High spirits

I met a woman today and after explaining what Christopher has and how congenital disorder of glycosylation (PMM2 CDG) affects his body she looked at me and said…

“well you sure are in high spirits.”

I was confused. I didn’t know exactly how to respond. I said something to the tune of I can’t change it and this is our life. But after thinking about it I wish I would have told her to look at him. Really look at him. Look past his head hanging a little lower than a typical 3 year old. Look past his medical stroller with his formula bag hanging on the handle. Look past your idea of what children are “supposed to be.” Look past his diagnosis.

Now that you’re doing that….take him in. Look at his eyes that light up when I say his name. Listen to his sweet giggle as his favorite part of Bubble Guppies plays on the iPad. Look at his gaze when he grabs my arm and looks to me for smile or a kiss. Listen to him say “do-it” over and over and then watch his pride as he blows raspberries until his shirt is soaking wet. Reach your hand out and hold his ever-trusting hand in yours. Feel his soft skin and resist the urge to kiss every inch of his face. And after doing all of that, how do you feel?

Are your spirits high?

I know that our life may not be like others. I know that our child comes with a long list of diagnoses, specialists, appointments, and unknowns. I am not sure what I am “supposed” to act like given this life. I am unsure what she expected my attitude to be. I am happy. I’m proud that he’s my son. I am joyful. Don’t get me wrong, there are moments of grief, anger, and sadness and there always will be. But our son is simply amazing. He has changed our lives forever. To say that he has opened my eyes to see what really matters in life is an understatement.

Next time someone makes a comment to me about my high spirits I will simply say look at him, how could I not be happy?