It's easy to be really spiritual when I don't have to be around other people. The girls have returned home after ten days of being on vacation. When they were gone, while reading "There is a Spiritual Solution to Every Problem", I had conjured up all these ideas about how positive my parenting practices would be... How our home would be one of peace, love, and sunshine... How each day in our home would be a harmonious expression of God's love in action. I'm sure that it IS all those things, but it doesn't look like I envisioned. Don't get me wrong, we are glad to be back together. I missed them both terribly, but I am so glad that they got to go and have great fun on their respective trips. In their absence, I thought about how we could have more peace in our home. What most people don't know about our day to day family life is that every day is a repitition of medical treatments and medications. The girls get up in the morning and do therapy vest , breathing treatments, and take handfuls of pills. As a mom, I don't know any other way. Both my children were diagnosed with cystic fibrosis before birth, so this has been the way we have done things. For the girls, it is old. They resist. I insist. There is conflict.
I don't understand why they dawdle. Each girl will come up with every excuse in the world to postpone getting in the vest and doing the treatment. "It's Sarah's turn first... It's Dan's turn first..." (Part of this is the insurance company's responsibilty since they are currently denying paying for a second vest. They are treating the girls as if they are one entity and that is wholly unfair. It will change this year and be approved. More to come on that later.) Then, I hear, "Can I eat first?" During the school year, we have a rigorous routine, but in the summer, things are more lax. I let them sleep in from time to time. I'm not a complete treatment Nazi. But, make no mistake. There must always be a repitition of dialogue. "Have you started yet?" "I'm getting it!" Ten minutes later... "I don't hear it!" "I'm getting it!" "What number are you on?" The vest goes off after 10 minutes... The idea is that the vest user is supposed to take off the vest after 10 minutes, go cough and spit, and get back in the vest to do two other ten minute sessions. Needless to say, we don't do this. Once I get the little cherubs in the vest, they certainly aren't coming out of the thing. If they need to cough and spit during the process, I make a trash can available for their spitting pleasure. Otherwise, they can just do it after the 3rd session is complete.
The thing I try to remind myself of is that I don't have cystic fibrosis. I don't know how it feels to have to do the same series of treatments every day. I try to be compassionate. Still, it is frustrating for me. Even during times when they are having trouble breathing, they resist doing treatments, which will utimately make them feel better. I don't get the resistance. When I am especially frustrated, I think, "These children will have to live with me for the rest of their natural born lives or they won't ever get their treatments."
A behaviorist would say: Stop arguing with them. Allow them the natural consequence of their own behavior, or lack thereof, in this case. The natural consequence, however, in this case, is far too punitive in my mind. I want health and life abundant for my girls. Unfortunately, my wants are not theirs. They are children, and they are not able to see how their immediate action or inaction affects the big picture of their lives. I guess it doesn't necessarily have to do with the fact that they are children. Many adults opt for instant gratification over what is ultimately best for them.
So, what to do? What to do? I'm tired of the struggle. But, we are stuck, as a family. I asked for Dan to pray for the willingness to be willing. She is usually willing to go along on the spirtual journey with me to see where it will lead. Sarah generally gets dragged along on the spiritual journey, but she is usually willing toward the end.
Yesterday, we went to Pulmonary Associates to see Dr. Tony Cowan. He is a researcher. The girls were asked to participate in a study for a new method of administering TOBI. Initially, Sarah was resistant to participating because the study requires blood levels to be taken. However, after talking to her and explaining that if other patients before her hadn't agreed to studies like this, we wouldn't have the medications that we have now that help them live healthy lives, she agreed. Interestingly, though, after all the discussion necessary and the tears that preceded the discussion, Sarah did not qualify for the the study because her pulmonary function tests were too good. Dan qualified for the study. But, in looking at the data, Dr. Sindel saw that her functions have fallen during her trip to Italy. She was very healthy before she left, but being without the vest never works well for Dan. She did Acapella, but it is never as effective as the vest. She also coughed up a little blood yesterday, but it seemed to be a one time thing. Dr. Sindel left and instructed me to bring her in Monday, the 12th if she isn't better, and Monday, the 19th if she is better. This weekend will be a healing weekend to allow consistent therapy to restore her health. If she isn't better, she may need I.V. antibiotics, which would disqualify her from the TOBI study for a while.
At any rate, here I sit with all of this and spiritual questions... I have been reading about energy vibrations, prayer and meditation. I have been submersed in daily meditation practice. Becoming one with the One, if you will. All of this in absence of the girls. And, here I sit, still trying to figure it out. The truth is, it can't be figured out. It is up to God. All of it is up to God and that should be good enough for me. What is my role? How can I bring peace to my own family? It is easy to give fried chicken to strangers. It is difficult to bring peace to my own family members who don't necessarily do what I think they should, when I think they should. My family doesn't always cooperate with me with my talk of speaking it to the Universe and visualizing healing light flowing to every cell in the body, and my strangeness and my yoga practices. They want to do it their own way. And, surely, that is O.K. too.
~Namaste'~ Christy
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