chronic kidney failure

[Malsmum]

Hello, I wonder if there's anyone out there who can help me! My DS will be one in a couple of weeks, and I'm still having problems adjusting to a diagnosis of chronic renal failure which we got when he was 13 days old. The long and the short of it is that his kidneys didn't develop properly, and he is going to need a transplant. At the minute he's doing fine and just has to be monitored, but I know that he's going to have to go through a transplant, take immunosuppresants for the rest of his life, and all the other possible complications . I'm so sad and worried about it, feel cheated somehow (how horrible is that of me), and worry about his future and happiness. I know that there's no point in asking "why him" and thinking it's not fair, but I find it so hard.

He is such a happy little boy, hitting all his developmental milestones, but I constantly have this black cloud at the back (sometimes the front) of my mind. He could need a transplant when he's 2, 5, 10, 15........... it's just not possible to say.

I know that I need to cope with this for his and my sake (and DH's), and I wondered if anyone out there had been through anything similar and had any words of wisdom.

Thank you.

[2shoes]

sorry can't help but bound to be someone who can
so bumping it for you

[Malsmum]

No other children - have an appointment with genetics to see if we had any others they'd be likely to have the same thing. He is v sweet, and I know I'm so lucky to have him, it's just a bit tricky to feel like that all the time!