Life in a Tank Top

It's been a while since I have updated my Blog. I have updated Dan's CaringBridge. I have updated my Facebook. I have updated via e-mail. I have updated via text message, actual phone calls, and even face to face... But, my Blog. Well, it has been neglected and somewhat abandoned. My Blog is more like a time for reflection. And, I haven't wanted to reflect. I have only wanted to keep my head down and keep moving forward one step at a time. This morning, though, seemed like a time ripe with bloggable thoughts and opportunity to write. So, here I am.

Currently, Dan and I are sitting in USA Women and Children's in Mobile. Sarah was just discharged yesterday. The girls' lung functions had both dipped down, and Dr. Sindel deemed it necessary to get them both in, treat them with antibiotics, and make them well once and for all. Well, "once and for all" for now, anyway. There really is no such thing as "once and for all" with CF.

Lately, I have been in really a pretty good place... "Place" meaning that emotional, mental and spiritual place that isn't really a location at all, but is probably far more important to how well a person functions than any physical location could ever be. I took about three months after Dr. Hoover told us Dan would need a bi-lateral lung transplant to completely fall apart. I was basically just going through the motions of everything, and felt like I was walking around in a fog. We were still going back and forth to Birmingham regularly for Dan's hospitalizations, and she was SO sick. Much of the time, even though I never voiced the fear, I thought I was watching my child die before my eyes. And, I kept praying, and crying and pleading with God... Please. I'm not ready. I didn't count on this. It wasn't supposed to happen when she was only 17.

Further, I had helped care for my dad over the summer after his diagnosis of colon cancer. Dad died after Thanksgiving. My relationship with my dad was atypical, but sadness and loss hung over every aspect of life. I felt as if someone had turned me inside-out leaving my tissue and organs exposed to the elements. I hurt. And, I hurt all the time. And, I wasn't sure how to keep going.

I was also angry and driven by ten thousand forms of powerlessness. Our lives had been precariously balanced with treatments and therapies. For the girls' whole lives I had ensured treatments and medications were taken faithfully. We balanced that with extra curricular activities, school functions, family vacations, church and anything else people cram into a life together loving each other. And, everything was punctuated with hospitalizations and at-home I.V. meds. I did all the stuff. I was a good CF mom and I believed that my reward should be simple. My kids should live. And, they should live without a constant thought of dying. However, that was no longer the reality.

But then, time kept passing, and Dan kept living, and even though she was sick, I realized I was wasting time. I was wasting time being sad and sorry and begging God, so I had to shake myself or slap myself or something and get back to the business of living happily in this new reality of life. Dan was perfectly accepting of her medical situation, and approached everything with a completely positive outlook. I, however, had not fared so well. I burst into tears regularly, and friends weren't quite sure how to deal with me. In fact, many of my relationships changed signficantly too. My best friends couldn't make it better, so they stood by looking down at the ground and turning their toes in the sand. They were there whenever I couldn't get up off the closet floor, or when the oxygen bottles clanked together in the back of the car causing me to fall into hysterics. They were there when I was driving down the highway crying hysterically while listening to Bulgarian politics on public radio. But, no one knew how to comfort me, and my pain hurt them too.

So, the B team of friends took over. People I wasn't particularly close to, starting doing for me things I could not do for myself. And all of a sudden, the B Team was the A team, and I was left wondering, "What happened? Life is totally different." And, for a while, I was mourning. I was mourning all the change. My friends and family merged into one big team, and I am forever grateful for the support everyone has offered. Many of my support systems are different. My Weight Watchers meeting closed, my church closed, and my principal and friend got promoted. But, I've made peace with all of that. I'm adapting.

Now, it's June. It has been eight months. And, I feel better. I'm not the same. Not at all. But, I'm better. No longer do I hear The Script on the radio and burst into tears... "I'm still alive, but I'm barely breathing. Pray to a God that I don't believe in. Now I've got time while she's got freedom. When the heart breaks, no it don't break even.... I'm falling to pieces." The song is about a romantic break up, but when Danny O' Donoghue (lead singer) belted, "I'm falling to pieces," I was right there with him.

