When I was in College, I supplemented my living costs working as a PCA (personal care aide) for a special needs child named Jordie. A (now) 12-year-old who was shaken by his father when he was three months old and who suffers blindness, seizures, scoliosis, pulmonary distress, is fed through a gastrostomy tube and has a colostomy bag. His mental capacity is frozen to that of a baby. He will never walk, never talk, never see the faces of his loved one’s, hold his own child and say I love you to a woman…
But he has a smile that lights up a room. That’s no cliché. To see Jordie smile is like standing before a splendid waterfall. There’s peace and happiness in the face of this beautiful child. He so rarely complains; I can count on the fingers of one hand the times that I saw him cry in pain or distress. His whole existence has revolved around fighting a battle for life and he’s done it with a will that most grown men don’t have.
Jordie is dying.
A month ago he was lifted improperly at school and broke his femur in two places. He was hospitalized, released and re-hospitalized not long afterward with RSV (Respiratory Syncytial Virus); which he most likely contracted during his first hospital stay. His right lung collapsed; due to his scoliosis (an abnormal curve of the spine) his rib compacted the lung and collapsed it. It couldn’t be reinflated because there just wasn’t enough room in his chest cavity. He now has lung disease, and it can’t be fixed.
He has coded several times and now has a DNR in place. About a week ago his vitals stabilized enough for him to be released (the team thought it better that he die at home). Before releasing him, they had to deliberately drop his O2 sats in order for the government to fund an at-home oxygen machine for him. I could easily rant and rave right now about the idiosyncrasies that are the government but I guess in the end it worked out and Jordie is where he needs to be.
This morning I went and saw him for the first time since this all happened. In some ways I wish I hadn’t, for reasons that are so hard to explain. He looked well, he looked like Jordie and not like a child with one foot on earth and one in heaven. It makes it hard to believe. But it’s not a reality that I can easily talk away. He coughed, once, briefly, while I was sitting beside him. I had to physically restrain myself from doing chest therapy and being, again, the person pounding on his chest and telling him “that’s it, big cough, get it all out”. I used to give him chest physio for hours, he with a big grin on his face while I pounded and sang along to whatever tune was on the radio. It was a ‘have-to’; in order to avoid Pneumonia, preserve the strength of his lungs, give him breath to live. And now it’s not allowed. If the mucus is loosened, if he tries to cough it up and can’t, it will block his air passages and literally choke him to death.
We’ve all hoped and prayed that he would fight his way out of this one just like he’s done every other obstacle that’s set itself in his path. But there won’t be any fighting this time. Nothing can magically cure his lungs, rid him of the pressure sores that have, for the first time, appeared on his skin. It’s just a matter of time now, an inevitable waiting game. I can only hope that he will go peacefully, that it will take him in his sleep while he’s dreaming, and that dream will become his reality.
And I will always be thankful for having legs that walk and eyes that see. For breath and for voice. For having a disease that lets me live. And for having known one of God’s true silver-tipped angels.