This is what a stranger said to me last week as I awkwardly attempted to maneuver my oxygen on wheels around tables and chairs to exit a restaurant. A week before that, in another restaurant, a girl waited for me outside the restroom as I took Harrison potty to hand me a note. I thought she was waiting for the bathroom but she just handed me this note and quickly walked away. The note said she would be praying for me and that she believed in miracles. It was a very humbling moment. People are SO GOOD.
I looked at the man who had said, "God bless you, honey" to me. He had kind and sincere eyes, and I held them for a moment and then smiled and said, "thank you." The familiar lump of gratitude rose in my throat (that lump of gratitude has been showing up a lot lately!) and stayed there the whole ride home. Because of the "lump," it was hard to talk, so instead I just reflected on a few things.
Can I share?
I remember when Lexi had to start wearing oxygen. It was hard for her and it was scary for all of us. I remember the first day she wore it to school and how she bravely rolled it into her fifth grade classroom and how crushed she was when a boy called her "tube-face." I also recall how strong she got (emotionally) and how she used humor to diffuse her self-consciousness. When she noticed people staring at her she would startle them by quickly looking at them and pulling a face or start coughing violently and comment loudly that she hoped she wasn't still contagious! She was constantly cracking us up. She also would dress up her tank and even gave it a name. Lexi, with wisdom beyond her years, made the best of her tough situation.
I have dreaded crossing the "CF milestone" of supplemental oxygen for years. Lexi only wore oxygen for a few years before she got listed and in my mind, I knew that when it came down to needing supplemental oxygen, the situation was serious. When I could not get my O2 sats to stay up this last hospital visit, I got "the oxygen lecture" from my Dr.. I will never forget him drawing his diagram on the white board in my room and saying matter-of-factly, "It's time Sharlie. You will be doing permanent damage to all of your organs if your sats keep dropping and you don't use supplemental O2." It was hard...and scary. I thought about Lex a lot. I determined to channel her strength and humor and just deal.
The first few days home were kinda tough. Ryan and I ran some errands and I was acutely aware of people doing double-takes and looking at me. I even heard a girl ask her mommy "why does that lady have that thing on her face?" Even though I was embarrassed, I just smiled. I was self-conscious and it was an adjustment that I wasn't sure I would get used to. One of those first nights home, I was putting Harrison to bed and I was performing one of our night-time rituals of telling him something on his face that I love and then kissing it. I would say, "i love your eyes" and then kiss his eyelids, and, "i love your cheeks" and then kiss his cheeks, etc. etc. After I was done kissing all over his face, he looked at me and said, "i love your oxygen" and reached his little head up to mine and kissed the tubing under my nose. It was a blessing, a tender mercy, an epiphany. As my eyes blinked back the moisture that threatened to spill over, I thought to myself that if Harrison loved me and accepted me with my funny oxygen tube face, then I really didn't care what anybody else thought. It was a little gift that allowed me to see myself through my son's eyes of love and love myself a little more in return.
Since then, I have come to appreciate my supplemental O2 on a whole different level. Yes, I still get frustrated sometimes with the feeling that I am on a leash and I still get self-conscious sometimes when I see people staring but, I also realize that this cumbersome little machine is a gift. It is not only helping me stay strong enough to get a transplant, but is also attracting love and light to me through genuine good people like the man in the restaurant. On the car ride home I realized...for the most part, people aren't staring, they are CARING. I know, cheesy, but I don't care. They are looking at me and feeling empathy, they are hoping that I'm okay and maybe even appreciating their healthy lungs a little more. I don't like to be scrutinized but I will take all the healing love and prayers I can get and if the tube on my face elicits more of that, I'm grateful.
I know God IS blessing me and I know he blesses the kind, caring and wonderful type of people who would say, "God bless you, honey" to a hopeful girl pulling an oxygen tank.