Sunday, February 28, 2010

The Rod and the Staff

I'm up. It's officially 3:12 a.m. and I'm up. I got tired of just lying there pretending to sleep, so I decided to get up and write. Tonight my mind wasn't plagued by the racing thoughts that sometimes haunt me. It was annoyed by one line in a really beautiful song I was listening to earlier. I have a dear friend, a Secret Pal, in fact, who gives me different CDs with uplifting songs. One of these CDs has an incredible rendition of the 23rd Psalms. I'll have to find out the artist and post the name here, but I am unwilling, even though I'm up, to trod out to the carport in my underwear to retrieve the case right now.

But, the 23rd Psalms has always been one of my favorite verses. Probably, it is a lot of people's favorite since it is kind of famous and all that... I'm mean, it is a goodie for funeral choices. Recently, it was read at my dad's funeral. But, tonight, as I was lying there trying to sleep, that line, "Thy rod and thy staff... They comfort me..." And, ahh... I felt the peace that usually comes... A little spiritual connection... And, then I thought, "Wait a minute, why is God comforting me with a rod and a staff?" Why not a nice blanket? Why not wool or linen or feathers? Didn't they have soft, squishy things during Biblical times? Sure they did. Or how about a hug? My friend, Cora, gives the best, mushiest, 'I love you even though I'm not saying it' kind of hugs... But, God is choosing a rod and a staff to comfort me. Those are hard and stiff and very straight.

So, I got up and Googled "rod and staff". Well, I discovered that Rod and Staff is a publishing company for homeschooling materials, which was kind of interesting... But, then I stumbled upon all kinds of websites discussing the merits of beating children and defending it with Bible verses... Hmm... Still not what I was looking for exactly. Then, good ole Wikipedia came through. A Shepard's rod and staff is used to guide sheep to insure they don't wander into dangerous territory. That's kind of nice. God is keeping me in a safe place where he can look out for me. I like that idea.

Then I also discovered that the rod and the staff were considered to be a symbol of authority and sometimes to have great and miraculous powers. The Red Sea was parted by Moses' rod... He also brought water from a stone using his rod. These rod and staff miracles were during the time of the Plagues of Egypt. And, I knew about those miracles. I mean, I kind of have an embarrassingly little general knowledge of Biblical history that I remember from children's Sunday School, and thank you History Channel for the specials that sometimes enlighten me... Anyway, I also learned something new... Moses was creating his miracles during the Plague, but did you know that the whole Plague of Egypt started with a rod and staff miracle?

Evidently, Moses had a sidekick... Aaron. He and Aaron visited the Pharaoh to try and warn him. Well, the Pharaoh wanted some proof that Aaron and Moses were really trying to tell him something "Divine", so Aaron threw his stick down [clank and clatter] and it turned into a serpent! Holy Cow! (Oops... Is that blasphemy?) Well, the Pharaoh didn't want to be outdone so he ordered his Sorcerers to throw down their own rods, and yep... You guessed it. They turned into serpents too. But, Aaron's rod/serpent gobbled up all those other ones. This was supposed to be a warning sign, but the Pharaoh still didn't listen. The Bible says he was stubborn, but maybe he just didn't understand the sign... Maybe he is like me... Looking for signs, misunderstanding the signs, seeing signs, missing signs... It gets very confusing.

Anyway, later on, during the another plague, (which were very common in Biblical times, I'm guessing) Aaron's rod produces flowers, plants and ripe almonds. What happened to this rod? Some believe it was preserved in a Tabernacle for the Aaronic Priesthood, but the Jews believe it was used to slay the giant Goliath and was passed down through King of David's lineage.

Of course, this is all just Christy's version, and you can Google it yourself to read the real version because I'm sure my summary is missing some key elements. I have to break the Bible down into an almost kindergarten-like version because I find it confusing and sometimes even a little scary. In fact, there are many parts of it that I don't think children should be studying until they are much, much older... But, that's a topic for a different day.

