Home of the Four Trans

They do not realize this, but I think about and pray for them everyday. I thank the Lord for guiding me to them and sit in complete wonderment of how they’re able to do it.

I struggle with my child because I need to; his very helpless life depends on me being there for him. But, these doctors, they’ve chosen this path to struggle with me, for these sick children, out of choice.

I wonder how it is that they can leave their work at the hospital or in the office. I wonder, for those doctors with families and children of their own, how they can bear to not feel what a parent of burden feels as they witness us crying, screaming, angry, sad.

I feel almost guilty for imposing my life and our troubles on them when I know they have lives of their own, with family, significant others, children. I know this because they tell me.

I recall the electrophysiologist at CHOC telling me that it’s OK to be a self labeled crazy psycho mom. He told me it’s OK to be that crazy psycho mom because I have reason to be and that even when his own child has a cold, his wife freaks out. It’s OK to worry, to want to do something because it shows that we care about our children.

The rounding cardiologist at CHOC walked us down to the catheterization lab for Justin to have to his temporary pacemaker put in. She stood by my side and watched as I told Justin not to be mad at me–I knew he was from the way he looked at me. I burst into tears, apologizing to him, because I felt such remorse for putting him through so much pain. She has 2 boys of her own, I later learned from a cardiology appointment. She has a life and her own set of child rearing problems (as does every parent. We were comparing our 2.5 year olds). How was she able to stand it, being next to this raving mom and not think of her own child.

Justin’s pediatrician sees me like every other week or at least once a month in his office. Then, we’d bump into each other outside of his work, also.

The surgeons all witnessed a mother’s pain as they saw me sniffling and heaving my shoulders up and down in a corner during their rounds. They watched me stand by his side and sing to him, talk to him, prayed for him.

The attending ICU doctors sat down and consulted with us about every major issue from extubation to running a PIC line. When something went unexpectedly awry from their advice, do they blame themselves? It’s not their fault…

My child is fragile. But, there is something fragile about these doctors, also. They may try to distance themselves, emotionally, in order to protect themselves, to perform. But, they are just these human beings living with God-given gifts to help heal the sick. As humans, tending to the sick, they are bound to encounter human suffering in a way that must resonate within in their own lives. How do they have the strength to deal with this every single day of their working lives?

Here, I come to Justin’s cardiologist, Dr. Michael Rebolledo. I must admit I have a certain affection for him because he diagnosed Justin in utero. I don’t know if he realizes how important it was to us that he was able to explain Justin’s condition to us that early on in the pregnancy. We were allowed so much time to prepare–emotionally, financially, with the insurance, and choosing where to have the surgery. He explained everything with such compassion, giving us this hint of hope that others did not. Giving us the news really was the best news we’d ever gotten because it gave us an understanding and some hope.

Yet, every time he sees us at a cardiology appointment, he looks worried. By the third appointment, I started to believe that this was just his demeanor, very serious. But, no, I’ve heard him laugh. So, then, I thought, maybe he felt like every time he saw us he was delivering bad news. But, it’s not bad news because it shows an understanding…and hope…Then, I thought, maybe he was trying to relate to us by not allowing himself to be overly cheery when we had a child with this chronic heart condition, with death so close to the door. Perhaps I am looking too deeply into this, but I worry about him.

These doctors are like family to me though they’ll probably never come over for dinner, even if I ask them to (dare I risk rejection?). They will always hold a special place at my dinner table because they have opened up their lives and hearts to save my child’s.

Here’s to Justin’s amazing team of doctors.

I would like to express my appreciation to these doctors. The best I’ve come up with was thank you cards and some chocolates. We also catered lunch and dinner to the CHLA staff the last time we were there. But, how do we do more for them?

And, if there are any insider views about being a doctor and how patients and their families affect your lives, let me know. I’m interested to hear.

This entry was posted on Friday, April 25th, 2008 at 12:00 am and is filed under Heart Disease, Justin. You can follow any responses to this entry through the RSS 2.0 feed. You can leave a response, or trackback from your own site.