Everywhere we go, people stare. Sarah gets aggravated, but I don't mind. Dan doesn't seem to mind either. It is odd to see a beautiful, otherwise healthy young girl pulling an oxygen tank. We are thinking of having cards printed saying, "Give to the Cystic Fibrosis Foundation" to give to the people who really stare openly. But, no longer am I mourning the loss of my child before she is gone. I think the realization about what I was doing to myself came when I watched Jared Lawrence, Dan's prom date, back down the driveway with her perched on the front seat of his truck sporting her oxygen canula in a formal gown. Tears were streaming down my face as I thanked God that she made it. She made it to prom. And, as wonderful as that was, I thought of other families without kids with CF, who were perfectly healthy who had lost children in a tragic accident. Those parents did not get to watch their beautiful daughters going to Senior Prom. Those parents didn't have the opportunity before-hand to dread the death of their son or daughter. It was simply over. And, given that death has showed up simply hovering over our lives, it could be an opportunity. And opportunity to love more, to do everything, to live without regret... An opportunity that others don't always get. And, I wasn't going to waste another moment.

In that spirit, we are sneaking out of the hospital. Dan is waiting and Old Navy is having a sale on tank tops for $2.00 each. Life awaits. And, we will be living it wearing layered tanks with a smile on our faces, dragging an oxygen generator behind.

The Little Red Hen

Sunday, our minister told the delightful story of "The Little Red Hen". This Russian folktale is meant to remind the reader of the importance of hard work, and that in life, you can't get something for nothing. I understand that. Generally, I love fairy tales and folk tales. In my classroom, I often use them as teaching tools. So, I understood exactly the message she was conveying in her sermon...

However, my brain rebels. My spirit rebels. My very emotional nature cries out in rebellion, "SCREW YOU, LITTLE RED HEN! You found the grains of wheat! You decided that you wanted to plant it! So, you live with it and do it yourself. Don't try to suck me into your plans!" This all goes back to my latest spiritual struggle with the concept of "one more thing". I think I have actually blogged about it before... I really hate for people, or the universe, or circumstances to assign me "one more thing" to do.

I mean, I can relate to the "lazy cat". What if the cat isn't really lazy? The Little Red Hen, after all, is a known busy body who thinks she knows what is best for everyone. She looks around, sees the cat stretching and lying down to take a nap, simply assuming that the cat is a lazy do-nothing. What if the cat is running around the barnyard to keep the rodent infested place free of disease? The cat, then, only takes a nap out of sheer exhaustion after a morning of chasing mice, trapping mice and catching mice... Mice! With their nasty little whiskers and scratchy little claws clamoring all over the barnyard nibbling holes into those tasty bags of corn that The Little Red Hen just takes for granted will be scattered daily for her and her chicks to enjoy. Mice pooping all over everything, spreading bacteria and filth and disease all over the barnyard! Maybe the "lazy" cat meowed exhaustedly, "Not I" when asked to help out of a feeling of being overwhelmed and purely exhausted.

And, what of the dog? Isn't he out herding sheep all day? He is running around like crazy keeping the sheep from straying too far into the meadow. I even heard that he came face to face with an insanely criminal wolf who had dressed himself in sheep's clothing. The dog is thinking, "I didn't realize I had to be an undercover agent for this job!" But, he rose to the occasion. He sniffed out that wolf, despite his clever disguise, and chased him off so that those sheep might live another day. He had only just wandered back into the yard when that prissy Little Red Hen was all over him, "Who will help me reap the wheat?"

"Reap the wheat? Reap the wheat? I didn't ask you plant the damned wheat in the first place! Reap it yourself!" is probably exactly what our extremely weary friend was thinking. Haven't you ever heard the phrase, "Dog-tired"?

