Belong is a powerful word. The idea of belonging relates to almost everyone’s desire to be included, to be known and to be accepted.
Belong is a powerful word. The idea of belonging relates to almost everyone’s desire to be included, to be known and to be accepted. Yet to feel included, one must be understood. For us, explaining in order to help others understand who Rachel and Janneke are and their needs can be exhausting.
To be known
As I work on this article, I am sitting in the general pediatrics ward of McMaster Hospital, watching Janneke sleep. I’ve spent the last 24 hours discussing her health with the stream of nurses, medical students and physicians that walk in and out of the room. Though I understand their need to know what concerns brought us to the hospital, the telling and retelling of her medical history is emotionally and physically draining. These are the moments when I long for a diagnosis to help connect the dots. In my fatigue, I tell the staff that Janneke has “Pot Syndrome” and wait to see how long it takes them to recognize my homemade label.
I’ve been told that diagnoses are like labels; they belong on cans, not on people. This is true, but I also believe a diagnosis creates a footing, an understanding. The diagnosis for a child validates concerns and abnormalities that parents otherwise wonder if they are imagining – or feel they must constantly defend and explain. A diagnosis can foster the feeling of belonging, connecting you with support groups and others who live with or care for the same diagnosis.
Because our girls remain undiagnosed, they are followed by a genetics team that operates out of SickKids Hospital. Not only do we appreciate their concern for Rachel and Janneke, we know that our girls’ unique presentation can be of interest to those studying rare diseases.
Living to support
What I admire about our genetics team meetings is that they always begin with listing the girls’ abilities before discussing the disabilities – celebrating the successes before working through the disappointments. I appreciate that perspective because it transfers into what it truly means to live in a supportive community.
Though we might think a diagnosis will connect our family with those who are like us, that doesn’t make them the supportive community of our dreams. Encouragement in the form of shared burdens and joys comes from both like-minded and unlikely people.
Belonging doesn’t mean being alike. In fact, belonging can be exhausting at times, as we learn to work together through the grit. With understanding and acceptance, everyone has the chance to flourish. That’s powerful.
“And if the ear should say, ‘Because I am not an eye, I do not belong to the body,’ it would not for that reason cease to be a part of the body. If the whole body were an eye, where would the sense of hearing be? If the whole body were an ear, where would the sense of smell be? But in fact God has arranged the parts in the body, every one of them, just as he wanted them to be” (I Corinthians 12:16-18).