I never knew...

I never knew how much having a tracheotomy impacted my son. I mean, it’s just a small tube inserted into the hole (stoma) in his neck that leads to his airway (trachea) enabling him to breathe. Despite the trach tube, he was mobile; he was active and seemed happy. After all he had lived with this thing for three years.

I vividly remember the two weeks before he had a tracheotomy. My husband and I had not slept as we watched over each of our son’s breathes, especially at night when his breathing made him labor and sweat like a marathon runner. We called 911 once. We ended up in the ER a couple of times and finally the doctor said he needed a tracheotomy. I was so torn. I was in agony for my son.

As Josh sat small and agitated on the hospital bed, the doctor walked into the room and gently explained how he was going to have to cut a hole into Josh’s neck so that he could breathe. Silent tears flowed down Josh’s cheeks as he began to understand what the doctor was telling him. Then Josh laughed as the doctor shared how he’d be able to blow bubbles from the hole in his neck, a feat no one else can do. And Josh continued to giggle as he pictured the bubbles floating away.

Adjusting to a tracheotomy was difficult. First Josh was in the Pediatric Intensive Care Unit after surgery. There were machines to get used to; suctioning of mucous secretions and a mist air compressor to hook up to at night. We had many supplies to order from the home health care company, but he was not on a ventilator and he was ambulatory. So we grew familiar with his needs and he grew comfortable with our care as his parents and time marched on.

Now the trach tube is out! And I don’t recognize my boy. I don’t mean physically, I mean his spirit, the essence of who he is; his countenance, his being. Yesterday, I watched as he ran at school recess like a long distance runner with great form and power. I marveled as he tackled the rock wall in his rock climbing class with strength and vigor I didn’t know he had. His first class was only one day after the trach tube removal and he challenged himself each climb, intently listening to the instructor’s directions and encouragement.

He has a confidence I never knew existed in him before. It’s as if the removal of this tube is the last visage of being sick with cancer; the last reminder that has been eradicated, pulled up and thrown out like a weed.

I knew my son had strength and courage, because he’s been through so much. But now he’s a different boy. He’s so smart and athletic and powerful. This is a side of him I’ve never seen, because it’s been hidden by cancer. It’s been concealed by four years of medical trauma. I marvel at who he’s becoming and I am thankful.

I never knew…