But We’re Not Like That Mom

But We’re Not Like That Mom

Written by Guest Blogger, Jenn from Unique But Not Alone

As our support group meeting began, some of the equipment in the room began to pulse and hiss oxygen. This caught Grace’s attention. She said, “Mommy, that sounds like a snake.”

“Gracie, that is not a snake. It is oxygen equipment. It helps our Alpha friends breathe because their lungs aren’t working well anymore. You used oxygen when you were a preemie baby. I know you don’t remember that though.”

“Mommy, why does Mr. Marvin need oxygen?”

“He has Alpha-1 just like you and Meghan do Gracie.”

“But we’re not like that Mom,” she said with uncertainty and a worried expression.

I’m pretty sure I took a deep breath as I searched for an appropriate response within my brain. These moments often dizzy me and jab our Alpha-1 reality squarely into the present.

“You’re right, Grace. Your lungs aren’t sick, but remember that we are very, very careful to take care of your lungs. We don’t go outside on icky air days. We don’t go around cigarette smoke. We keep you away from cleaning products.”

“Uh huh, I remember. Did “they” do that Mom?” Grace said pointing to some of our Alpha friends.

Another deep inhale, and I replied, “Gracie, sometimes people with Alpha-1 get sick lungs no matter how careful they are with their lungs, but it is still important to take care of ourselves.”

“Will my lungs will get sick Mom?”

“I hope not honey. That is why we take such careful care of you and Meghan. You have Alpha-1 too. We want you to have a long healthy life with good lungs and a good liver.” I pulled her into a snuggle, and hugged her.

“I hope I don’t get sick lungs Mommy. My liver got better when I was a baby.”

“Yes, Grace. We all hope so too. I don’t want you or Meghan to have sick lungs or livers. We hope the doctors will figure out a way to make Alpha-1 go away.”

Tears soaked my eyes, but I turned my face away to shield her from my biased emotions.

The day had come. I wondered when it would, but here it was. Grace’s inquisitive six-year old nature had matured enough to probe a little deeper into Alpha-1. I’m not sure she completely understands, but it is in these moments where I help shape Grace’s perceptions of Alpha-1. Sometimes, it is hard to balance reality with my natural tendency to shield her from Alpha-1. I think the conversation went fairly well considering the gravity of the topic.

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