It has taken me a week to write this, and I'm not so sure I've quite captured last week's realization for Gracie or for me. It was difficult to recount the experience since my emotions pretty much ruled the moment.
I grabbed the black rectangle shaped door knob, and pulled hard to open the glass door of the conference room. Meghan was hip level to the left of me, and Grace was shoulder level on my right. Meghan gleefully muttered, "Yay! The Alpha friends!" We had arrived at our Alpha-1 support group meeting.
As the door swung open, both darted into the opening, pushing into each other as they squeezed through the door way. I scolded, "No pushing girls! Walk please!"
Gracie and Meghan made a beeline for the easel in the corner, and quickly grabbed the permanent markers in the bunch using their internal radar for things not allowed in our family. "Hand over those markers girls. You can have these."
A collective "Ahhhhhhh Mommmmmm" was uttered. "You know the rules," I replied.
"Mommy! Mommy! Can you give us some paper so we can draw on the floor?" Grace asked.
"Alright. Hold on." A few poster sized pieces of paper later, and the girls were tummies down on the floor engrossed in their art.
I greeted familiar faces that I've gotten to know since 2003, when I finally found the courage to attend a meeting. Denial and fear had kept me away. I'm not sure what had finally given me the nerve to attend. Since then, two of our Alpha friends have gone home to Heaven, where they breathe freely. Their deaths profoundly affected me and honestly still affect me.
These folks smile and grin as they watch Grace and Meghan's immense energy level fill the empty spaces of the room. These folks call themselves Alphas. Most of them find themselves short of breath or chronically coughing on a daily basis. Some use oxygen to help them breathe. Some breathe without oxygen just based on sheer will. Others suffer the ill effects of Alpha-1 in their livers. Whether it is lung or liver dysfunction, Alpha-1 joins our Alpha friends together.
The night's topic was oxygen equipment, and Grace took a seat next to me at a long table while Meghan continued coloring. As the 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."
"Uh huh. I was small but not as small as Meghan. Right?"
"Yes Grace." I turned my attention to the speaker, but Grace tapped my left arm to get my attention again.
"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 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. It is hard to balance reality with my natural tendency to shield her from Alpha-1.
Meanwhile, the speaker was featuring different oxygen units, and our Alpha friends were asking questions along the way. Grace and I had been using hushed voices and whispers, but my thoughts were shrieking inside my head.
Why do I have to have these conversations? Why do my precious miracles Gracie and Meghan have to incorporate Alpha-1 into their lives? I know that there is no point in dwelling on the answers to these questions, and thankfully the unending love I have for my girls usually distracts me from their Alpha-1.
I suppose these kind of conversations are what keeps bringing me back to our "Alpha Friends" meetings.