The heart of my son

I have to admit here that I am struggling... this blog is supposed to be about losing weight and instead it's turning into a place to share thoughts and vent and ultimately share my dreams, hopes and failures with the nameless people who happen by this blog... or maybe no one reads this and it's simply an online journal... I am not really sure, nor do I really care. I need this, and today I find myself desperate for a place to write candidly about my deepest thoughts and fears.

So, here I go... brace yourself if you really are out there reading this.

Early this morning Tim and I got up, woke up the boys and headed out to a really early ECHO appointment for our 2 year old (Josh). The expectation for the day was simple... it was going to suck, it was early, the boys would be tired and probably cranky. We would have to have Josh sedated for the ECHO which means a grumpy young man who walks around like he is drunk for the morning. Then in the afternoon we had a dentist follow up at the same hospital for him. (Poor Kid). So, the day was going to suck, but ultimately we expected the news to be the same... "there has been no change, I will see you in a year for a follow up appointment and ECHO."

The day did suck... Josh fought the drugs, he screamed for an hour before falling asleep finally in exhaustion. The news however was not what we had been expecting. Josh's heart is enlarged beyond what they were expecting. The valves are working too hard and the ventricle is growing. They want to see is in 6 months to chart the growth, the doctor talks to us about a second open heart surgery.

My mothers heart hurts and my stomach feels sick. While I knew he had heart problems, there was a part of me who looks at my sweet, smiling, active little boy who sings "eee iii eee iii oooh" before bed at night and thinks he is the most perfect, healthy, happy child that ever lived. There is a part of me who was in denial, a part of me who grasped onto my belief in miracles and wanted to believe that nothing bad would ever happen to him again. The doctor stole that from me today, she took my optimism (even if only for this moment) and broke my heart.

When Josh was 6 months old we gave him over to God, we sat in the chapel at Sick Kids and told God that we knew that he was not ours, that ultimately he was Gods child and we would let him go if we had too. God gave him back to us the very next day in what can only be described as a miracle. One moment our little baby boy was blue and lifeless and then they tried a trial procedure and it worked, he turned pink for the first time in his life. He began the road to recovery and he really hasn't stopped since. He is smart, strong, active, and mischievous. He is wonderful.

So how do I face going down that road again? How do I let myself think of the possibility of him lying lifeless in the CCU yet again? Does God give miracles only to take them away again? Have I done something wrong that needs punishing? Now in theory I know that the theology of those thoughts is wrong, that God loves my Joshers even more than I do (hard to believe but true)... but alas I am human and my heart has questions that my brain isn't in the mood to answer tonight.

My sweet son, who is lying in his bed sound asleep and clueless to the broken heart inside of him, has no idea of the life ahead of him, of the pain that he faces, and as his mother I have no way of protecting him. I can't make him better, there is nothing I can do to help him. I have always been able to hold him when he cries but I can't make him not cry. I am helpless. This is where I know I need to give him up to God (again)... but I have had him for 18 more months that I had before. I have gotten to know him better, I have felt his arms around me, I have heard his sweet little voice, I have known his kiss, felt his hand cling to mine and seen his sweet smile and big toothy grin. How do I let go of the desire to make him whole? How do I let go of the desire to control the outcome? Does there come a point that God says "You have had all the miracles you are going to get?". Worse, is there a point where I give him to God and God doesn't give him back? How do I do this? How do I trust God with the heart of my son?