A recurring theme in my life is about learning to let go. Letting go of outcomes... Admitting powerlessness... Being presented with evidence that things I absolutely knew were true, aren't necessarily so. Maybe that is why spiritual truth is so pertinent in my life... I'm seeking. Always seeking...
Life is full of paradoxes. For the past three years, I have beat the inclusion drum... I have advocated for students with disabilities to be included in the regular education setting. I have pounded concepts of Least Restrictive Environment, accommodating students in the regular classroom and making appropriate modifications so that all students might be included and successful in the general education setting. However, this year, I'm teaching in a resource classroom. Just when I KNEW absolutely what was RIGHT about inclusionary education, God presented me with students who needed a more exclusionary setting to be successful.
I have further always resisted any notion that my children might need "more restrictive" medical procedures. We do constant "bronchial hygiene" at home. We take medications as the need arises. We are pleasantly invited to take a vacation at the "Spa", as Dr. Sindel likes to call it... This is where the girls are now. They were hospitalized this past Monday. We do all of these things. I stay with the girls and have always tried to balance what is best for them physically with what is best for them emotionally, spiritually and mentally. Doctors look at their physical health, but sometimes forget the fact that they are people. Because of this, we haven't allowed the placement of a port-a-cath in either of the girls. A port-a-cath is a permanent line placed in the chest, (or I have recently discovered other interesting body locations), to make administering I.V. medications easier. The port is inserted under the skin, with a line running directly into a main vein to the heart. It looks simply like a thin bottle cap has been inserted under the skin. Doctors have been trying to get me to agree to this procedure since the girls were young. I wanted the girls to have days, weeks, months and years where they weren't dealing with an extra thing in their chest... If it isn't being used for I.V. administration, it has to be flushed once a month. One more reminder... "Oh yeah, I have cystic fibrosis." For those unfamiliar with the concept of puberty, girls begin developing breasts during this time. This has also been a consideration for not having a port placed until the girls were older.
The benefits of a port, however, are numerous. And, every time I sit with my girls while they are running mid line catheters up their arms, I am reminded of why the doctors think it would be best. This time, the PICC nurse, (a really wonderful nurse named Ingrid), stuck Dan twice, but the guide wire wouldn't go through. You see, after someone has had numerous I.V.s and lines run, the veins begin to branch off. We had to quit and go back the next day to try again. Danielle cried when the wire couldn't go through. The tears just welled up in her eyes until they spilled over her cheeks. And, I swear to you, a part of my soul is ripped out every time I sit and hold her hand and watch.
Sarah also had to have a mid-line run. She cried too, but they were able to get the line in. As I was rubbing her hair, soothing her with words of: "It's O.K., Honey... It is going to be O.K. Just a few minutes more..." Sarah cries, "But, Mama, it's really not O.K." And, again, I'm left just trying to pick my heart up off the floor, lest it get stepped on by a well-meaning nurse.
I always feel so absolutely inadequate when faced with the medical decisions. However, the overall ideal that I have tried to follow is a simple one: We live with cystic fibrosis, not for it. The girls can be and do whatever they want in spite of the fact that they have this disease. God is all powerful and we are relying on the miracle. Still, it's more of a philosophy than anything that is able to give me absolute guidance in times of need... How am I to know when the time is right to allow the placement of a port? Honestly, part of holding off has been that the girls get to make their own decision about it. Having a port would mean less painful sticking...
Now, Dan is older... And, she decided she wants one. We went ahead and scheduled the surgery for Monday. And, after spending some time in prayer I really heard the words: "Trust the process." I say it to my students all the time. Amazing how my own words come back to me. However, after we went back the second day, Ingrid, was able to get the mid line placed. It was smooth sailing the second day with no tears. My heart remained in my chest. So, we decided to cancel the port placement until the beginning of Dan's next hospitalization. That will give her a few more months, maybe even a year or two, to live without a bottle cap under her skin. And, Dr. Sindel assures me that when the inhaled powder medications become mainstream and the genetic cure is available, we can remove the port. So, I'm trusting the process...
I often wonder why God chose me for this job of CF Mom Extraordinaire. I'm humbled, and I'm not worthy. I whine to my friends when things get hairy. But, in moments of reflection like this, I know that I am the luckiest mom in the world. I know that I have been drawn into a closer relationship with God, an absolute reliance on seeking spiritual truth, because of being Dan and Sarah's mom. It is my most important job. I'm grateful that God wanted me. What an honor!
And, somehow, my friends and family have provided the support to make trusting the process a little easier. Friends have been visiting. Randy, the girls' dad, and Dave are currently trading off stints at the hospital. Somehow I was fortunate enough to marry two really great guys in one lifetime. Kristine, Randy's best wife, calls every day to check on the girls. Maxine and Wayne, Grammy and Grampy, (Randy's parents), are staying a night too. My parents are also up at the hospital constantly. Aunt Micki has supplied plenty of junk food, and calls daily to check, as well. So, honestly, what am I complaining about? The answers aren't easy, but we all muddle through together.
So just for today, I haven't freaked out, checked myself out of rehab, shaved my head, gotten a tattoo, beaten up a papparazzi with an umbrella and checked myself back into rehab. It could be worse... I've just managed to sit in the heartache of sometimes feeling helpless and not knowing what to do. That's life.
I'm left feeling grateful. The lessons come for me when I am open to receive them... I'm thankful that I don't always know the right answers... I'm thankful for the process...
