A Whole New World

walkingReal-life scenario 1:

I couldn’t breathe. All I saw were chocolate chips falling on the ground, peanuts crumbling in a small hand, wheat bread being thrown to the ducks, and my son toddling in every direction of danger excited with his new-found freedom and mobility.

I couldn’t even see my daughter who was just craving my attention.

But she knows how to deny food offered to her, how to say she has a food allergy that can hurt her, how to find me and ask my permission.

Her little brother doesn’t.

What was supposed to be a casual, fun outing for me and several other Mom-friends was petrifying.

I left. I broke down in the car.

Sad for my Jonah and the limitless ditches of disaster he has to face with his allergies that he has no clue about yet at his age. Sad for my Sadie who is starved for attention and often times gets the leftovers because I’m trying to keep everyone alive, including her. Frustrated for myself not being able to deepen any relationship outside of my children’s basic needs while all the other Moms seemed so relaxed and calm.

We’ve all been robbed in some way.

Real-life scenario 2:

New nursery location.

New room.

New volunteer workers.

Mommy sitting in a completely different room.

Not there to keep an eye out. Hover. Clean. Watch. Protect.

As usual, I explain his allergies one by one.

“Yes. There are fourteen. Six cause Anaphylaxsis. They are life threatening. 911 first, then me. Don’t be afraid to use it…it will save his life if you do it in time.”

I get an alarmed, blank stare. Questions.

Will he get a tummy ache? Oh, I didn’t know milk could do that.”

Shock. Doubt.

Finally a familiar face who knows what we’ve been through. She reassures me she knows how to work his EPI Pen and yet I still leave with a mound of guilt, worry, anxiety and regret over an hour and fifteen minutes of my absence.

An absence that never takes place. I am always there. Every waking and sleeping moment. 24-7.

My friend stops me in the hall with the familiar tears already rolling down my face.

Most parents leave their children feeling bad they cry from separation anxiety. I leave my children wondering if I will see them again okay and happy or in the back of an ambulance swollen and blue in the face.

She prays.

I don’t want him to be seen as different, or special needs, or perceived as damaged goods.

I want them to see him.

Not his allergies.

They need to see his sideways smile when he squints and closes his eyes on purpose just to be funny. And his beet red face when he shows off his muscles. Or how he will walk to you and get your attention just to tell you he went poo in his diaper and won’t give it up until you change it. Or the way he always stops whatever he is doing to yell and point at the airplane in the sky with a gaping mouth, smiling in amazement every time.

Do people see what I see?

I collect myself and relinquish my control.

He survived, but I barely did.

I may look like I’ve got my act together or like I know what I’m doing, but I am being bluntly honest when I say that this allergy world I live in is a whole new world. The older Jonah is becoming, the more terrifying it seems. He can walk, he can’t talk, and he’s a curious boy who puts everything in his mouth. There are so many obstacles, so many things to know and research, plan for, execute and there is no room for error.

It is overwhelmingly terrifying some days and I melt under the pressure. It breaks my heart. It makes me feel sorry for all of us in different ways. And then I pick myself up off the floor and press on because no matter how I feel, it is what it is.

I am committed to keeping him safe. And I am trying as hard as I possibly can to make food enjoyable, nutrient-dense, and special.

It’s a whole new world.

 

 

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2 thoughts on “A Whole New World

  1. Jessie you are an awesome mom and when the Lord made you Sadie and Jonah’s mama He knew just what he was doing. Praying for you always. šŸ™‚

    “I can do all this through him who gives me strength.”
    Philippians 4:13

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