He's home.. For a month while he was away I held my breath and prayed when I woke for him to be guided to take best care of himself and gave praise and thanks nightly that he had a healthy day. On his last full day I sat at dinner with my other son silently celebrating that he made it a month without incident. Then the phone rang and he told me he had an episode. He was fine, but he had one.  He finished the night -having the best night of his life- went to his convocation loaded the car with his stuff and we're heading home. By this point I've come to terms that his "hardware" is doing what it's there to do and he's going to have these moments.. Then I hear a beeping coming out of his chest.

The next day... he's still beeping...He's also still feeling well and relaxing into being home, but I am a tripping head exploding mess on the inside because tomorrow we're off to the hospital to find out why he's beeping.  There is a reason, good or bad - there is a reason. But more than anything I just want it to all go away. I just want him to have the greatest life, free of these worrisome days.  I want him to be healthy and able to experience everything and have a long happy life. I want to throw a tantrum and scream and holler and bully all this away. Then I want to cry and hide and sleep it all away. But neither are real options. So I'll pray and lean and draw strength  from my Highest Power.

I'm crushed.  Yesterday the cardiologist made one of the cruelest comments for a parent to hear...."I don't want you to think that we have run out of options to offer you and are just sending you home to hang out on the couch" !!!! Are you fucking kidding me??? How do you put it out there with the kid sitting right there and no buffer or time to prepare to hear it?

My beautiful boy.  How can this be happening? How can we be at a point where doctors say these sorts of things? How can his life be at this point? I feel like I'm losing my mind.  I feel like the v-tach he went through this past weekend are the same "episodes" he has been having his whole life. So knowing that he has the ICD to jolt him back to center is comforting and that he had the rest of the day to be "normal" that he was able to celebrate his birthday with his friends that night ... all of that is good for me and I think for him.  But both of us hearing the doctor say that comment and putting out there another procedure that the best guy to do it is at the Mayo Clinic.. it shocked us both.  And I know he's struggling to handle it.  He's cuddlier, and more loving and gentler... He has verbalized that he doesn't like the idea that it isn't as easy as having the device and taking the meds and living his life, but that he gets this is his deal and he'll deal with it.  He just doesn't want to be boxed and told he has limitations and I'll punch anyone who tries to do that to him.

God is here. God is giving us strength. God will carry us through these deep waters... I am trying so hard to find comfort in that. That God has this under control and I should get that and free myself to enjoy each moment and day that I have with both my boys.  But as soon as I get there, slightly, the fear of days without him slams me in the gut and I break back down and allow the fear back in.  How do I handle this in the best way possible for Jake? For Joe? I feel like I'm the one leading the family by example.  Like everyone is looking to me to get their cue.

This is not a light and breezy load I'm carrying. God knows I'm strong...am I strong enough for this?

Today he is 15. Tall, beautiful, talented, bold and confident in his place in the world and making plans for how he is going to change the world.

Yesterday his new ICD went off right after an indoor drumline performance.  It was a relief and kinda funny because he seemed happy, kinda energized when he told me he had been shocked.  He had been running while pushing the timpani cart and felt the palpitations and sat on his timpani stool waiting for the ICD to go off.  It was like getting hit in the back, kinda scary but not at all what he thought it might be like.... the story can go on.  But the bottom line is my sweet little boy is turning into a man and the bag he carries into his grown up life is so very heavy.  Are you there God? Are you watching over him and helping carry his load or are you carrying him right now?

3 months ago he had cardiac arrest at a football game, was airflighted to the hospital and saved by a heart / lung machine.  3 weeks later he was home and catching up on school work. By the end of the quarter he not only is all caught up, but has a 4.0 GPA and has started back to 2 honor programs and the indoor program.  He's scarecrow thin and has a smile that will melt your heart.

And I know God is there because my boy is here with us.  God is Great and I thank Him for this most glorious Mother's Day present... my man boy ....