Originally published on February 23, 2016. Mac has such an unusual childhood. I shudder a bit when I think of the ways his life is not the same as most six-year olds. When he asks Nathan’s doctor if he can use the iPad to take a picture of what an epiglottis looks like–a gory photograph in my opinion–and she lets him. When I call EMS during one of Nathan’s episodes and then, while still on the phone, cancel the call because he came to and Mac says, “No don’t cancel them! I want to see the firemen!” (as if they’re his friends). When he tells me he wants to be in the Army when he grows up, but Nathan can’t be in the Army because he might have another one of his chromosomes shot off! These are the thoughts and actions resulting from a unique sort of brotherly love. Here’s a reminder of the big lessons he’s learning and the ways he’s teaching me.
Why did the police not come?
What do you mean?
The fire truck and the ambulance came. Why did the police not come?
This was the beginning of a conversation with my six-year-old as he was processing, three days later, an emergency with his brother. I imagine it’s not the only conversation we’ll have. I welcome them. I hope he keeps on talking and wrestling with the sadness and anger. I hope that ultimately he ends up at a place of peace and gratitude, even for the hard things in his life. That’s what I’m working on. In this way, we’re growing up together.
On Valentine’s Day–because all of our medical drama tends to happen on birthdays and holidays–we called EMS because Nathan had a significant lethargic episode. I was sitting beside him working on our taxes while he was “eating.” (He was playing with a toy and being tube fed.) The pump had finished feeding him when he suddenly vomited. He of course couldn’t manage all of the vomit in his mouth and proceeded to have a hard time maintaining his airway. I swiped what I could out of his mouth with a nearby dish towel. He vomited a couple more times and then started nodding off like he wanted to go to sleep. He aroused a little bit when we used a suction machine to help clear out his mouth. But overall he was super lethargic and not responding to us well at all. At that point, the PA of the house declared it time for me to call 911, while he kept a careful watch on whether or not he needed to start breathing for him.
Ten minutes after I made the call, sirens came blaring up our street. This is the 4th time we’ve called EMS for Nathan but the first time his older brother, Mac, was awake to witness all of the excitement. I started pacing as soon as I made the call and Mac became my shadow. He followed me right out to the driveway where I anxiously flagged them down.
Upon arriving four firefighters descended on our dinning room. Then three more paramedics and a stretcher. They began checking Nathan’s vitals. His oxygen was 94 and his heart rate was 170, but other than that he looked much better than he had minutes earlier. His brothers eyes were huge and he didn’t resist when I grabbed hold of his hand. He held it tighter than usual. Then his daddy said, “Look in my eyes buddy. Brother is going to be okay.”
And he was.
By the time he got to the ER he was interacting with us same as usual. He spent the evening getting more tests, but everything returned to normal. This is the third type of event that he’s experienced like this one. Only this was the first time he wouldn’t make eye contact with us or respond to his name. It was scary for all of us.
Three days after our big emergency Mac was thinking everything through and began to ask me some big time questions, What happened to Nathan’s missing chromosome? Where did it go? Did God forget to put it on? Or did God want to make Nathan that way on purpose?
At this point I was just listening rather than answering questions. He was still talking.
I think God made him this way on purpose. He said to me, If he didn’t lose his chromosome then I think he would be walking and talking by now.
I think so too buddy.
It’s not fair to me. Rubs his eyes. The tears are coming now. It makes me sad.
Then he jumps right back in and says, Well there were two things that could happen, I think! One, God could make him without a chromosome. Two, I wouldn’t have a brother.
Which option would you want?
With a little lift in his voice, Oh, I would want a brother!
He went on and on asking lots more questions about what it was like me to have a sister and if she had anything that made me sad? He wanted to know why God makes people with special needs or if Satan makes them? Deep, hard questions for a little heart. He’s been through so much being a big brother to Nathan. I told him the only thing I knew to tell him. I told him the story from John chapter 9 where the disciples want to know who sinned this man or his parents that he was born blind. My voice quaking as I told him, And you know what Jesus said? Jesus said, it wasn’t anyone’s fault that this man was born blind. It was so that other people would know about God and his power.
He says to me, Mommy, was Jesus crying too when he said it?
No buddy. Just your mother.
It truly was one of the sweetest and most bitter conversations I’ve had with him about his brother. It emphasizes that God is telling other people about Himself through Nathan, starting with his big brother. It doesn’t make it easy. In fact, big brother is doing a lot of hard work learning these things at such a young age. His heart is open to understanding that God didn’t forget to give his brother a chromosome and all that comes with that divine decision.
He is still six however. At the end of our conversation he says to me Well I think we should trade Nathan for Noah (his cousin). That way I’ll have someone to play with.
I’m a sorry alternative for a brother, or a cousin, but he’s been playing with me this week instead. It’s no surprise that we’ve been playing games of pretend emergencies, only in our stories, not only does a firetruck and an ambulance come, but also a police car.
“Neither this man nor his parents sinned,” said Jesus, “but this happened so that the works of God might be displayed in him.'” – John 9:3
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