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.

Peeing My Pants

Dan is shake, shake, shaking in her vest. We are in the hospital in Birmingham just vegging out and watching mindless television. She hasn't felt well today, and even began running a bit of a fever this afternoon. Generally, she is better than this after she has been on I.V. antibiotics for more than a week. I know she is frustrated. She wants to feel well. And, I want her to feel well.

I was supposed to come home today, but stayed an extra day. (That seems to be a recurring theme, since that is what happened during my last visit.) But, it's okay. I love my beautiful Dan-Dan and it is an honor to be here with her, shivering in my jacket since she keeps the room like an icebox. I love the Mom-Job. And, most of the time, we have fun together. Even in the hospital... Even with things like lung transplants, and weight gain requirements, and strange fungal infections looming over us.

But, honestly, I don't want to talk about sad CF stuff today. Sometimes I get sick to death of my own drama. I just want to take a commercial break from worrying about Dan's CF stuff, worrying about Sarah and how she is handling her sister's recent turn of events, worrying about how all of this could possibly affect Micah, considering if I am living as a faithful Child of God, and beating myself up for feeling as if I am unraveling at the seams part of the time. So, for the remainder of the time I am typing this post, typical CF fodder is off limits. Instead, I want to focus on some of the more curious and amusing aspects of this life we lead.

The other night, Mom and I were driving up to Birmingham in a torrential downpour. I mean, the water was coming down in buckets. J.R. was following behind us. (Truthfully, I had been upset earlier, so Mom didn't trust me to drive up on my own, so she was guarding me from the passenger seat.) And, I was entertaining her with funny stories about my kids at school. We were laughing, and driving slowly and carefully to navigate the weather. I could only see a few feet in front of me, until lightening flashed intermittently, briefly lighting up the highway and the surrounding woodsy tree-lines stretches of nothing that line I-65. We had planned to travel up because Dan was scheduled to have a G-tube surgery, but the surgery got cancelled and we still wanted to make the trip up to visit. So, I packed my little rolling hospital suitcase, my oversized comfy pillow, and 12 small bottles of oxygen. I packed the oxygen with the plan of giving it to Grammy and Grampy so they can bring Dan home when she is discharged from the hospital.

Now, I'm not sure if the general public is aware, but oxygen is flammable... And, those bottles are kind of dangerous. When instructed on the use of oxygen, one is taught a lot of safety rules about correct procedures for handling oxygen safely. In fact, during the training session, the words "potential missile" and "explosion" were clearly mentioned. Now, initially, it freaked me out. But, now... We're kind of pros. We just chuck those bottles in the back and move on down the road.

But, driving down the road in the torrential rain, with lightening flashing and thunder rolling, I had an acute awareness of the oxygen bottles resting in a duffle bag in the trunk of the car. And, imagine my keen, spine tingling, hair-standing-on-end experience, when a fire ball fell from the sky probably twenty-five feet to the right of the car... My little, red Jetta careening down the road with me driving and Mom in the passenger seat carrying twelve little potential missile-like projectiles with the ability to explode and kill or maim us all, and maybe even some innocent travelers navigating that same stretch of I-65 on that rainy, dreary night. Well, holy cow, Batman! That was something to consider.

I picked up the cell phone and exclaimed to my dad, J.R., "Did you see that?"

He replied, "Yep! I just peed my pants!"

And, it was a pee-your-pants kind of moment. I have never been that close to lightening in my life. It was amazing and scary and comical. Recently, I spend more time than I would care to admit thinking about life and death as it relates to me. I spend more time than I would care to admit thinking about living life as it is, and living life after the scary, miraculous lung transplant for my daughter. And, I spend more time than I would care to admit thinking about what life will hold for me if I have to go on without one of my kids. It's morbid. It's sad. And, sometimes it leaves me frozen. (And, I realize I am violating my own commercial break a little here, but I say all of this for a reason.) As that lightening bolt crashed down hilariously and dangerously close to my car filled with oxygen tanks, it became glaringly apparent that none of us have any kind of a handle on life and death. It could have been over quick as a wink, and I would have been staring at God, hands on hips, saying, "You're KIDDING me, right?!"

So, I was jerked back into the crazy reality of my life, and the almost comforting understanding that none of us is promised anything. Life is a gift. And, it is fun. And, I am ever so grateful for the moments that really make me want to pee my pants.

Magical Inhalation

Sarah is enrolled in a drug study for inhaled Levaquin. In fact, she was the last patient in the Phase 2 trial before it goes to FDA approval to move on to Phase 3. (We considered blowing it off since school started, but given the importance of moving the research along, agreed to go through with it.)

