Sheila Sims Iding (Timothy and Joey’s mom)
Today I will travel the same road I have traveled all too often for several years. I will take the same highways, the same exits and the same side roads to get to the destination I have gone to several times a year for over 20 years. Today I will go to Cystic Fibrosis Clinic at the University of Michigan for Tim’s CF check up before he moves to China. The travel of this familiar path is not like other familiar trips where you haphazardly travel along, sing some songs, have some talk and arrive, spend time and depart. No, this particular trip is one of reflection. Reflection on the way there…reflection the several hours you are at clinic…and more reflection on the way home. Reflections on reflecting….
On-the-way-there reflections:
On-the-way-there reflections are usually more interactive than the other parts of reflection this day. From the time Joey and Tim were little the trip to CF clinic was always filled with talk, song, wondering what the day would bring, (and a new coloring book when they were little). Sometimes the talk was about new concerns or awareness of treatment and sometimes they were filled with concern about a cough that lingered or an infection not quite cleared. We wondered about breathing tests and chest x-rays and the examination that would chart the battle of this disease. We also talked and laughed about family, friends and life. We were captive to each other in that car and we made the best use of the on-the-way there time.
Clinic reflections:
Clinic reflections are the most sobering of the day as you check in and sit and wait. From the very beginning at check in you see the letters CF after your child’s name. We are so fortunate…so fortunate…that most days we don’t even have to think too much about CF (aside from all the medication and treatments). Most days we can almost forget they have it. But CF Clinic is a snap back to reality as every paper, every test requisition, every prescription and insurance form has the letters CF by their name.
As you sit in the waiting room…and sit in the waiting room…and sit in the waiting room (you get the idea), more and more CF people filter in and then you get the biggest reality check of all. You get the fortunate part. Some of them look to be as fortunate as you but some of them come weak, frail and with oxygen. You realize then that the CF behind their name has a different more powerful meaning. And the slap of reality to your face seems to sting less than it does for that mother sitting across the room…waiting and waiting and waiting. You are waiting for an appointment. You can tell they are waiting for much more.
Before you even get to the exam room they have already begun to fill out the chart that will tell you how your battle of CF is progressing to stop the disease progressing. Before you even get to the exam room they call you back for PFT’s (pulmonary function tests) and height and weight check. The PFT’s tell you how your lungs are working and the weight check is an indicator of how all those enzyme pills are working. Weight loss to a CF person is a huge indicator that something is not right. The scale has never been my friend but to a CF person it can be a brutal enemy in a brutally different “weigh”. So before you even get to an exam room you already know your PFT scores and weight. You already have important scores for that “ME vs. CF” score sheet.
For some reason the exam rooms used to provide the most entertainment as you wait. It’s more fun with two kids (no matter their age) because they seem to play off of one another. Maybe it is the nerves of waiting for a doctor, maybe it is the early awakening that morning, maybe it’s containment in that tiny room, maybe it is the giddy-ness that sets in with all that waiting. But I will admit that Joey, Tim and I have had some amazingly fun giggles in those exam rooms and I will admit now that we have opened drawers we shouldn’t have and played with instruments that probably weren’t meant for us to touch, let alone play with. Some CF Clinic days it’s been the best medicine.
The exam room then becomes a parade of a team of people helping you fight this disease. The resident, the student intern, the social worker, the nutritionist, the doctor…finally the doctor. As you wait with bated breath as they check the breath of your children. That stethoscope to their chest has a different meaning than it does at the pediatrician for a check up or the urgent care place for a fever. That stethoscope to their chest from a CF doctor is the biggest score on the “ME vs. CF” score sheet. You watch the doctor’s face and you cringe when he seems to go back to that one spot over and over. You almost seem to do the breathing in and out with your child. You almost seem to do the praying with each breathing direction given by the doctor. There is much more to the exam but this part is always crucial and…for us…this part has always been good. I will never take that for granted…this part has always been good. There have been a few crackles, a few questioned sounds, a few signs of congestion not cleared from an infection but for the most part the biggest score of the score sheet has always gone in our favor. Big score. Answered prayers.
The last Clinic reflections come from all the testing. The lab work and the chest x-rays where you take your requisition slip and you go sit in another part of the hospital and wait and wait and wait. When you are done with all this extra testing, you are free to go, free to try and remember where you parked, free to fight the traffic to the highway and free to move on to the on-the-way-home reflections.
On the way home reflections:
On-the-way-home reflections are the most powerful for me because usually they are my own. We talk about clinic a bit. We talk about what changes have been made in their care, if any. And we talk about the reflections of the day. We call home and report usually good news and we reflect on blessings. This is usually the time I thank them for being so healthy and fighting so hard to be that way. We thank God for another “healthy” check up. I get a bit sentimental (who me???) and a bit weepy as we talk about how CF really stands for continuous fighter. And then they do what they have done since they were little kids…they fall asleep. And the rest of the on-the-way-home reflection is me alone with my thoughts as I drive this road well traveled, as I thank God and as I peek in the rear view mirror at continuous fighters asleep and blessed with good health. I reflect on the busy-ness and the waiting-ness of the day. I reflect on the mom and the CF patient who didn’t get good news that day. I reflect on the miracle of doctors and medicine and St. Raphael, the patron saint of both. . I reflect on the journey of the day and the journey of fighting this disease.
Today I am at CF Clinic with Tim like I have been so many times before. I don’t go in with him anymore. He doesn’t need me here. He doesn’t need me in the exam room. He doesn’t need me in the labs. Joey has gone to CF clinic alone in NYC for years now. But as I sit here in the waiting room I reflect on the honor of being part of their continuous fighter journey, I reflect on their fight and their winning score sheets and, mostly, I reflect on how blessed they are to be the greatest enemy CF has ever known. It's been a road well traveled for sure.