In the very early days (back in 1999), I came across the following verses from the Bible, and at the time--in that moment--it seemed like a direct message just to me (from 2 Corinthians 1, from the New Living Translation):
When I read that in 1999, I was definitely feeling mired in our "troubles," (the shock of having a child diagnosed with a chronic disease that will not be fixed with ten days of medication) and these verses were (and still are) a huge comfort to me. We've grown and matured since then, and while the road is not always easy, Jesus gives us strength and peace when we have none to offer in and of ourselves. He holds us up when we feel rather weak. We have always prayed that in all that we go through, in everything we do, that we will see who God is. And we have. Our prayer has also been that others will be able to know the love and presence and comfort of God through our circumstances, as well.
I am humbled when our experiences have been able to help other moms (and dads, too!). There are newly diagnosed JA children all the time, and parents who at first are in shock, who feel alone, who are overwhelmed by trying to understand this diagnosis and its implications, who are wondering what the future holds for their child. They get a lot of information from great pediatric rheumatologists and their nurses, but sometimes they just need to hear stories from other parents who have been where they are. We can help with basic information, comfort, encouragement, and hope that the future does not need to be bleak. We have groups on Facebook, where information and encouragement and support is shared. There are family-oriented conferences and activities offered by the Arthritis Foundation and some other groups.
A book that doesn't speak to rheumatic diseases, but to discussing why God doesn't always choose to immediately fix all of our problems and troubles is by Laura Story: "When God Doesn't Fix It." This book just came out a few weeks ago, and I ordered it and read it last weekend. As I was reading, in my head, I kept saying, "Yes! Yes! and Amen!" So much truth and love in this book. It is one of those books where you want to quote a multitude of her sentences to your friends and family! So much so that I am just recommending that everyone read the book for themselves. Laura Story is a singer/songwriter, and I also recommend her music---so much of what she has learned and heard from God is written into her songs, and this love and truth just sinks into my soul as I listen (usually when I'm working in my kitchen---that's when I usually put music on.)
To all JA parents and families---let's continue on this journey with hope, with a sense of calling, with the truth of God's love and comfort throughout the entire road, but especially in the rough patches along the way. We can have a good cry every now and then (sometimes I just need some "moments" or "a day" to deal with some of the rough detours before I'm ready to get up and move forward), but we have something to offer to each other: encouragement, advice, support.
Oh---and an update on Anna! She's beginning to regain some feeling in her lips and gums and face, although she still has some areas that are numb. (This is to be expected.) She still needs to be careful with what she eats---still can't bite into a lot of things. She was hungry for a good hamburger today, but ordered a hamburger steak, since she knew she would have to cut it up in little pieces and eat it with a fork. Anna just had a Remicade infusion a few days ago, and they took blood work, and this time, her doctor asked for some more specific numbers to check on her iron levels. Although her hemoglobin, hematocrit, and red blood cell count were all just a little low, they were not far from the normal range. That is good news, since there have been some days when she has seemed rather pale and tired. We'll continue with the iron supplements for now.