For today, I would love to tell you that I am full of faith, but the truth is, I am plagued with fear. There's that word again... "Plague"... Maybe I do need a rod and a staff. I am overwhelmed with all that life has offered lately. I walk around feeling like someone turned me inside out, and I just want some kind soul to gently turn me right side out again like I sometimes have to do with the kid's shirts at school.

I worry for Dan. The other day, my doctor-friend (Yes, you'll be happy to hear I am under a physician's care) told me that I have to find a way to have some fun because this is my "new normal". And, still, I am struggling. I keep hoping that Dan will come home and somehow, through the miracle of consistent exercise and faithful treatments, her lung functions will improve. I watch her trying to gag down enough Pulmocare to help her gain weight. She struggles with the decision of whether or not to get a G-tube. I watch her... I help her lug oxygen tanks... And, I don't want this to be my new normal. I'm sad. And, I'm angry. I'm mad at Cystic Fibrosis, because dammit, we always tried to make a friendly place for you here in our lives and this is what you have done with our hospitality.

And, to make matters worse, Sar told me that she feels like I'm ignoring her. She feels like I am so preoccupied with Dan that she doesn't even exist for me. So, I need to do a better job with that because Sarah is my joy. She is the one who makes me laugh, and challenges me to think outside the box and always be one step ahead.

My girls, all three of them, have been such a tremendous blessing to me. I try to focus on that. I chose this life. I could have chosen a different path seventeen years ago, but the world wouldn't be nearly as colorful and alive without Danielle and Sarah. Micah may not even be here if I had taken a different road. And, I do believe that however floundering and child-like, I have always tried my best to seek God's will. That being said, maybe God is having to man that road with his rod and staff to keep me on the path, so he can look over me and be with me.

The Jews are a lot more specific about that rod. They believe it to be made of sapphire. It weighs about 10 lbs. and bears a Hebrew inscription that translates: "To the extent of God let these come to pass." I don't really know what that means, but I have always loved sapphire. In fact, when Dave designed my engagement ring, he designed it with a diamond in the middle and a sapphire on either side to represent both of the girls. He was marrying all of us. And, the idea of "let these come to pass" does give me comfort. Passing seems like enough.

Tuesday, February 16, 2010

The Space Between Us

Earlier, I was having a text messaging conversation with a dear friend. She was sharing struggles with her preteen son, who has an illness that sometimes requires hospitalization. While our children have incredibly different diagnosis, both require various types of at-home care, and we struggle to do the best, and be the best for our children. However, there are moments when it all feels so enormously overwhelming.

I have read on multiple forums that CF parents are often overprotective and overinvolved. It's a challenge. You could add overtalkative, overopinionated, overanxious, overprayerful... I could probably qualify as any variety of adjectives with the prefix "over" in front. But, really... There isn't much choice. They send you home with this little bundle of perfection, and inform you that your precious little baby requires this specialized care in order to just keep living, and that even if you do everything EXACTLY right, your little fragile gift from God is likely to become sick anyway. It is the ultimate responsibility. And, there is no way to do it perfectly... In the striving to be the perfect CF parent, you can drive yourself crazy. Sometimes, despite medication compliance... Despite following all the rules, illness comes without rhyme or reason. When this happens, I find myself flipping through my mental Rolodex of every decision I have made on behalf of my children trying to determine if I had decided differently at one particular moment in time, would it have changed the outcome for this moment today?

But, guess what? After talking to my friend today, I realized CF parents don't corner the market on this life experience. Parenting is hard and there are no guarantees. I mean, I watched Intervention last night and wanted to slap the crap out of the girl on there, and grab her parents by the shoulders so I could shake them until their heads goggled around in circles.

Part of the transplant procedure requires a psychological evaluation and an assessment of Danielle's support network. Well, we have the support network down pat. I mean, if anything, we support. We hover. We downright suffocate. But, gulp... Psychological soundness? How can we fake that for any length of time? What's involved? Is there some type of sliding scale? Do they use norm referenced scales? Can I research and learn the correct answers to these questions? Are there penalties for being overly studious and neurotic?