And, finally, the duck... Why couldn't she help? I mean, they are both birds. Surely they could have forged some sort of partnership based on their fowl status alone... I probably shouldn't share this, but I think under these circumstances, it is necessary. The duck has serious emotional and mental problems. The duck, had a nest to sit upon each and every day. However, she also believed wholeheartedly that it was her duty to paddle around the pond each day, working hard to present an image of perfection and serenity to all who gazed upon her. While she floated gracefully along atop the water, people were unable to see all the paddling she was having to do beneath the surface. You see, although no one told her, the duck felt it was her job to present an image of peace and harmony to all who visited the farm. No one guessed how hard her poor little webbed feet were working beneath the surface just to keep herself afloat. Thus, each day, after working hard to present this picture of perfection, she returned to her nest to sit, nurturing her eggs and waiting for her precious little ducklings to hatch.

One day, she came back to her nest to find an extra egg there. It was absolutely huge! She had no idea where the egg had come from, but she knew that the life inside could not survive without her ministrations. Well, you know what happened from here... Her ducklings hatched and she proceeded to rear her precious ducklings as best she could. (Most people don't know this, but her husband had run off with that terrible Goosey Loosey, so she was on her own with the ducklings.) She was also doing her best with the large, gangly gray adopted duckling who didn't fit in with any of his siblings. Most days, the duck dragged herself to the fence line where she received free counseling from the kind cow. These talks were the only thing really helping to hold herself together since the stresses of single motherhood, rearing a whole brood of children (along with one adopted one), and doing all of her duties while trying to maintain an air of peace and serenity for onlookers nearly drove her to the brink of insanity!

So, when The Little Red Hen approached her, her eyes welled-up with tears and she hung her head in shame. She felt that she should be able to help, but she just didn't have another ounce of anything to offer to anyone... She was emotionally, physically and spiritually drained.

These are the thoughts that ran through my mind in church on Sunday as my minister spoke. Obviously, they had nothing to do with the intent of the lesson. But, they provide a basis for understanding my own personal spiritual struggle as of late. And, as much as I can justify why the cat, the dog and the duck couldn't help and how demanding The Little Red Hen was being, there is a lesson in here about humility for me, personally. If I believe that God works through people, then I have to believe that God manifested in the form of the Bitchy Little Red Hen, too. The cat, the dog and the duck, (all me), even though they have numerous good reasons for not wanting to help, are still exhibiting behaviors steeped in selfishness and self-centeredness. Only in being willing to join in with God's other people to do "extra" assignments He presents daily, am I able to experience true peace and serenity that comes with the humility of being willing to rise to whatever occasion with which God is presenting me.

Spending so much time in mental or emotional rebellion is more exhausting than doing "one more thing". If I can learn this... If I can really "get" this idea about trusting God to give me the strength and abilities I need to do the things that cross my path daily, with an attitude of gratitude and loving service, I will be so much more peaceful and serene... Some days, I'm there... Some days, I'm just faking it, like the duck. Which, I guess, is O.K. too.

All of that being said, I know I also have a tendency to take on too much at times. Thus, being compassionate to my cat, dog and duck selves is important, as well. There are times when I need to say, "Not I". However, that means that I don't get to eat any of the bread when all is said and done.

But, the really amazing thing is when I have true moments of greatness. There are times when I can be like The Little Red Hen, only at the end of it all I can say, "I know you didn't help me plant or sow or reap this wheat. I know you didn't help me grind the wheat into flour. I know you didn't help me bake the bread... But, please, join me anyway... I would love to share my bounty with you because I am so terribly grateful that you are all here. Thanks for taking care of the mice, Lazy Cat. Thanks for herding sheep and scaring away wolves, Lazy Dog. Thanks for rearing your ducklings and working hard to mother a duckling that isn't even yours biologically, Lazy Duck. You all enrich my life. For that, I am grateful. Come rest your weary bones with me and have some bread."