Just when I think Gracie understands about Alpha-1, she blind sides me with her youth and immaturity. All of her misunderstanding is completely age appropriate, but leaves me feeling a bit unsettled. Perhaps she stirs up my own denial? I have a hard time remembering that kids need order and not confusion in their lives. Grace's ability to create her own order is quite strong especially since she is innately a worrier. I wonder when or if she'll begin to worry about Alpha-1. Anyway...
Tonight, we attended our local Alpha-1 support group meeting. Grace has always been the kind of kid who asks me questions...questions about anything...and I do mean anything. Tonight was no exception.
"Maaaaahhhhhhmmmmmmm," Grace whispered with a drawn out exhale.
As she pointed to a teenage boy sitting in a wheel chair at the back of the room, she said, "What is wrong with him?"
"Oh honey! That is just Michael. He is sitting in his mom's wheel chair. Michael pushes his mom in that chair."
"Which one is his mom?"
As I pointed to his mom, I said, "Over there in the yellow and green jacket..."
Grace responded, "What is wrong with her then?"
"She has Alpha-1 just like you, Gracie. Her lungs are pretty sick, and she gets very tired if she walks too far. Michael pushes his mom in her wheel chair so she can come to our Alpha Friends meetings. Isn't that nice he does that for his mom?"
As those words came out of my mouth, I was multitasking. Inside, I was thinking about all the little conversations I've had with her about Alpha-1. I know that each conversation doesn't add up to much unless you string them all together for a larger result. I guess I had misjudged her ability to understand what I had explained. This is the hard part of being a parent to a child with Alpha-1. There is no book of rules or carefully detailed explanations...just me and my mixed up assessments of what she can and can not handle. I know that there are no right or wrong answers. I know that I am probably one of the best people who can judge what she can and can not handle, but yes, I make mistakes or make errors in judgement.
"Uh huh Mommy. That's nice," she replied. Her expression said more than her words though. Worry washed over her.
"I don't have sick lungs," she replied flatly.
"We are going to take care of you Gracie even if you get sick lungs, but most people with Alpha-1 get sick lungs when they are adults. You have a long time before you are an adult, and hopefully the doctors will find something to fix sick lungs before then."
"I don't want sick lungs, Mom."
"I know Grace. I don't want you or Meghan to ever have sick lungs, but we don't know what will happen. Let's remember to be happy that you have good lungs and a good liver now. Okay?"
"I guess so, Mom."
Insert heart pains stabbing Mom Jen's mommy heart here.
Tomorrow, hope will return to me. I have moments of weakness and denial though. It is so hard to not be able to make Alpha-1 just pack its suit case and hit the road. I can't take a light saber and stab it out of existence. I can't banish it from our lives. I can't control it or how it will make Grace and Meghan's life different. All I can do is hope and pray and banish my fears. My fears do no good. My fears need to fly into the fray...where they can't hurt me or my girls.
I'm off to call on the angels to whisper their soothing, healing melodies while I sleep.