I don’t know exactly when it was but I began to refer to Lucas as “My Lucas.” It was such a natural progression that I can’t really pinpoint when it happened either. Someone would ask what I was doing and I would indicate, I needed to take pictures of “My Lucas” today and they ultimately knew exactly what I was talking about. Lucas was shaping me into a better photographer and all around better person. Anyone that really know me, will be able to tell you that I generally have one emotion and that’s happy. Nothing really touches me, nothing moves me, I generally just keep to myself and am “unmovable.” Except when Lucas is in the room. When he is in my presence, I am able to experience so many other emotions. Bizarre, I know!
Teresa so graciously allowed me into her little family and I allowed them into ours. I took Christmas pictures, was invited to birthday parties, attended karaoke parties, was there for laughter and tears, I was honored when Teresa invited me to her wedding not only as a photographer but also as a friend. I was called when Lucas lost his first tooth because this was a milestone Teresa had waited endlessly for. Now besides the contagious crinkle nose, drool-y smiles I would get upon saying his name, I would get to experience the gap tooth smile we had so eagerly awaited.Lucas had his seventh birthday party at a bowling alley and I saw so many smiles and so much excitement from Lucas. It was such a wonderful day and again I was so blessed to be asked to join them on this special day.
Now to the part I really don’t want to discuss. Lucas isn’t doing so good. He is in the hospital awaiting a very complicated surgery tomorrow that the doctors have never attempted on anyone else before and it is unknown what will happen during or after surgery. I’ve taken the following information directly from his Caring Bridge site because I could never begin to explain the things Teresa can so eloquently state:
The future – on monday he will undergo and very extensive and intricate cervical spine fusion surgery lasting up to 10 hours.
His rib will be harvested for proper bone fusion, he will enter the world Christopher Reeves, minus the vent, with some crazy headgear called a halo where barbaric nuts and bolts are screwed in his skull. We hope that with Lucas’s history of weakened bones, it holds. After the surgery, he may regain what he lost but it’s doubtful. The main purpose of the surgery is to prevent further damage, mainly keep him alive. If his cord gets damaged further, he’ll stop breathing and end up on a vent or worse.
It is the best of the worst options. I try to stick with the old tried and trued saying that everything happens for a reason but I’m not sure I’m on board with paralysis in a kid who is already in a wheelchair due to other undiagnosed developmental delay. I guess the good news that we are already well eqipped to handle this. It would be much different but equally devastating if Lucas were a normal healthy 7 year old.
Did I mention that Lucas also has what appears to have a tumor in his brain? We’ll figure out the status-quo of that issue at a later time. Right now it’s on the back burner with his hip dislocation.
Gillette, now part of my medical heart, has built-in compassion and caring that can only be replicated by other specialized childrens facilities. Their kindness has kept me from jumping over the edge of insanity. I’m still teetering though. When I asked the pediactric neurosurgeon how many surgeries like this he has performed. He smiled nervously and said “none.” Trust is imperative.
So now I’m going to be selfish! I’m not ready by any means to take Lucas’s last images. He needs to make it through this surgery just as he has many others. He needs to open his eyes and smile when he hears his name or when someone says “Ouch!” If he is in the halo, it will just be part of his Super Hero costume and it will be decorated appropriately.