Thursday, September 8, 2011

"God Bless You, Honey."

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.

22 comments:

Zachary Ross said...

Beautifully written Sharlie! You are such an inspiration to me and to thousands of others! We miss you already...we'll have to come visit real soon.

Miq said...

I love you Shar. xoxo

Cormorant said...

:) Harrison is just like his momma, an angel!

Rand0m1 said...

I'm so glad that you are getting the positive reactions - I think in the long run we experienced more confusion on the faces of those that saw Sara with hers than anything else. Reconciling a young woman with oxygen was something many people had a hard time grasping.

I know that Sara was very thankful for her O2 - it was what allowed her to stay so strong and as fit as possible during her 2-plus year wait for lungs. She was able to work out, climb stairs, even swim laps (one at a time, with a break and coughing in between - but swimming it was!) as well as allowing us to enjoy things like motorcycle rides (the risk of ending in an oxygen-fed fireball are actually quite low ;).

And for every jerk that tried to get us kicked out of the movie we were watching, there were the others - the ones that thanked us for having it, for reminding him of his recently passed mother - that hearing the pulse through the movie made him feel like she was still there - and for the rare brave ones who gave a kind word or happily helped the strong young woman who happened to be wearing a tube.

Wear it with pride, appreciation and verve, girl! It will serve you well and lots of people love you with or without it!

Jen Larsen said...

We LOVE you Shar and you have lots of prayers coming from Malaysia!

Bunny Barth said...

Sharlie, YOU are the angel! Know that our family is loving you and praying for you every day.... Bunny and Bud

Nancy said...

Sharlie, this is the beginning of your new journey. You will shine as you always have and your new lungs will be new wings. Keep flying!

Emilee said...

Well said Sharlie! I had to wear continuous O2 after Cambree was born. I have/had very similar feelings that you do. My self esteem really went for a loop. Its hard. I love your attitude and your insight. You are beautiful in all aspects. Thanks for sharing!

Prayers in your behalf
Emilee

Bethany said...

You are inspiration to each and every one of us. Beautifully written...thanks for allowing us to be part of this

Stacy Harmer said...

Thanks for sharing Shar! I've been thinking of you and hoping you are well and settled into your new home for awhile. We love you and pray for blessings to be showered down on you!

Hollie said...

Hi Sharlie, this is Hollie (Sirrine, now Lunt) from Encinitas a LONG time ago...Because I'm facebook friends with Zak & Chelsea, I saw a comment about your blog post and checked it out. You are a great writer and have the spirit of an angel for sure, it brought tears to my eyes and I had to say hi! I have great memories of knowing your family. My favorite memory of you is when I was 14, your mom asked me to teach you and your sisters piano, something I'd never thought of doing, but I've continued to teach and learn since then and have loved it! I've got a picture of us in a scrapbook somewhere I'll have to get to you. It's been a blessing to know you and you'll be in my prayers :)

Leah said...
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Leah said...

Wow, Sharlie, that was soooooo beautiful. You are beautiful in every way. I love you.

Inhaling Hope said...

Hi! I am a 27 year old female CFer. Following your journey and reading about your precious little boy is such an inspiration! CF is a horrendous disease, but seeing strong women (and men) battle the disease with everything they have gives me motivation to do the same!

I hope to be a mom someday too despite this awful disease. Reading about your little boy's unconditional love for you (and your oxygen tube) is so touching. I will be thinking of you through the transplant journey!

Debbie Smith said...

Sharlie, you are an amazing woman and your blog is so inspiring. I am just visualizing and praying you are once again breathing freely and hiking up hills with your family. I watched you and Ryan climb the hills in Arizonia at a Klemmer course and marvelled at your strength and determination

Cormorant said...

Sharlie! I, too, was sad to miss you while we were in SD! It was fun meeting your mom--though I felt like I already knew her and how great she was from your blog. :) We were all recovering from sicknesses and I knew you were busy packing, so that's why I didn't try to see you. Hope your move/transition is going well so far!

Teresa said...

what a sweet post, and a sweet little boy you have. thanks for sharing that.

Nina said...

Dear Sharlie,

you are such a strong person. Don't let people's looks wear you down-everyones fighting a hard battle, yours is just easier to see...I'm working in an ICU, and there are a few things that, in my experience, make a difference after such a procedure like CF and any other life threatening disease : having something to live for ! Your will to survive is so important. It will get you through long and hard days ahead of you.
Theres a proverb I often remind my patients of when they are having a bad day: You only get the life you are strong enough to live! Don't stop fighting!

Sunnybec said...

Hi Sharlie, I have just found your blog and have become a new follower. I have only read a small part of your blog and Give Forward, but you have touched my heart. CF only entered my life 6 years ago, yes I had heard about it but didn't really know much about it. 6 years ago my niece had a little girl, the hospital offered her a free check for CF and she thought "yes why not", there is no CF in either of the families, so we all assumed this routine check would come back negative. The results were position. I am sure you will know how we all felt, the tears, the grief, the feeling sick, the "why us". My Gt. niece is a lovely bubbly happy little girl and is doing really really well. The fact that you have been able to have a child gives hope that one day she will be able to do the same. I will follow your progress every step of the way and will be praying for you, along with everyone else. Big Hugs Linda x

Zoe said...

Whenever I see a person with a tube or a scar, I say to myself "there is a fighter!" Maybe it seems like i stare, but i only do it because it takes some time to remind yourself that not everything is for granted. Wear your oxygen with pride. You teach people around you to be strong and grateful. Thank you for the beautiful post

Katrina said...
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a blog full of weldons. said...

you rock girl! that's alli have to say! rock that O2 and don't look back...i love your attitude and your honesty. i'm so glad i found your blog! i saw your link on under the sycamore (ashley is such a dear) and i've poured over your posts and i love seeing how you've raised your family in faith and bravery. God is using you in such a powerful way!!