We came in early this morning. You had a bit of a rough time falling asleep, your nurse told us, but you found your peaceful spot eventually, and when we came to your crib, there you were, your face tucked up in your hands (you never stay swaddled for long, Jacks). We kissed your head and prayed a few more prayers. There is always time for more prayers, because, you see, breathing is its own prayer.
And I want to tell you a little about today, about breathing, about your dad and me and some of the friends Jesus has sent us to be here along the way.
Breathing, sweet boy, is a gift from God. God breathed life into Adam in the very beginning – as your Storybook Bible says, God looked at Adam and Eve and said, “You look like me.” And you do look like God, Jack. You are the image of God. You are His workmanship. Breathing is a gift that God is giving you.
For you, that gift is going to come through a tracheostomy. That’s a breathing tube, but there is something cool about the word “tracheostomy” so I’m going to use it for you and around you, and Dad and I will teach others to use it too. God is going to help you breathe through this tube for a while, until you are even bigger and stronger than you are now, until, as your friends help to bring together your lip and your palate, as one of your friends (a favorite of your Dad’s and mine) has built up your jawbone, you won’t need the trach anymore.
Knowing you as we do, we’re guessing you’ll have already determined not to need it long before your last surgeries.
So, Jacks. This is a big decision. Your dad and I sat in a room without windows, my big cup of water in front of me, the vague smell of hospital coffee and hand sanitizer in the air, and we listened. We listened to the medical diagnoses – you’ve got some challenges with your airway both in your nasal cavity and your mouth, and something of a challenge in the area of your voicebox – but we also listened to some of the doctors talk about you. About the challenges you’ve had finding just the right place to put your head to breathe easy, how frustrated you get when you can’t figure that out, about how, as your friend the trach nurse said, you don’t know yet how easy breathing is. And you deserve to know that, Jacks. You deserve to know the freedom of this gift from God.
We listened. Some of these doctors talk more about your diagnoses than they talk about you, and that’s understandable. But some of them – the ones that we look to most for counsel and wisdom – they talk about you. They talk about your thriving, they talk about your development, they talk about giving you the chance to explore movement and learn to crawl and walk and be in different positions. They talk about making sure you get to run around in a couple of years and cause us so much trouble. As they talk, I see you. I see you and Dad in the kitchen. I see you outside our house with the dog I do promise to buy you. I see you coming to church with us and the grocery store and all the while, you’re free. You’re free because, with the trach, breathing will be as easy for you as it is for some people who don’t have one.
So your dad and I decided today that we’ll consent to this surgery for you (there is a surgery, too, for a G-tube to help you grow this first little bit but I bet you anything that you are like your dad and you will love food so much that soon you’ll be able to eat and eat and eat and you won’t need the tube). It’s not easy to make these decisions, but today we felt peace. Today we were reminded that you ought to know how easy breathing is.
People will want to say you’re a kid with “special” needs. They might try to tell you or tell us that you’re so brave and we’re so brave, because we’re carrying all this extra stuff with us. But it’s not true. You are Jackson. Your needs are just your needs. And we love to make sure you have what you need.
Today God reminded us that He gives breath to us. And for you, He is giving that gift through this trach for a while. But it is the same big, bold, wildly beautiful gift of life. And He is giving it to you no less miraculously or wondrously because He is giving it a different way.
So we will go hold you in a few minutes and tell you more about it. For now, I’m writing this down so that you know that from the first moments we decided, we knew that we were only making the path straight so that God could come give you what He longs to give you: lungs full of His breath of life, and a heart full of His marvelous love.