Nico hit the sweet spot. Just as his doctor predicted, his lab values landed squarely in the desired range at the prescribed dose. Clinic hit the sweet spot too. Today we were only in clinic for three hours instead of eight. Considering the infusion took two hours, three hours is really amazingly good!
Lately, I have noticed a theme in this process. I feel like I am fighting for “normal” and by normal I mean that I want my three-year old to be treated like a three-year old. There are about five different stories from last week that run along this theme. Unfortunately, I probably cannot publish any of them without hurting feelings. So, I will give a very broad example. Nico loves to be around other children his age or older, so I take him to a nearby park often. Almost every single time, a well-intentioned mom warns the pack of boys into which Nico has integrated to “be careful for that little boy.” The warning comes from a good place, from a responsible parent, who believes she is protecting a much younger child. The other boys invariably ignore the warning. The mother invariably becomes visibly anxious, and I receive a lot of sideways glances. And to those of you who think I am being sexist by picking on moms, none of the park-dads have done this. A few minutes later, after warning-mom has overheard Nico’s incessant talking, she will approach me in astonishment and ask his age. For some reason the assumption is that he is a prodigy and not just small for his age. I casually answer and go about my business.
I am not writing this to complain about the individuals who reasonably believe I am a completely irresponsible parent that would allow my barely-two-year old be trampled by a pack of four-year old boys. But I do not want to explain to every Tom Dick and Harry that my son has been getting chemo for over fourteen months. We are trying to live. And it is harder to live “normally” when you are getting pity looks, hearing “Oh, I’m so sorry,” and explaining your most personal heartbreak to a complete stranger. And most importantly, it does not matter. He is small. So what? Just let him play with the other kids. Even if it means he gets knocked down. He knows how to get back up and he knows how to say, “I do not like that. Stop.”
I am not trying to minimize what my child has experienced. But he is a child, and children do not view these experiences the way adults do. Nico does not consider himself special because he has a port, takes a lot of medication, or gets a lot of lab draws. He considers himself special because he is really a Robot in Disguise. He will let you in on this secret, that he is the Transformer known as Heat Wave. And if you are lucky, he might deem you a fellow Autobot (except Optimus Prime because that is me) and ask you to “roll to the rescue.”
Nico has been taking advantage of his new Casey Cares membership. Casey Cares provides fun opportunities for kids having all kinds of medical issues. Last week, thanks to Casey Cares, we went to Nico’s first NHL game (Caps v. Bruins), met elephants, and Nico received personal soccer instruction from the University of Maryland Baltimore County Men’s Soccer Team (Division Champions!). He absolutely loved soccer. #23 Jordan Becker (who started in all 14 matches in 2013) gave Nico hours of one-on-one attention. Luckily Jordan already knew all about Transformers and successfully integrated this into soccer. Nico deemed Jordan Bumblebee about ten minutes into the day. Jordan and Nico “transformed” several times during the game, and included arm lasers as part of the defense. I am going to attach some pictures of the events in a slide show right after this post (on warriornico.com). Nico had a lot of fun.
Lately, I have noticed a theme in this process. I feel like I am fighting for “normal” and by normal I mean that I want my three-year old to be treated like a three-year old. There are about five different stories from last week that run along this theme. Unfortunately, I probably cannot publish any of them without hurting feelings. So, I will give a very broad example. Nico loves to be around other children his age or older, so I take him to a nearby park often. Almost every single time, a well-intentioned mom warns the pack of boys into which Nico has integrated to “be careful for that little boy.” The warning comes from a good place, from a responsible parent, who believes she is protecting a much younger child. The other boys invariably ignore the warning. The mother invariably becomes visibly anxious, and I receive a lot of sideways glances. And to those of you who think I am being sexist by picking on moms, none of the park-dads have done this. A few minutes later, after warning-mom has overheard Nico’s incessant talking, she will approach me in astonishment and ask his age. For some reason the assumption is that he is a prodigy and not just small for his age. I casually answer and go about my business.
I am not writing this to complain about the individuals who reasonably believe I am a completely irresponsible parent that would allow my barely-two-year old be trampled by a pack of four-year old boys. But I do not want to explain to every Tom Dick and Harry that my son has been getting chemo for over fourteen months. We are trying to live. And it is harder to live “normally” when you are getting pity looks, hearing “Oh, I’m so sorry,” and explaining your most personal heartbreak to a complete stranger. And most importantly, it does not matter. He is small. So what? Just let him play with the other kids. Even if it means he gets knocked down. He knows how to get back up and he knows how to say, “I do not like that. Stop.”
I am not trying to minimize what my child has experienced. But he is a child, and children do not view these experiences the way adults do. Nico does not consider himself special because he has a port, takes a lot of medication, or gets a lot of lab draws. He considers himself special because he is really a Robot in Disguise. He will let you in on this secret, that he is the Transformer known as Heat Wave. And if you are lucky, he might deem you a fellow Autobot (except Optimus Prime because that is me) and ask you to “roll to the rescue.”
Nico has been taking advantage of his new Casey Cares membership. Casey Cares provides fun opportunities for kids having all kinds of medical issues. Last week, thanks to Casey Cares, we went to Nico’s first NHL game (Caps v. Bruins), met elephants, and Nico received personal soccer instruction from the University of Maryland Baltimore County Men’s Soccer Team (Division Champions!). He absolutely loved soccer. #23 Jordan Becker (who started in all 14 matches in 2013) gave Nico hours of one-on-one attention. Luckily Jordan already knew all about Transformers and successfully integrated this into soccer. Nico deemed Jordan Bumblebee about ten minutes into the day. Jordan and Nico “transformed” several times during the game, and included arm lasers as part of the defense. I am going to attach some pictures of the events in a slide show right after this post (on warriornico.com). Nico had a lot of fun.
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