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Different Perspectives

A few weeks ago the nurse office manager of our CF clinics called and asked me to be on a board of members of our pediatric and adult CF care team.  This team is in charge of making up new regulations and essentially working at making our clinic the best it can be.  When they called to ask me to be on the board they basically said that they asked me because, I keep them on their toes!  In another part of the conversation she said, they could have asked anyone, but they wanted me because I do a lot of research and reading.  I am also not afraid to tell them what I think and because I am “pleasant pain in their rears” they wanted my input =0.  I almost took it as a compliment.=0  But it really did make me chuckle.  I guess I don’t mind that title.  I am fighting for my child’s life and I will work at it with all of my heart, mind, soul and the talent that God gives to me to use!

Anyway I have now attended two meetings.  The team is great.  They all have a passion for CF and a will to make our lives better.  It has been funny though to see the other side of spectrum, and how their decisions affect us for good or for bad.  I greatly appreciate that they are interested in what families think (it takes a lot to allow a parent representative to be part of their tight nit group).  However, it is a good reminder when I hear them talk, that as much as they care for their patience…they will never understand CF.  They write orders, and prescribe treatments, but I can bet that none of them have ever once had to walk a day in our shoes.  It is wild to think about the different perspectives. This last week we discussed the differences between the pediatric side (where there are parents that usually act as a strong advocate) and the adult team where the patients are just trying to live life with as little interference from CF as possible.

When I stop to think about the different perspectives,it truly is an amazing difference.  The doctors have gone to school for years, have a lot of head knowledge, but no day to day, sickness to sickness experience.  They may have watched many patients struggle, but it is from quite a different perspective as a doctor or caregiver.  They often go home to healthy  families, although this CF care team seem like this is more than a job, it really is still just a job.  As a parent, I will never know what it is like to struggle to breath or to feel the ravages of CF on MY body.  The constant breaking of the will in doing treatments, and getting used to medication that often times are more than a person should ever be asked to do.  CF people are amazing, strong, and determined people!  However, it is equally true, as a parent my heart is ripped to pieces to watch my child struggle and know that there is nothing that I can physically do that will make this disease go away!  It is something I think about day and night.  Not a day goes by that I don’t pray for healing!   I hear every cough within 50 yards, I am constantly, and quietly on the watch for dangerous health situations that may need to be avoided.  As a parent, God has entrusted me to protect, guard, guide and do what is best for my children.  All of these roles are very different in the care of CF and it is vitally important to recognize how different these groups are, and yet how hard we must really work together.

My prayer is that through this opportunity that I might first and foremost shine the light of Jesus to all that I interact with each meeting.  Second, that I may gain a better understanding of the perspective of the doctors and be able to help them relate to life from the other side.  I don’t know how well I will do in this position, and there are parts of this interaction that are already difficult to hear (the talk about morbidity rate is common, as well as ALL OF THE ISSUES that we have to look forward to=( in the future ).  However, for now, I will take it meeting by meeting and pray that I can be used by God in some way whether big or small.

 

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