Eyes

We took Keyan for her checkup in Cincinnati last week and I have spent several days attempting to process my feelings about the trip.  It is always hard to put my thoughts into words after we leave this  place that plays such a huge roll in our lives. It all hit me as we were making our way through the busy main hallway of the hospital to leave.  My thoughts instantly consumed me, stopping me in my tracks and tears formed.  I realized at that moment the defining thing about the appointments were people's eyes.  As I let the tears fall, grabbing tissues from the germ display on the wall, it hit me that the doctors and nurses eyes were different this time.  

William Henry is quoted as saying, "The eyes shout what the lips fear to say."  I realize now that that is exactly what happened in that examine room and why I felt like I had been kicked in the stomach during that appointment.  Every question they asked, they just nodded their heads to our answers.  Almost two years into an official diagnosis, and almost ten years into Keyan living with this disease, the doctors can only nod, agree, and say, "that is what we would expect."  Every single thing they asked, they already knew the answer.  Every single thing they suggested, we have already implemented.  The look in their eyes was one of sympathy, one that spoke much louder than any words they used.  That my friends, is hard to see.  I am very used to sympathetic looks and comments and they don't even bother me.  I understand completely why the general public, and even our family and friends look at us with that, "I am so sorry" look.  But when the top GI doctors looked at me in that way, it hit me to my core.  

Many of you have asked us over the last 6 months how Keyan is and many more of you have heard me say that she is good, but that it is taking so much more to keep her at that point.  Managing her care every day blows my away.  It is a constant cycle of trial and error, treating symptoms, dealing with the loudest problem while the others hang heavily in the background, and guessing at what the best thing is.  It is a life with many more questions than answers but the beautiful thing is that Keyan has no idea the level of complexity.  For that, I am immensely grateful.  While I struggle to make sense of it all, she continues to live this life with incredible amounts of joy.  She continues to smile, laugh, dance in her undies, and embrace every day as if it were a gift. My conclusion therefore is that while the worries make me weary, my job as Keyan's mom is to follow her lead emotionally and continue the fight....continue the craziness....continue the juggling act...all with a heart full of gratitude.  Thankful for another day to fight for her, thankful that we are able to keep her managed so well, and thankful for the way she touches my heart every single day.  The bottom line???? We just keep keeping' on!  The doctors may not have a lot of answers or suggestions, but we will just keep doing what we are doing because today she is full of life!