Tight Shoes

When we were in Philadelphia, there was a lot going on. I remember that Ivan and I tried to still always in our own small way exude kindness, smiles when we could, for sure little things because our own big things were taking over our own lives. I remember that well. There was one particular family who was there as long as Lucas was there. In fact, it's a very sad story. There were two sisters who were both healthy and growing normally. The oldest sister who was about 8 or 9 got a cold and somehow things turned from a simple cold to a bacterial infection in her heart. That's how we knew them. Lucas was in the CICU (Cardiac Intensive Care Unit) and so was she. I remember her name very well but will not use it, I'll call her Julia. Just because.



Julia's parents and grandparents were there constantly. Her grandfather in particular was extremely vigilant from what I recall. He was clearly to me, a very close second to the father as far as being in the lead of all the knowledge and contact with the doctors. He carried himself as the ultra patriarch. I tried lots of times to smile and say hello. I never wanted more. I had my own things swirling in my head. I was just trying to reach out, another human being going through the same thing with her child, just wanting to smile and say hello. At first I thought he didn't want to connect with anyone else (as he never looked anyone in the eye or spoke unless you were a doctor) because he didn't want conversation. Like me. I got that. But after a while, into the second month, it began to irritate me. Not sure why. I stopped trying to say hello to them, in particular the grandfather. I began ignoring them, if you can't beat 'em, join 'em and all that jazz. As the time wore on, our worries and Lucas' condition became more intense and I rarely spoke with anyone other than Lucas' nurse, his doctors, Ivan and the social worker at the hospital. Ivan is pretty laid back. He rolls along with most anything, nothing flusters him (except me :), and there isn't much folks can do to ruffle his feathers. --Julia's grandfather began to wear on Ivan and it was then that I knew, it wasn't just me. Let me explain further. There were lots of familes there. Some came and sadly left quickly. Without their child. Seeing this was surreal to me. I watched so many families leave without their children. Heard wails of grief and sobbing in Lucas' room and tried after a while to pretend I couldn't hear it. Pretend. Back then I couldn't see that he should be allowed to behave any way he wanted, as we were going through tough times, so was he, so was Julia's family.

One day Ivan said something to me that has stayed with us both for a very long time. He said that Julia's grandfather had tight shoes. I didn't get it. What do you mean? He was really saying that because he walked around so stoic and non smiling, unfriendly and all closed up, Ivan's perception that the nice old man's shoes were too tight all the time. That's why he couldn't smile. His feet must hurt. Walk a mile in my shoes and see if you don't act like I do, shutting the world out and making eye contact with not a soul I walk past. The mean grimace on my face is there because my shoes are too tight. I didn't even giggle. I just accepted, yes, his shoes are too tight. I knew they weren't. I just went along because partly, it seemed to make slight weird sense and also I think I was too tired to object and try to teach him a different way to think. And maybe, just maybe it seemed better to think that about him. To explain. We all need a little reaching out don't we? He didn't want it and I was rebelling. So let it be written, let it be done, the grandfather became Mr. Tight Shoes.

Julia passed away about a week and a half before Lucas did. I remember being in a place where I was wondering if it was time, if Lucas was giving us signs and signals but trying to ignore them and it was a real emotional battle every hour of the day. Julia and Lucas had been there the longest since we arrived and when she died and I saw all the commotion, the family falling on their figurative knees, then the empty room, I was shocked. I think I wrote about it way back then. I didn't think it possible. She just had a cold. How could this happen? I believe I began a real rant on God at that time, if I hadn't begun one before. Anger and more anger, even though her parents and Mr. Tight Shoes still wanted nothing to do with anyone, I could only focus on the little girl. And her sister.

Why am I telling you this? Well. Since then, Ivan and I have often said out loud, "that's just the road we walk, that's how our life is, always so hard." Different things life has handed us now and again, you know, just normal things that set you off track. One time, a couple years after Lucas died (now it's been five years to put it into perspective) I said to him, "Are our shoes too tight now?" and I didn't like it. I stopped saying it. I might have thought it out of habit every now and then but didn't like even that. Seemed like negative thinking but I couldn't really put my finger on it. Now I see that out of ignorance can come bliss.

I will never again even think something like that. I am replacing my negative 'why me' thoughts with good ones. I will tell you why in my next post.

One year when we went to the Candle Lighting in Philadelphia, the year I spoke in front of the crowd, we saw Julia's family there. The grandfather's shoes were still very tight. I hope one day they loosen up. For his sake. So Julia can know he is happy again. I wish for you loose shoes and a light heart. I am trying to adopt these same ways of thinking. It's not easy. Not by a long shot. But it's worth it. I think Lucas probably would agree.

Jenn