Luke had a cleft team appointment yesterday.
For those unfamiliar with "team" visits, we sit in a room and the specialists come to us -- we saw social workers, a pediatric dentist, an orthodontist, a pediatrician, our main surgeon (and ENT), an oral surgeon, a speech therapist, and others I probably don't remember.
He has an extensive series of X-Rays taken before the visit, and has pictures taken during the visit. We leave with a general idea of what steps we need to take related to Luke's cleft over the next year. In about a month, we should receive a copy of each specialist's thoughts and recommendations.
It's a very effective way of handling care for patients whose needs cross into so many various specialties. I can understand why a family member once remarked to me, "Oh, so Luke has his cleft team appointment coming up. You must be excited about that."
But, no, "excited" is not a term I would ever use.
"Thankful" -- yes. I cannot begin to describe my gratitude at being able to raise my son in a time and place where his bilateral cleft lip and palate is virtually rendered a non-issue, for all truly important purposes in his life. In some other times -- in some other places even today -- I am not sure whether my son could have survived infancy. How would he had gotten enough nutrients?
Luke had a prosthetic palate made when he was a week or two old. Before then, every drop of milk we got into him (using a special bottle) was an effort that required just the right angle and speed, or else he would choke. How do you swallow when you are a brand-new baby, and you don't have anything for your tongue to push up against so that your airway closes, and your esophagus opens, at just the right time?
I remember the pediatrician, at Luke's first appointment after he came home from the hospital as a newborn, encouraging us to keep the lights low when he got up for middle-of-the-night feedings. "But we can't!" I cried. "We really have to see what we're doing with him!"
The importance of this was brought home to me shortly after Luke's circumcision, in the hospital the day after he was born. The nurse came in to give him some Tylenol. She had it in a little syringe, and she did what she would have done with any other baby. She squirted it in his mouth and left the room.
Except Luke wasn't any other baby.
I sat there, looking at him as she walked away. It was as though time slowed down.
Because after she squirted that into his mouth, he didn't breathe. He didn't swallow. He just ... choked.
It took a couple seconds for it to register with me that Luke
couldn't catch his breath. He was not going to start breathing again without help. So I screamed for the nurse to come back to the room.
She came in, looked at him, grabbed him in her arms, and started running out of the room as she hit his back. On the way out she hit some kind of button that alerted others to her need for help.
And I sat there, alone in my room, wondering whether those brief moments were the only ones I would have with my dear, sweet son.
Thankfully, they weren't. Somewhere along that hallway, as the nurse ran and pounded my son's back, the Tylenol came out and air went in, and we were granted that most precious of gifts -- TIME. Time to care for, and love, and get to know one of the funniest and caring people I know.
That episode, and others, cause me to still give thanks for Luke every day.
And as I give thanks for Luke, I also should think to give thanks for the wonderful doctors who have cared for him over the years. Like Dr. Davis, the ENT who helped us avoid more serious hearing damage than the mild loss Luke currently has. Dr. Davis recently retired, but we saw him so often he was like an uncle. He was there for Luke's first surgery at 5 weeks of age. Luke referred to him often yesterday, saying how much he missed "the potato farmer."
Since this was a doctor who regularly cleaned out Luke's ears, you can imagine how he got that name:-)
I struggled for a long time about whether I had done something that somehow contributed to Luke having a bilateral cleft lip and palate. Finally, my husband helped me put that concern to rest, when he said, "It doesn't matter how it happened. It happened. And this is just who he is -- Lukey-with-a-cleft."
Please don't misread that. Luke's cleft does not define him. But it is part of who he is. You just can't separate it out from his identity. Take away the cleft, and would he still have the most empathetic heart I have ever seen in a child (or anyone, perhaps)? Luke's cleft -- and everything we have experienced as a result of it -- is part of him. And we love him. We love him so very, very much. We have all grown in a million ways as a result of Luke's cleft. While no one would wish their child to suffer, I would not wish to be who I would have been without Luke and his cleft.
I would not wish to be who I would have been without Luke.
And so going to those visits, where suddenly everything is about the cleft, and where doctors and their interns are peering into my son's mouth, and people are talking about things like how "his lip and his nose will need work in the future"
right in front of him, and where I have social workers silently evaluating whether he says he has friends (he does -- phew!), and where I'm just trying to take it all in and formulate questions and stay on my toes in order to be the best advocate I can be for my child ... well, no, it's not fun. But still, I am grateful.
And I realized yesterday that maybe, just maybe, I have contributed (thanks to the cleft!) to a bit of my son's sense of humor. I realized that in order to diffuse the tension (probably mine even more than his), I joke around with Luke at these appointments.
Here are some actual excerpts from some of yesterday's conversations: "Hey -- look at that wall that suddenly comes out like a half-circle ... I bet that's the entrance to a secret passageway!"
"And those bricks next to it ... if you press them in the right order, you can open the secret passage!"
"Like Diagon Alley in Harry Potter!"
And in response to the dentist who said I should sneak chapstick on Luke's lips while he sleeps ...
"I'll be like the Chapstick Fairy!"
"But what if I wake up?"
"Then I'll need some Chapstick-Fairy dust to quickly sprinkle on myself so I disappear!"
"No, you should sprinkle that on first!"
I will hand it to our cleft team too. Despite my dislike for the actual process, they are good sports. By some amazing turn of good fortune, Luke had an indoor recess at school just before the appointment, during which time he "drew
a blueprint to make a castle out of cardboard boxes."
I can't tell you the mileage those specialists got out of that imaginative act of his. Each doctor came in with instructions to ask Luke about the blueprints. And now I know we MUST find a way to help those blueprints become a reality.
Because in the end, that's why we're all gathered together in that room. It's not only about pharyngeal flaps, or frenectomies, or glottal fries (yes, a real thing!). It's about Luke, and his dreams, and the plan God has for all of his amazing gifts. All of us, coming together with Luke, to help make all of that a reality.