My internal struggle

     This past weekend I had the amazing opportunity to attend the first ever Castleman's disease patient and loved on summit.  This event allowed patients and their families who were diagnosed with Castlemans disease to connect with the leading doctors and researchers in this disease and also with other people sharing the same battle.  It was such an amazing experience being able to meet some wonderful families and feel as if we are not alone in this.  I headed there with this sense of triumph and power thinking that I would get great answers and come home able to fix our sweet girl.  Though I did make some amazing connections and learned a great deal, I came home feeling defeated.  Though we met a great deal of people who are battling this disease, some really in the fight of their life right now, we still have not come across a single case as young as Katies.  There is literally no literature or research out there that we can compare Katie's case to.  No one knows what Katie's future will hold.  There are a lot of statistics out there for young adults, adults, and a few adolescent cases, but all the questions we have are continually met with a "we do not have those answers yet".  Katie's case is unique because though she has the milder form, the location of her disease is not able to be removed surgically so that pushes her into the treatment category.  With so many unknown out there a lot of her doctors want to just wait and see what happens, but new research is showing that that is not always the best idea, and that even in these milder cases, it is a life long disease and one that can come back at any time.
     This is where my struggle comes in.....As a mom I want to shelter my children from any pain, illness, heartache or struggle they will ever have.  I thought it was my job, my duty to protect my kids at all costs.  I can not protect Katie from the battle she has ahead of her.  I can not just take away the stomach cramps, joint pain, sleepless nights, anxiety, bloodwork, scans, or procedures.  I can hold her hand and tell her I love her, but this fight is hers.  I want to fight this for her and take her pain and the life long struggle she will have, but I can not.  I struggle daily with heartache knowing that she literally will fight this her whole life.  I force the why is this happening questions out of my head because I know they will not get me anywhere, but I have found myself searching for that answer anyway.  I know one day we will have to sit down and talk to Katie about all that she has going on, but I dread that day because how do you tell your child that she is sick..that though she is ok today, she has a very high chance of getting lymphoma later in her life, that though she feels good today she could be fighting for her life tomorrow?  I wish I could trade places with her.  All I want for christmas is to be able to give her the gift of freedom to have a normal childhood and a normal life.  Gods plan is hard to understand sometimes, but I do know that he has a plan and I find comfort in trusting his plan every time I see her smile......