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My hero..... Rss

Is my beautiful little boy, he amazes me everyday with his stregth and ability to take evrything in his stride.

His story starts at 26 wks gestation......
We were told something was seriously wrong with our little mans heart,ebut what? They didn't know, they had trouble determining exactly what was wrong, I had scans every week up until 39 wks when they sent me to Manash in Melb to see one of the top paed cardiologists, one sonographer asked if we would like to find out his sex to name him now as they didn't believe he would survive, we opted to wait.

THey induced me at 39 wks under the care of a huge team of DRs, we were prepared for him to be born not breathing...... his heart dropped dangerously low so they started pulling him out with forceps, I believed at that stage he was dead, I was screaming but no, first miracle, he came out screaming!.

He was whisked straight to the NICU, we were told constantly that his heart would stop at any time and that he would require surgery but they were struggling to work out exactly what was wrong with his heart, we got told constantly that this baby was very very sick but he drank more than the other babies and seemed to be very feisty, he had the DRs wrapped around his little finger and would carried - monitors and all- on their rounds every morning at 5am - just the start of his charming nature!
Finally after a few days the cardiologist came and saw him and said this child looks too healhthy to be as sick as they think he can go home......
First hurdle over.........

We went for regular checkup and he thrived, never once complained about being poked and prodded......

10mths ld I notice a lump in his neck, I rush him off to the hossy, he gets kept in and once again poked and prodded for days n end all the while smiling - even when they were putting drips in his arms and legs he never oncecomplained - they finally decide to rush him to melbourne to get it removed, Nil by mouth from 5am - 5 pm when they finally operate, not once does he cry for food, he amazes me with his strength I always believe he someohow knows whats happening and never complains.....

Fast forward to age 3.5 he starts passing out cold and not bretathing for a few seconds, scary for me, nope not for him, he comes to and continues playing as he was, again off to the DRs no its nothign they say as if it was epilepsy he would be tired afterwards, finally he passes out at home and cannot rouse him, in a panic I call 000 and then call FIL, by the time the ambos get here he out riding his bike!!!

Once again I take him to the DRs, they take it seriously this time and send him for an EEG, a 4yo by this time and once again amazes me, they offer to sedate him for it as he needs to stay still for the entire test (around 30mins - 1hr) but nope once again he sits in the chair and does not move, it would be hard for me let alone a 4 yo!!!

He is diagnosed with epilepsy, the next day we go to his cardiologist wh does his annual U/S on his heart, we get called into the office and he says "it isn't good" apparently his heart is not working properly and by rights this little boy shoudl be laying on a bed barely able to move, but no whilst the DR is telling me this he is playing Superman off the bed in the room!!! Within 2 days he is 2 different meds for his heart and one for his epilepsy (including a tablet he has to take) once again he never once complains, just gets on with it, I never have to force him to take his meds, sometimes he tells me he wishes they tasted nicer but thats it, no complaints, no arguments he takes them.

He goes great for a year, no fits and his heart seems good........ til Dec last year, he goes for his annual checkup, once again the DR is amazed that he is able to stand let alone function as his heart has deteriorated rapidly, get him straight to hospital we are told, we rush him over (clinic near the hossy) they have to increase his meds and try a new one to hopefully get his pumping better, he spends a week in hospital, in that time he charmed each and every nurse, the lunch lady and the other mothers one who has completely fallen in love with him and we still have contact with!! THey up his meds which make him feel really unwell..... how do we know he feels unwell? Only becasue he confessed when he accidently wet the bed, never once did he complain through the needles and 15 min blood pressure checks.

Since ghe has been home I have ahd to take him for 2 more blood tests and now at 5.5 he never once complains, he doesn't cry, he tells me they hurt but "thats just how it is for him" his exact words yesterday.

It breaks my heart and makes me cry for him when he isn't around, he has caught me numerous times sobbing for the little boy we may not see grow up and yest HE is the one who comforts me, he always tells me not to worry about him, he will be OK and I have no doubt in my mind that no matter what life throws at him he will be fine.

He told me the other day that the little boy who has bullied him ALL THROUGH kinder to the point of sitting on his head and being absolutely cruel is his friend.... why? "because Peter isn't like the other kids and people don't understand that, I want him to be happy so I wil be his best friend at school if he wants me to'

Oh I love my little boy so much, I have never been a believer in religion but I really do belive when looking at him that no one is dealt nothing they can't handle, he amazes me everydaywith his strength and character, to listen to him he like a little old man trapped in a kids body and believe me he has the chram of a little old man!!! He can have any woman wrapped around his little finger!!!

We are off for another checkup monday, maybe thats why I am writing this I don't know, I just need to let it all out and cry but I can't around here, Lukey just tells me to stop being a sook! LOL

If you made it this far, well done, I am guessing most probably didn't make it past the 1st paragragh!! Sorry about the length
Beautiful and inspiring.
It shows you that you shouldn't worry about being 3kg overwieght,that dreaded pimple that won't go away or if the sink is filled with last nights dishes.

Appreciate life! Its far to precious!

OMG Jess, its wayyy too early in the morning to be a blubbering mess!! I had goosebumps reading your story and I am also amazed by your little one.. Most adults and grown ups wouldnt be able to handle what your little boy has endured!! He is my little hero as well and I dont even know you or him!!

OMG i really am speechless!! I dont know what to say, except that he sounds like a real cherub...

GBH mate, thats all i can do from here!! Thank you for sharing your story with us!

Much Love,
R
Yes I made it to the end and now Im sitting here with tears running down my face.

What a special little boy. He is obivously still here with you all for reasons you may never understand. You and your family are blessed to have him in your lives.

I wish him and you all the best! I hope he continues to do well and continues to provide you and your family with the strength and courage you need.

Wow, my thoughts are with you and your little man. Kids are so resilient(sp) aren't they?

We cry for them and they tell us to stop lol!

Take care.
What a strong and beautiful boy you have there.
All of the problems and worrys that I have in my life seem so little after reading that.
Wishing you all the best with his next appt.
wow what an amazing little man! and i think he will grow up to be and amazing man! its people like this who change the world.

Posted by: McMum
Yes I made it to the end and now Im sitting here with tears running down my face.


Me too!

What an amazing little boy!

I hope your appointment goes well and so do future ones!
Posted by: Sette
Posted by: McMum
Yes I made it to the end and now Im sitting here with tears running down my face.


Me too!


ME THREE!

Jess, what a little charmer you have... you know what, i don't believe in religion either but i do believe in spirituality and that special little guy you have there has been here before!

Fingers crossed for good news at your appointment and thankyou for sharing, i think alot of us (well, i know i do) need something like this ever now and then for us to step back and look at life and realise some things just don't make the cut when it comes to whinging rights!

Aww that story is absolutely beautiful! I am also sitting here in tears of joy because he is so strong. Its amazing he is amazing. I believe if he believes that he will be fine that he will be he can feel it and you can too. This is a truly inspiring experience.

He is an extra special little boy Jess and you are an absolutely amazing mummy.

(((big hugs)))

xoxox

Posted by: Sette
Posted by: McMum
Yes I made it to the end and now Im sitting here with tears running down my face.


Me too!

What an amazing little boy!

I hope your appointment goes well and so do future ones!


Me three



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