Theo’s nasogastric tube and oxygen line are conspicuous. He has stridor breathing – every time he takes a breath, he emits a loud high-pitched sound, which is believed to be a result of scar tissue in his larynx caused by his prolonged intubation while he was in PICU. He randomly cries out (either caused by the pain in his limbs or his underlying neurological condition) and can be difficult to console; he vomits frequently.
We used to be nervous the first few times we took Theo out of the house. What if he cries? What if he vomits? What if people notice that our son is very sick? My anxiety is not because I am in any way embarrassed of Theodore but as a highly introverted individual, the idea of drawing attention to myself or to my family made me slightly apprehensive.
When we are in crowded places, adults usually glance down at Theo then quickly redirect their gaze, sometimes smiling uncomfortably. Children, curious by nature, always notice that Theo is different from them and will stop what they’re doing to stare at him until their parents notice and swiftly whisk them away. In the beginning, the reactions of others used to unsettle me. Their reactions used to emphasize to me what I already knew: that our family no longer fits the mould, the false illusion of what’s ordinary.
Last weekend, before Mark departed for work, we decided to take Theo to Niagara Falls; he had never been before. With his cousins by his side, Theo felt the mist of the falls for the first time on his cheeks. And, later he got the opportunity to soar 175 ft above Niagara Falls on the SkyWheel with his mom and dad.
As a popular tourist destination, on a beautiful summer day, it was swamped with people. And yet, that day, I didn’t notice a single one. All I could see was my family, my beautiful family. We are not an ordinary family and although I’m learning to adjust to the extroversion associated with it, I’m assertively proud.
Today’s miracle is my family who fits my mould proudly and perfectly.