Caring for a heart baby

I love my kids more than I can ever express.  The hardest part of that love is when they get sick.  My youngest, Cougar, is 3 and he had open heart surgery at 3 months old.  He's had struggles ever since to reach normal milestones like walking and eating by mouth.  Right now he's in a special class at a public school that provides speech, physical, and cognitive therapy for 3-4 year olds.  Just a few days ago, I took Cougar to a regular appointment with his cardiologist to check on his heart.  I knew he had a moderate leak in his mitral valve, but that day we found out the leak had gotten worse.  This is bad news because now he will need another open heart surgery to repair or replace the mitral valve.  The doctor told me it will probably happen either this winter or next summer, depending on how Cougar responds to the increase in his medicine. 

Needless to say, my husband and I were devastated, and everyone else we know is giving us all the support they know to give. I also feel guilty because it is my gene pool that the heart condition comes from.  I have a leaky mitral valve myself, but it's only a small, manageable leak.  I've had 2 open heart surgeries- one to repair ASD and the other to repair cor triatriatum.  My mother and grandmother have also had surgeries due to ASD.  My older brother, whom I never met, died at 3 months old because the surgery to fix his coarctation of the aorta did not work.  I thought it was bad going through surgery myself, but it's a million times worse when it's my baby.  I am essentially rendered helpless in the face of this boo-boo that I cannot kiss better. 

A mother's love is all-encompassing and never ending.  I will do what I can: I will stand by Cougar's side, take care of every little need he has, and live in his hospital room until he is ready to come home.  I will let him know I love him, and I know my husband will, too.  We will give him our encouragement and the familiarity of our presence. 

This is going to be a very stressful and tiring several months while we go through this process, and I will probably break down several times.  I just can't handle the reality of my baby, who will be 4 when he has this next surgery, going through this again.  Just when we think he's gotten better and he's reaching milestones and acting like a regular kid, he has a setback.  I would take his place in a second.  He is such a special little boy, funny and sweet and precious.  I hate it that bad things like this happen to kids, and I hate the injustice of it all.