All the particulars are topics for a different day... Maybe the next day Sarah is hooked up to I.V. waiting for periodic blood-letting as outlined by the procedures in this trial. I just haven't had much time for my quirky, bloggy updates... But, preliminary results show a marked improvement in lung function after only a week on inhaled Levaquin. Large airway functions increased by 10%, while small airway functions increased by 18%. And, these improvements were after Sarah developed a cold.

Dan did not qualify for the study because she was sick this summer and had to be on I.V. antibiotics. However, she is snuggling up REALLY close to her sister as she does these treatments in the hopes that some of this magical elixir wafts her way.

Child-Like Faith

I receive the Daily Word, a daily meditation publication from Unity, each day via e-mail. When I opened my Inbox this morning, this is what I received:

Today's Daily Word - Wednesday, June 10, 2009
By Example
I lead, and I am led by example.
We may not always be aware that little ones are paying attention to us, learning how to love, care, and trust. Our acts of kindness toward children are gifts from our hearts. Praying with children demonstrates our faith and an expectation of good.
And often, it is the children within our midst who lead us by example. Children know without question that God answers every prayer.
Children see majesty in even the most minute elements of the world: the varieties and aromas of flowers, the colors in a rainbow, the splendor of a sunrise.
As adults we lead by example. Let us also take the time to let our children be our teachers and guides.
"Remember your leaders, those who spoke the word of God to you; consider the outcome of their way of life, and imitate their faith."--Hebrews 13:7

And, as I read this, know that I am grateful for this Truth. It has been so enlightening to watch Micah looking at flowers or touching a kitty. She looks at each new thing with such amazement and wonder that it makes me look at things with a gratitude for all the simple things that exist in this world. She is my teacher, as much as I try to be an example for her.

Then this thought brings a measure of anxiety. Have my children learned their faith from me? And I am reminded of this story... This story from Matthew that makes me crazy... This story that leads me to beat myself up mentally:

Matthew 15:21-28 (New International Version)
21Leaving that place, Jesus withdrew to the region of Tyre and Sidon. 22A Canaanite woman from that vicinity came to him, crying out, "Lord, Son of David, have mercy on me! My daughter is suffering terribly from demon-possession."
23Jesus did not answer a word. So his disciples came to him and urged him, "Send her away, for she keeps crying out after us."
24He answered, "I was sent only to the lost sheep of Israel."
25The woman came and knelt before him. "Lord, help me!" she said.
26He replied, "It is not right to take the children's bread and toss it to their dogs."
27"Yes, Lord," she said, "but even the dogs eat the crumbs that fall from their masters' table."
28Then Jesus answered, "Woman, you have great faith! Your request is granted." And her daughter was healed from that very hour. - http://www.biblegateway.com/passage/?search=Matthew%2015:21-28

This story just kills me. Since Dan was born with meconium ileus, a bowel blockage, and her intestines had ruptured in utero, I have been on a quest for faith. Until then, I believed that intellect would be my saving grace. And, don't get me wrong. I have great faith is academic and educational pursuits, or I wouldn't be a teacher. If I didn't believe that education could change the world, I wouldn't bother, because truly, in many instances, ignorance is bliss... However, when I was told at the age of 23 that I was going to have a child with a chronic, terminal illness (That's how CF was presented at the time...), my heart needed something more. I knew I couldn't face CF with just education, because the more I learned, the more frightened I became. I needed faith. I needed to believe that miraculous healing could take place if only I believed strongly enough.

And, then, when I began learning about spiritual healing, I was introduced to the above story from Matthew. And, frankly, it ticks me off... As I sit in the hospital with Dan, who is currently NPO (not allowed to eat or drink anything) until her surgery at noon to place a port-a-cath in her chest, I just feel pissed. So, if I am "getting" this story, a Canaanite woman approached Jesus and asked him to heal her daughter because she was possessed by demons. I don't really know, historically, what a Canaanite woman is, but I am assuming she didn't follow Jewish traditions because of the reference about taking children's bread and tossing it to the dogs. (If anyone is reading this and understands the historical interpretation of this scripture, please let me know... Hint... Hint... Reverend Christy) So, then this woman kind of smarts off to Jesus and says that even dogs will eat crumbs that fall from the Master's table. I can't actually tell if she is smarting off or trying to stroke Jesus' ego, but this is precisely my mode of operation when I am trying to get my way... Just ask my boss... And, all of a sudden, Jesus turns to her and tells her that her faith is so great and based upon this, her daughter was healed that very hour. Ta Dah!

