Polycystic Kidney Disease

So no pictures on this post... 

We got a call today from the doctor to inform us that Connor has a cyst on his right kidney, meaning that, like his daddy, he has polycystic kidney disease (PKD).

As a mama this broke my heart.

No mother wants to hear that her son has a disease of any kind.

This is not the kind of thing that requires immediate drastic action.  He will slowly get more and more cysts on his kidneys until one day, hopefully late in adulthood, his kidneys will fail and he will need a transplant.

We knew Jimmy had it and that was one of the reasons we wanted to have children early so that when he requires a transplant, we will have children old enough to help out.

It's different though when it's your CHILD that has the sickness.  I'm his mommy.  I'm suppose to protect him from all bad and harm and I can't.

It's different to me with Jimmy.  He's my big strong husband and we are a team.  I am ready to go through the bad with him, I've accepted that.  Not with Connor.

I know that pain in the future for my baby is inevitable but it hurts to know what kind of pain.

Dialysis, transplant, anti-rejection meds, possible rejection, pain, side effects... the list goes on.

Polycystic kidney disease can also effect him in other ways.  

It is likely he will have high blood pressure and could have cysts on other major organs such as his brain, liver and heart.

There is currently no mainstream way to treat it, basically just wait for kidney failure.

All that to say, I tell myself it could be MUCH worse!  He could have something that is imminently fatal or painful for him his whole life.

Also, none of this takes God by surprise.  He formed Connor in my womb and knew before we had even thought of making Connor that he would exist and that he would have PKD.

It is not my job to tell God the best way to use my son.  Connor belongs to Him and if He wants to glorify himself through Connor's sickness then it is my job to be faithful through that.

I'm not saying it will be easy or I will like it but I will do my best to have a good attitude and remember that this life is not about me or Jimmy or Connor.  It's about God and his glory.

So where does that leave us now.

Well we go later this week for a urine analysis and blood work to make sure his kidneys are currently functioning properly.

I have written an email to a doctor doing infant research on PKD to see if he has any tips for us.

It means Connor, like his daddy, needs to drink lots and lots of water. :)  Yeah for going through dozens of diapers!!! :)

And it also means that we love our little boy just a little bit more than we did before because every family trial brings us a little closer together.

Thanks for listening to my rantings.  This post was probably more for me than anyone reading.