dear jack: the oxygen itself

Dear Jack,

You got your trach almost exactly 18 months ago. Its birthday is three weeks after yours – it’s always chasing you, trying to keep up, but you’re always a little ahead of it. This is the way that you are with the whole world, I think. Running out a little ahead, exploring and climbing and pushing your way through clumps of grass and tree branches and holding your hands under the hose outside.

Your trach follows you, and yesterday, we learned that it will follow you a bit longer.

It might seem like this is confusing. You aced your sleep study, you breathe on your own all day while you run around. And so we thought, me and Dad and your doctors, that yesterday would be the day you didn’t need the trach anymore. We told people about April 11, and their excitement translated to prayer and hope and smiles and imagining with us all that could change, would change when we left the trach behind.

But yesterday you showed us that your busy self needs the safety of easy breath at night. You who love to babble at us all day long need an airway free of obstruction when you sleep. And the trach gives you a safe, secure airway, one that lets your lungs breathe this gift of air and give your body oxygen, breath by sacred breath.

When you first got the trach, I told you that what Dad and I wanted more than anything was for you to breathe easy, to know what it was like to breathe without fighting for it. And you do this so beautifully, Jack. And that’s what matters. What matters is the oxygen itself, what matters is that fierce molecule of life, what matters is that you run around and play and sing and sleep without worrying or fighting to keep oxygen.

You are already so much bigger than the trach, Jack. Your life stretches tall and far like your favorite maple tree in the front yard. You love to be chased and tickled and you love to dance to the record player and you love to throw the green frog kickball in the backyard. Keeping the trach for a while longer, for however long you need it, is so small.

Sometimes it might seem not so small. Sometimes people might point or stare, or ask what it is, sometimes people might think it is harder for you to do things. Sometimes the rhythm of our home might feel really different from the homes of some of your friends, and it is a little different. But what I want you to know, when it feels different, when the trach feels like it separates you or when people stare or don’t know how to talk to you, when you’re scared or angry –

you can ask Jesus to tell you the story of you and your trach. You can march up to the throne of God and ask, in a way I can’t ask for you, to hear the story of your creation, the story of how God calls you, you, Jackson David, very good. You can go out onto the water where we look for Jesus and you can wrestle and argue and fall down and be rescued and keep arguing and being rescued every day. This is the fullness of life with Jesus, Jack. It includes argument. It includes telling our stories and hearing our stories told.

So for however long you have the trach, however long you need it, however long it helps you breathe easy, I pray that you keep asking Jesus to tell you the story, that you keep asking to see the goodness and fullness. I pray that you keep running and chasing and laughing when you’re tickled. I pray that you keep loving the feel of water in your hands and splashing in the tub. I pray that you live in the fullness of easy breathing. As for me, I’ll be thanking God for that small bit of silicone, and the wondrous life of yours it helps protect.

Love,
mom

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