Tuesday, June 16, 2009

Danielle Update

As of today, Dan is still in the hospital. She has been rumored for discharge for the past few days, but Dr. Sindel has advised keeping her a little longer because she is coughing up red mucus, which indicates blood. With CF, this happens sometimes with a serious lung infection.

On the bright side, the sputum cultures have indicated that Danielle is currently receiving the correct medication to treat what ails her. Nothing new and scary grew in the sputum culture. In fact, she is no longer growing fungus, so one of her medications was discontinued.

Thanks for all your love and concern. You have no idea what your prayers mean for all of us.

Love and Light to Each of You!

Wednesday, June 10, 2009

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.

Monday, June 08, 2009

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.