Inhale…Exhale…
This month’s guest blogger is Jen from Unique But Not Alone
Oxygen tubes were strewn across the top of their lips and clear tubing clutched in their hands. Occasionally, a hiss would erupt from an oxygen unit. Here and there, the pulse of oxygen being delivered could be heard as a pshshhhhhhhh kind of noise. I had been there before. Their gulping breaths in and out, pursed lips, laugh lines in all the right places, and wide smiles greeted me. It was what I had waited for yet overwhelming at the same time. I was alone but yet among relatives of the same family: my Alpha-1 family.
As I walked throughout the conference hall, I began to calm myself with subtle inhales and exhales as I encountered familiar faces as well as new faces. Some were babies and children. Some were young adults; some were middle-aged. All were in attendance to learn, grow, relate, and feel less alone.
I was there to learn more about Alpha-1, wearing a smile on my face like a mask. No one noticed though. All were too busy enjoying each other. I was uneasy there. Denial keeps me safe inside of the world of being at arms length. I don’t walk the earth in the body of an Alpha. My children, Grace and Meghan, do though, and that knowledge profoundly affects me when it bubbles like a volcano letting a subtle burp burst through the cool crust of lava. It is always there smoldering in my thoughts.
This conference is both an inspiration and realization. Speeches about treatments and cures inspire my heart yet they grab reality and shove it squarely in my face. Here Jen! Here! See! Your children have a life threatening genetic disorder. Stop living like they are free from potential liver and lung disease! As I screamed on the inside, I smiled, clapped, and cheered the idea of a cure.
My conflicting emotions startle me. I hold Alphas in my heart. They deal with failing lungs, sick livers, skin ailments, and bodies failing to keep up with their ferocious spirits. Their lives are often interrupted by the need to take a break to catch their breath. Others live with yellow skin or bellies full of ascites fluid. Organ transplants are often the only life-saving outcome.
It is life though. My brain keeps reminding me of that, but my heart wants to run from the reality of my daughters’ Alpha-1. I remain firmly half way between acceptance and denial.
A kind doctor invites my children into his one of a kind pediatric Alpha-1 practice. I want to hug him. Tears well up, but my defenses shield him from my happy yet sad tears. Conflicted, I know that Grace and Meghan will have access to leading research and potential treatments. At the very least, they along with their Alpha-1 will be entirely understood there with yet another life blessing in a kind, for-a-cure hepatologist and biochemist. He gives and gives to the small community of children with Alpha-1. He gathers Gracie and Meghan into his circle of hope. I embrace that hope like a life preserver.
I ride the elevator and head for my hotel room. Upon shutting the door, I break down. I’m overwhelmed with his compassion and understanding. I feel honored for my girls. They really do deserve the very best in life, and today, God’s blessings erupt like lava and shower down on them. I want to shout the news so all will know, but I place my smile mask back on my face. I reemerge from my room and make my way to the memorial service for Alphas who we’ve lost, tissue in hand.
There in that room though, I can let it out. I listen to the brave stories of Alphas, who now breathe free and live their eternal lives among the angels. I tell the story of my cousin, Butch, who left his Alpha life last year. I recount his dimples, bright eyes, and mile wide smile. I hope he hears me.
A lovely lady hugs me close, and tells me that my children will be fine and that I must believe. I say that I believe, but it is tough listening to the stories of Alphas who had believing parents just like me. I don’t know what will happen to Grace and Meghan, but I do know that I’m doing all that I can…and that has to be enough for now.
Jen
Unique But Not Alone http://alphagirls.blogspot.com