And there was that poorly dressed young man, A very well dressed (bussiness) woman and me ( just an average girl) in the middle. I’m not saying the outfit determine who you are but it was only way to see the difference between all visitors.

And I’ll never forget what I thought back then: It doesn’t matter who you are and what you have.when your kid so sick we all FEEL SAME HELPLESS and USELESS and depending on doc’s and all you can do is wait and pray . We all had the same look on faces : scared, worried, …

Recently I came across an article on the internet:

“Congenital conditions can be repaired surgically. All the medical interventions parents of medically complex children learn to administer can keep their children in a state of optimal health for their conditions, but all of that can change at any moment. In the blink of an eye, things can go from calm to complete disaster. This is why we’re stressed out and why we can’t completely relax. “


Its so true.

I’m happy at the moment with S’s results – kidneys are under control, preventing UTIs, minding the diet, avoiding nappy rash, trying to manage bowel to achieve “social continence” etc.

Last visit with our dear PROFESSOR Mortell ( once again congratulations!) went so well, like never before. I didn’t have a long list of questions – like i usually do ( Sorry Professor Mortell! ). No need for extra tests or scans, no UTIs since July 2014, literally best control visit ever ( that is from day one – so 32 months), but…

There is always a little red light in the back of my head and it flash each time something goes slightly off the routine. Like if the catheters sample is cloudy, or if S’s Skin goes bad, or if there is no bowel movement, etc.

In my head I have at least 3 next steps or scenarios, what this can mean and what we have to do if its true.

I have a small travel bag hidden under my bed with essentials (medical history folder, set of PJ’s, nappies, phone charger, tooth brush, few toys, book) ready to go – IF we need to go to emergency room , to hospital.

We live our lives day to day, without thinking about how different or tough our parenting is, but the truth is – it is different.

I’m not saying the parents of healthy kids have it easy. I know everyone has their own challenges, dramas and scary moments.

Author quoted by me earlier, says another true line:

“If we seem a little overbearing, overprotective or paranoid, know it’s for a good reason. Just as any parent dedicates his or her life to caring for his or her children, we’ve dedicated our lives to caring for our children, but what that requires of us is different.”




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