Forum home Toddlers & older children Children with special needs

Scared, gutted - is it normal ?

Hi girls- Archie has got post urethral valves & other kidney probs. I am gutted. We'll have to follow a special diet & constantly need tests. He could need dialysis & a transplant which is crap & even if he is OK'ish I'll spend all my life worrying about him.
My question is how the hell do I come to terms with this...II know I'm lucky to have him, he's the poorly boy not me etc but inside I'm breaking.... :\(


  • Simple answer hun is.....u don't! Although Luke's problems aren't quite the same, he will not really ever have a 'normal' life coz he will always struggle with his speech etc.

    Even thou I know there was nothing I could have done to prevent any of it, it doesn't stop me worrying how things will be for him thru school life, college (if he goes) & adulthood,

    Sorry couldn't really offer much in way of help......but am thinking of u hun & sending cyber hugs for u all xx
  • Hello, I'm so sorry for your news and although I cannot relate specifically as my son (so far) only appears to have visual problems, I just wanted to say that I think no matter who our child is and how healthy they are, EVERY mother worries about their little ones, I think it's a gut wrenching fear we all carry from the moment you read the results of your pregnancy stick. I don't know that anyone comes to terms with things like this, they just learn to get on with it, we must be strong for our children And when we feel weak places like this are great to release some of that emotion. I wish you and archie all the best, I know you will both be fine, look after yourselves and although it is hard try your best to focus on all that is wonderful in your son - I know it works for me. Take care X
  • Hey hun, of course you are scared and gutted it is totally normal, natural and to be expected. Im so sorry about this, and it will be hard but you must stay strong! Bless you. I found a link about kids with kidney problems here maybe getting in touch with other mums going through this could help? There is always lots of love and support out there, remember that. I really hope everythings looking better soon for you xxxxx
  • Thanks girls- feeling really guilty about thnking of myself in this. Also find myself pushing him away emotionally in case he doesn't make it- how stupid is that? Soooo frightened that I'm not strong enough to cope with it.
  • Archie was a star yesterday- was in theatre for about an hour & they cut his valves, stretched his urethra and circumcised him (OUCH). We came home today & he seems quite chirpy as long as we keep up the pain killers & food.
    The Dr's were fantanstic & although his long term future is unclear they were VERY reassuring that most problems would be fixable (even if he needs a transplant!).
    Feel so lucky when we realised we had the 'healthiest' lad there- Others had far more serious problems & were just getting on with it!
  • Hi,
    So glad to hear your day went ok-what a brave little man!!

    I agree with the others though-you accept, but not come to terms with. My daughter had her diagnosis 10 weeks ago today and after the first week or 2 I thought all was ok... until last week and now I feel as unstable as I did at the begining. I'm sure it will change soon-I hope!!

    I hope that it is as positive as it sounds in the future-and please keep us posted on Archie's progress!!
    Lydia xx
  • Thanks Tink- some days it all seems manageable & others I get panicked & think he's going to die....
    Def no more children for me - it's far too stressful !!!!!
    Hope your lo is OK x
  • Hi my little sister has congenital nephrotic syndrom. which she was born with by the time she was one she had both her kidneys taken out and on a dialysis machine for 16 hours a night. Once the doctors decidided she was strong enough to go on the transplant list she had one which sadly failed straight away due to a blood clot so nothing to do with the kidney itself which was really sad, she was lucky enough to get another transplant 6 months later which was successful she was 4. My sister will be 18 in August and her kidney is still going strong. Although my mum and dad still have to nag her every day to make sure shes drinking enough and taking her medication. My sister gets really angry when people tell her shes brave as she thinks she hasnt done anything.
  • Wow thanks for that shepherdyvonne (is that an indication of your profession?). It's so nice to hear positive experiences - helps to dispel the ugly worries I have.
    I did reach breaking point yesterday- small accident at home involving a chair & a cut lip & I burst into tears & sobbed for over an hour... feel guilty that I wasted so much time pushing him away but enjoying our bonding now even if it has taken a while.
  • lol no that was my name before I got married I could never remember another sign in name! If you ever need to talk or advice on something just email me and ill ask my mum as I know this is a very hard confusing time. And not really understanding what the doctors are saying 100%.
Sign In or Register to comment.

Featured Discussions