I am sitting here writing through the tears in my eyes. For the past couple of months and especially of late, I have been able to get just a small sense of what Gretchen and Larry and every parent of a sick, helpless child feel everyday...and it really sucks.
I have had the privilege to spend some real quality time with Liam. Somehow, for some reason, we bonded over and episode of Calliou or Curious George...who knows...and it doesn't really matter. And now, I truly feel his sweetness and his suffering. I wonder why I didn't try to spend more time with this special family and this very special little boy before all this happened. It can make me sad to think that it took an illness to strengthen a friendship, but instead I will be happy for the bond.
Today was especially hard on my friends—and myself as I realize now. It started in the day hospital early this morning. Gretchen and Larry were to meet with the surgeons and asked me to play with Liam so he wouldn't have to hear the conversation. The day started with a total surprise, when asked who he wanted to come with him to get his blood drawn, Liam answered Mommy and Aunt Gina. Then, when the consultation with the surgeons started a bit later, a drowsy Liam sat on my lap while rousing himself to his environment. A sippie cup full of magic juice later, it was on to the playroom. Several things really touched me about this day, and while they may seem small and insignificant to you, they were huge for myself and for Liam—or perhaps for our relationship. If anyone has spent anytime with Liam of late, you'd know that he is never more than a tubie length away from his mommy...but he will stay with me for small periods of time (I chalk this up to the fact that I never really grew up and relate to any level child because I pretty much am still one at heart). In the playroom, he sat on my lap while playing a rousing game of Bingo. To give you an idea of the scene, picture a bunch of 3 to 5 year olds around a table, most of which cannot read the letters at the top of the board. The highlight of the game is spinning the ball cage round and round until the 5 numbered balls drop methodically down the ramp. Liam was so excited he kept flipping his bingo board upside down and giggling. It was then I realized we had a leaky diaper situation. Now, nobody changes Liam's diaper except Mommy and Daddy (and maybe grandmas). I had to explain that they were talking to the doctor and couldn't do it, but that I could. It's as if he senses what is going on, but to my astonishment, he agreed to let me do it...I guess the alternative didn't feel so good....but rather than get upset, he obliged...and let me tell you it was a stinky! I couldn't believe it.
Then after playing a while, one of the nurses, Emily, came to find us. She wanted to give Liam his Tylenol before his blood work (it is liquid and is administered through a syringe-like contraption minus the needle). He kept saying, "No, Mommy do" through the passie that is permanently pursed in his lips. Emily tried to explain why we needed to do it before mommy got there. We both told him how proud Mommy would be if he did take it. We "tasted" it and told him it wasn't the bad one, but the good tasting one. Then finally, through tear-filled eyes, he said, "No, Aunt Gina do it." Again, I was shocked, and touched. As I said before, it's as if he realizes something is up and that everybody is a bit more "touchy." The kid is very perceptive...and no matter what you give him or offer him, his response is a sweet, high-pitched, "thank you" or "no thank you"—even if Mommy just gave him medicine. It kills me really. So, I think he is adapting his behavior for his family, because he knows something is amiss. Crazy really.
Anyway, a little while later I left the hospital (at 68th and York) and walked down to 59th and Lex for the fresh air and to catch the subway there. Only then did I realize, that I had actually driven in to the city and parked my car on 70th street by the hospital. I guess I was a little pre-occupied with thoughts of Le Petit Prince—worrying about the big day on Wednesday.
Sadly though, I just found out that surgery MAY be postponed because Liam ran a temperature late this afternoon and was admitted to the hospital. I can't tell you how upset that made me. I want him to have the surgery already, to have the poisonous tumor removed from his little body and for him to be on the road to victory over the evil that has waged a war on this valiant young soldier. This soldier, though is tough, he is a fighter. And he, along with this whole army he has backing him up, is already paving the way.
Onward!
-Gina Provenzano
