I've always wondered...

When Lucas was in the hospital, for the first month to month and a half, I would literally not leave his side. I never went home. Of course, my husband was right there with me every day in some form or fashion (whole day/half day/partial day depending on day of week or work or whatever) but I only got to see the Oldest at first when he came to visit; when his Daddy brought him. I finally was pushed and prodded by my husband and the social worker to go home. For one night. At first. It started like that. One night. The whole way driving from that hospital, leaving my husband behind with Lucas, I cried and cried. I felt so guilty. I knew the Oldest needed me and that I needed to be home, just to be home and think and get away for a minute but I was so pulled back to the hospital. In the end, the healthy thing to do of course was what I did; go home with the Oldest. I knew I'd be back in the morning. I could almost relive it exactly all right now, moment by moment. It's funny, when you remember things that are burned into your brain, your memory, things that matter like that, it's like it just happened. You can re live it because it just happened and it's so familiar to you because you remember it all the time.....it's almost like your other life. I do have two you know. Well, maybe you didn't know. Regardless, I got the idea that night, to record the Oldests voice. In a conversation with me. So I could go back to the hospital and replay it for Lucas. He absolutely adored the Oldest for all of his time at home, all six months. Adored him. I thought, if Lucas could hear his voice whenever I played the recording that it would spur him on, make him want to get better (when all along it had nothing and I mean nothing to do with what Lucas wanted but I didn't get that then), and make him stronger.

I did it. I recorded the Oldest's sweet little three year old voice (back then). Someone at the hospital had let me borrow an old time tape recorder and that's how I did it. To this day, I still have that recorder. Couldn't bear to give it back. I remember the first time I played it for Lucas. He was sedated of course. He could do things like squeeze fingers, he opened his eyes now and again, sometimes with blank stares, sometimes right at me, he did random things like that which I hung every hope prayer and dream on by the way, but I digress, he was of course, sedated. When I played that little voice on the recorder, Lucas stilled. Stilled like I thought he knew who he was listening to and if he stilled more, it meant he could soak up his brothers voice more. And as I watched his face, studied it while the recording played on, two tears slowly fell down his face. I remember the air getting sucked out of me and sobbing right there in front of him. He responded. I coudn't tell what he was feeling except for those two tears. I thought that he was saying, "I miss you all so much and I don't want to be here, stuck here, with all these things in me and where is my "Oldest" anyway?" Of course, me, with all the drama, seeing those two tears, that is what I thought. And it killed me.

That whole episode spurred me on to hit the doctors with a whole new set of more pointed questions, 'is he hurting and we can't tell? can he really hear what we are saying and want to respond in ways only he can? is he hungry? how can he not be? why is he crying tears? Oh they tell you what you want to hear sometimes I think. Of course I think they are bound to some sense of honesty but I also think they could see things we could not, especially before we knew that his corrective surgery was botched and that his heart condition of tetrology of fallot still existed, but now worse that before the corrective surgery. I think they maybe were trying to be humane and not tell us everything. Of course I could be wrong, I don't know. When a patient or patients parent wants to know real questions like that, it means they are headed straight for the real nuts and bolts of it all and they want real answers and they don't care if the real answers might hurt them, they still want the answers. Maybe in some ways the doctors tell us the easy version to help avoid US the pain of what the real truth might be.

Greys Anatomy last week. George's dad died. While he was in the hospital, they had a round table discussion about whether they should let him go or not. He was in a very sedated state and unresponsive after surgery and the doctors realizing that cancer had spread throughout his body. Do you know how many round table discussions we had? Some literal round table discussions and some figurative ones where all doctors were present and we had these tough conversations but no round table was physically present? SEVERAL. Not just one. Lucas will die tonight. Prepare yourselves. Call your families. He won't make it through the day. It'll get much worse before it gets better. He's very sick. Blah blah blah. Back to the topic. George's brothers said to George (who is a doctor himself), "what should we do what do you think?" and George says this, long pause then "He's not himself, he's hurting, he isn't Dad like this" and that was it. That moment while I watched that show, stood still for about three minutes it felt like. All the memories which were already flooding my brain just stopped. I mean, I've always wondered you know, I did ask all the questions to them back then, WAS HE HURTING ALL THOSE MONTHS? Why did he cry random tears with no sound? Should I have seen the signs so much sooner? Not asked him to fight so long? Jesus. So I'm thinking then, while watching this show, yes, it must be true. George is a doctor, he's being real, he knows the real truth, he's leveling with his family. Not a reason in the world to BS his mom or brothers, he says it outright, 'he's hurting right now'. OK OK OK. So George's dad and Lucas are very different. Georges dad is an actor on a show and it's not real. Lucas was a baby born with a heart defect and he was very real. But the situations, they seemed very very similar. I know they try to be true to life on these medical shows. They do. So now I'm wondering, after all this time, did we do the right thing? By asking that little boy to fight for so long? To believe in him? To ask him to climb that very steep mountain of his kidneys failing, lungs failing, and all the numerous infections and fight it all? I mean seriously, how delusional were we? And the pain he must have been feeling? Like the time the doctors in Philly literally flew in the room for the millionth time, threw a huge blue cloth over him, cut a hole in it and right there and then cut a hole in HIM to fix something that some monitor outside our room was telling them something was wrong wrong wrong? Do you think he felt THAT pain? Oh yes. I know he did. And I stood in the corner of his room crying tears like the Niagra Falls that I've never been too. What the hell? I remember that moment crystal clearly. I was there alone. My honey was here, back home with the Oldest, forced to live life to get a paycheck and try to fake a sense of normalcy for him. I was thinking, is this right? What are we doing? STOP STOP STOP! But I let them. I mean, they were saving him after all, right? Jesus. What was I doing?

You see, I've always wondered. What was the right thing? What WERE we supposed to do? I guess it really is irrelevant now. What's done is done. He's gone. He's in Heaven, exactly where he's supposed to be. More safe there than he could ever be here. If I could only stop re living. If I could only stop beating myself up. I don't think that'll ever happen. Too many things to noodle through. So much happened that I've never even said out loud believe it or not. So much.

I pray for peace. I pray for a sense of calm and less anger. This is a good prayer. This I pray for.

Jenn