When people ask me how Caden is doing, I put on my "smile" and usually respond with something like "Caden is Caden but at least he's home" or "Caden is stable" or if it appears the person doing the asking is hoping for great news, I might even say "Things are good".
But most of the time, they are not.
People ask because they care; because Caden has become a part of their lives. But most people, understandably so, do not want to hear every detail of Caden's day to day struggles; of how we were up all night trying to make his pain more bearable by venting his g-tube and giving him yet another glycerin suppository or holding his head as he vomits. No...people want to hear "Caden is doing well". And so...that is what I try to say with a "smile" on my face.
I "smile" so that others feel better, less awkward and more at ease. My "smile" forces me to stay positive; to be an upbeat, "you can do it", inspiration to other parents who have sick children. No one wants to see me moping around, wallowing in self pity...so I don't. Or at least I try not to.
Now this is not to say that my smiles are never genuine. I smile when Caden smiles up at me or when he laughs his notorious belly laugh. I smile the few times I get to watch him sleep peacefully wondering what he is dreaming about that allows him to be comfortable for the first time all day. I smile when we get to be a family of five with no nurses or therapists. I smile when I see Emily and Ethan hugging Caden or holding his hand.
But often, my "smiles" are simply disguises hiding the fear, anxiety, anger and sadness that I feel as I watch my little boy's health decline. They suppress my need to lash out, yell, kick and scream. They allow me to temporarily bury my true emotions during difficult times or when I know acting on these emotions will only get me in trouble.
But when Caden smiles, it is always genuine and I honestly do not know how he does it. Children are honest; sometimes brutally honest because they can be and they can get away with it. They wear their emotions on their sleeves. They will tell you that you have gotten fat or you are going bald. They will scream when they don't get their way and cry when they want something. They do not care what others think. Children are genuine.
And so are their smiles...
So when I see Caden smile after just coming out of his fifth surgery in five weeks, I know it is genuine. For some unknown reason, Caden is happy. Caden smiles more than any other child I know. Why? Doesn't he know what's going on? Doesn't he know he can not do the things his brother and sister can do? Shouldn't he be angry or jealous? I know I would be. But he smiles. In fact, all the sick children I have had the pleasure of meeting over the past three years...smile. And they smile a lot.
Caden's smile is what keeps me going. It is his way of saying "Mommy...everything will be okay". It comforts me when my heart hurts and my spirit is crushed. His smile is the door to his pure soul and kind heart. It assures me that I am doing my best and he knows it. It is his way of saying "I love you Mommy" and letting me know that no matter what happens, everything will be alright.
Hi Jill,
ReplyDeleteI'm Megan, editor of a new website called TheMighty.com, where we share and tell stories of people facing challenges, whether that be a disorder, disease or disability. I came across your blog, and I so love it. I'm reaching out because I'd love to repost "Caden's Smile" on The Mighty if you're interested. I know our audience will appreciate it. Let me know what you think -- you can shoot me an email at megan@themighty.com. Hope to hear from you. Either way, thanks for sharing your story.
Cheers, Megan
That was a beautiful post. I wanted to say tribute, but I don't know it is the right word. It was lovely to read and I know you speak the truth. I see it with others as well, no fake smiling. If we could all be like that, I wonder what the world would be like? I can't even fathom.
ReplyDelete