And, this is exactly what I have been wishing, and hoping, and praying for since Dan and Sarah were little. But, this is the FURTHEST thing from how God works for us. I desperately want a Ta Dah! But, spiritual healing isn't like that for me. And, I guess because it isn't like that for me, I'm not able to convey something I haven't got to my girls... In the past, this has been the reason for my self-flogging. My mind tells me, "Christy, if you were just more spiritual... If you didn't fall into fear and doubt every time one of them gets sick. If you didn't feel overwhelmed and question why this was happening at this particularly ill-timed moment... If you just had greater faith, your girls would be healed."

Recently, I attended a Unity retreat. The focus of the retreat was Hands On Healing, by Dr. Glenn Mosley. It was a 2-day retreat in which I received training in hover touch healing modality, based upon Eastern philosophies surrounding Chi energy. Of course, my attendance at this particular retreat just demonstrates my continuing pursuit of the Ta Dah! type of healing. However, Dr. Mosley didn't talk about Ta Dah! healing. There were no snakes being handled. People didn't rise from their wheelchairs and walk. In fact, he talked about being open to all modalities of healing. And, in true Unity fashion, making use of the expertise of doctors and health professionals, but embracing a healthy lifestyle and changing diet in addition to using the Hover Touch healing methods. And, during the workshop on the second day, he said something that troubled me deeply. He said that my guilt and non forgiveness can get in the way of being able to convey healing energy to others. (Now, he wasn't speaking directly to me... He was speaking to the main group, but he may as well have pulled me aside and wagged his finger at me while giving me a good talking to.) I left the workshop and entered the prayer room in tears... Finally, something changed in my heart, and I began to understand that I have to quit beating myself up for being a genetic defective and passing this illness along to my girls... Not because it isn't true at some very technical, medical level, but because the guilt and non-forgiveness get in the way of healing for my girls. And, the other enlightenment that I had is that the guilt and non-forgiveness get in the way of my healing. God loves me even more than I love my children. So, given this, I'm sure He hates what I do to myself mentally and emotionally every time they get sick.

I went home with this small revelation, and attended church last weekend. We always say the Lord's Prayer after our meditation, but our version of the Lord's Prayer is a little different... We say, "Forgive us our offenses, as we forgive our offenders." And, all of sudden I understood that CF is an offender. I can only forgive CF as an offender as I forgive my offenses, or whatever I perceive my offenses to be... And, my offenses are great in my own mind. I work so hard to be CF mom extraordinaire, but I fall short. I get scared. I worry. I don't keep up with the insurance and medical billing like I think I should and then become overwhelmed with the mounting medical bills and the annoying insurance denials. I forget to order meds sometimes when the girls run out, and they go without for a couple of days. I don't lead the girls in rigorous aerobic exercise programs that are sure to make their lung functions better. I don't even insist that the girls do a daily Yoga practice, which would also enhance their breathing capacity. Now, I do a lot... But, my mind doesn't give me credit for all of that... It's narrow, mean-spirited focus is always on my short-comings... Always magnifying my offenses into mountainous structures making it so difficult to sit in the quiet knowing of God's love. But, at the retreat, alone in the prayer room, looking at a picture of Jesus and a little statue of Buddha sitting in front of a brownie with a small bite taken out of it, (Unity people have quirky senses of humor), I understood that I have to learn to forgive myself. And, later in church, I understood that I have to learn to forgive my mind and CF, for those are my primary offenders.

In the grand scheme of things, I'm really a pretty good mom. What is my major crime? I love my kids so much that I want a miraculous healing for my girls. I want them to be magically cured of CF, so they don't have to take medicine and do treatments and get surgeries and deal with more in their lives than most people deal with in a lifetime. I want this so much for them. But, God deals in miracles, not magic. And, really... It isn't miraculous at all. It is quiet moments of realization in which I can give myself a break... It is quiet moments of knowing that it is all really O.K., and that my children are being healed... But, the healing doesn't necessarily look like I think it needs to look. I don't get to play the Caananite woman in this life. But, who the heck really knows? The Bible didn't do a follow-up and tell about how maybe the very next week the woman's daughter was again plagued by demons and she had to have great faith again. I keep wanting the faith job to be done, so that I can coast merrily in the "land of spiritual make-believe".

However, it just is not to be. And, honestly, I don't want that anyway. I have been blessed to have been chosen to be the mom of Danielle, Sarah and Micah. I am blessed with wonderful friends who support me with prayer and help and dinner deliveries. I am blessed with a fantastic husband who gets up every morning and gets the girls going with treatments. I am even blessed with an ex-husband and his new wife who come to the hospital every time and make sure the girls are always covered by secondary insurance. I am blessed with grandparents galore who come from Pensacola to help, or just live next door and help every day of their lives. And, I am blessed to have a CF doctor who is committed to achieving wellness for my girls. The healing presence of God is in our lives. It's just a gentler, quieter on-going story.

