Confession: I'm ugly today. I'm having a bad day courtesy of JIA. Since Ashlyn got diagnosed in October, we have our good days and bad. But today is ugly and I can feel myself on a slippery slope towards a pity party hence it's time to write it out (more for my sake than yours because on days like today I need to see through the lens of faith and not my own cloudy with self pity).
As a mom, seeing your children suffer is a helpless feeling. We are "fixers" and want to kiss "boo-boo's" away from the time that they are placed in our arms in the delivery room. The last week has been rough around here. Her wrist is the size of a grapefruit and knees are so swollen she couldn't walk this morning. Last night she slept with me and literally cried in her sleep. Helpless. But this is our new normal. It's amazing that in a matter of months my active 13 year old daughter went from dancing around the house to using a walker to help her maintain mobility. Our new normal involves tough decision making as we "pick our poison" and choose which agrressive medication to try next. Our new normal consists of her asking "what was my SED rate this time" instead of "can I go to the mall with my friends". Our new normal means praying that it's the insurance company everytime the phone rings saying that they have approved the $4000 monthly treatment she needs right now. Today I hate our new normal!!
Over and over, we have tried to instill in Ashlyn that this disease will not DEFINE her (she won't be the girl with JIA or the girl with a walker) but REFINE her. And on pity party days like today I feel like a hypocrite. Even when I tempted to be ugly about this, I know that on the other side of heaven we will be amazed at all the good that came through this and the way God used this for his glory.
As someone who spent over a decade working with teens in youth ministry, I can honestly tell you that there are some world changers in our society's current youth. But I can also tell you that there are some morally bankrupt teens who have bought into our cultures me centered propaganda. When I see the character and perservance that shines through my sweet girl, I am thankful at times that God has allowed this JIA beast into our lives. Not that I have arrived at a place where I welcome suffering into lives with open arms, I think we are on a journey to "considering it pure joy" because through these difficult days God is faithful, faith/ trust/ and complete dependence on Him is built, and we are refined more and more into the image of his Son. Jake and I have committed to raising children that don't merely survive the world but change it. Surviving JIA is not our ultimate goal... But allowing God to use it to change us and change lives is.
"Consider it pure joy, my brothers and sisters, whenever you face trials of many kinds, because you know that the testing of your faith produces perseverance. Let perseverance finish its work so that you may be mature and complete, not lacking anything." (James 1:2-4 NIV)