I do know that while I in no way have a handle on mental and emotional stability, I am working on establishing some healthier boundaries with Dan and Sarah. Lots of times, when one of them is hospitalized, I say "we" are in the hospital. Well, the truth of it is "I" can walk out anytime I want without any repercussions, except perhaps the nagging parental guilt that plagues me. There is this mean little girl that lives in my head who says things like, "Great! You give her a defective gene and then have a hard time watching them stick her? You stay in there for this... You suffer through the boredom and the torture of a hospital stay right alongside. This is your cross to bear too." But, when I'm able to put the mean girl that lives in my head in time out for a while, a nice little girl comes calling to say, "God chose you to be their Mom. You are the supporter. You have to be in optimal condition to do the emotional support job. Be kind to you. Take care of you. As much as I know you would take CF in a heartbeat and have it for them, you can't. That's not your job in this life."

It's hard. But, as my mama always said, "Who promised you easy?" Nobody. Not today anyway...

Saturday, February 06, 2010

This is the Only Face I Have

"How are you?" This is the question everyone asks with compassion in their voices, sometimes tears in their eyes, and all the while deeply probing into my eyes with their own earnest kind-hearted ocular glands. And, it is sweet. And, I am so grateful. And, I am so humbled. And, it is killing me.

There's nothing to do about the question. It's there. It has to be there. And people aren't asking it just to make small talk. They really care. I don't really want people to stop asking... Well, kind of, I do. Because I don't know what answer to give.

I could give the psychological, academic answer: "Well, A-Hem, I believe I am coping extremely well given the strange series of trauma that has occurred all right in a row in my life. My limbs seem to still be attached, and I am walking around, appearing normal, but might possibly undergo a psychotic break any day now. Be on the look-out!"

Or, I could give the spiritual, airy-fairy answer: "I am great because I know that all is in Divine Order. This is a spiritual process called chemicalization in which lots of things go wrong at once in order for God to make smooth and perfect my way in the quickest earthly time possible. Did you know this world isn't really real, anyway? It is all just a grand design for the growth of my spirit! Isn't that fantastic?" Which, by the way, I really do agree with the spiritual, airy-fairy answer, but it would be hilarious to unleash that on people when they wander up and ask how I am.

However, I have chosen the more casual, walking-down-the-hall-in-passing answer, "I'm hanging in there!" And, I think it speaks to everything that is happening. It's a truthful answer. It tells I am putting one foot in front of the other, but reveals there is obviously "stuff" I am having to deal with. It's just that this answer isn't great when someone is holding both my hands and peering deeply into my oh-so-green irises in an attempt to read them like a crystal ball.

My friend, Amy, called me the other day just to check on me to make sure I'm O.K. There are certain people who get more than a "hanging in there"... Although, some days, that's all they get too, so don't feel left out. She said, "Hey. I was just called because I saw you and you looked... Well, I don't know. I just wanted to make sure you are O.K." And, I would like to say that this was just an example of my good friend noticing something that no one else can sense, but evidently, it's not. Cora approaches me all the time and says, "You O.K.? Let's have a hug." I walk down the hallway and people say, "Smile." (And, this has never been a smart thing to say to me... Even if I'm not in a bad mood, it puts me in a bad mood. Such audacity to think you need to have control over when and where I smile. Get a grip.) I guess the point is, I don't know what my face is doing, but this is the only one I've got. And, I imagine there are moments throughout the day when I can't make it do what I want. I want it to be a mask.... A mask that hides the stress, worry and pain of everything that is happening in life right now, but it can't. And, probably, if it did, people would really freak out anyway.

So, for future reference, I have a Conscious Discipline suggestion of how a casual conversation needs to go:

Person who cares and wants to let me know they are thinking of me and wishing me well: "How are you?"

Me: "Hanging in there."

Person: "Great! I'm thinking of you and wishing you well. You can handle this! You are doing it!"

Me: [insert smile here]