Beauty is in Getting the I.V. on the First Stick

Here we are again... Back in the hospital. Pulmonary Function Tests revealed results at 39% for large airway function for Dan. So, Dr. Sindel wrote the orders, and we skipped merrily over to USA Women and Children's.

Now, a couple of interesting things happened upon our arrival... First, as we were checking in at admitting, Sarah began having a serious coughing attack. This was precisely the type of curl your toes coughing fit Sarah calls an "allergy attack". She had only a few short minutes before been trying to describe the attack to Dr. Sindel. The admitting clerk waved Sarah over to get her hospital bracelet on, and I had to explain that Danielle was the one being admitted. The poor clerk looked at me like I was obviously on some type of hallucinogen, but put the hospital bracelet on Dan's arm, against her better judgement.

The next interesting thing that occurred was that we checked in at 5:30, and no nurse came to see us until 7:30. Well, this was fairly predictable. You see... Shift change is at 7:00, and I'm sure the day shift nurse, (who we never even laid eyes upon), said to herself, "I'm not doing an intake... Leave that for the night nurse."

When the night nurse wandered in, I almost laughed. The last time Dan was in the hospital, I couldn't stay. Grammy and Mimi took turns staying, along with her Dad and Dave. Well, Dan didn't fair so well. She ended up getting stuck a lot, and nurses were unable to find the vein or prevent it from blowing. It is a fairly traumatic process. But, this particular night nurse is one that is infamous in our house. Both Dan and Sarah despise her. We have much history with this particular nurse. She is older, and sports a very large mole directly on the tip of her nose. Although, it really isn't just the mole that creeps the girls out... She comes in the middle of the night, flips on the light and talks loudly. She doesn't make an effort to catch the I.V. before it beeps, and things generally don't get done in a timely manner. Usually care from this nurse means less rest and more disturbance and upset. Sometimes I have been tempted to say, "Take some time off... I'll take this shift for you. Just bring the drugs."

The funny thing is that we always get this nurse, which leads me to believe that she probably sees the girls names on the board and asks for them. And, I wonder... Does she like them? Doesn't she feel the disdain in the room? Does she mistake the curt answers and uncomfortable grinning for genuine affection?

But, tonight when she walked in, I just told Dan to trust the process... And, this loud, annoying, disruptive, mole-on-the-tip-of-the-nose nurse was able to get the I.V. on the first stick. Suddenly, none of the annoying past experiences mattered. All that mattered was that she got the I.V. and saved my kid a little bit of pain. And, she saved me a little bit of feeling that horrible hopelessness that plagues me each and every time one of my beautiful girls has to get stuck. And, I told her, "Thank you so much..."

Now, as I type this, it is 11:30 p.m. No I.V. meds have been hung. No one has even offered us a cup of ice... But, I know that all is well. And, I am so grateful that she was able to do exactly what we needed her to do. Get the vein on the first stick without blowing it... And, because of that, she looks like Miss America to me.

The Eagle Has Landed!

So, we just got the coolest new CF thing ever, and the girls aren't here to enjoy it! It is called an e-Flow. It looks like a little UFO, and it is designed to nebulize medications at a much faster rate. Dave and I played with it last night.

Not to worry... We put regular water in the e-Flow, since neither of us actually has CF and don't need any medicine. However, I have to say that I have a new respect for Dan and Sarah since inhaling nebulized water made me burst into such a coughing fit. Still, we couldn't resist and just had to try it out.

It runs off regular double A batteries. (It also has an AC adapter.) Excitingly, it is small and portable and quick, quick, quick! For those who aren't aware, people with Cystic Fibrosis spend a great deal of time taking breathing treatments and doing chest physiotherapy, just to be able to breathe. The other benefit is that it is almost entirely silent. Yes, that's right! SILENT! When the girls are doing treatments, my eardrums are usually ringing with the blaring of the television over the nebulizer and the vest.

The girls also got a new Smart Vest system last week. It is much smaller and easier to transport than their old system. We are working on getting a smaller 2nd vest, as well. Somehow, the insurance companies have never realized that the girls are not Siamese twins. We have always only had one vest machine, making it impossible for the girls to travel separately. Don't get me wrong, we have muddled through band trips and Italy vacations with the Acapella, but it doesn't work nearly as well for the girls.

Anyway, I'm completely thankful for all the wonderful new technology that has become available for my children. And, I absolutley love the idea of breathing through a little UFO. Beam them up, Scotty!