Wednesday, August 26, 2009

Why Us?

I am over the moon this morning. Last night I was feeling a lot of despair and frustration after going through a day of Robby not being able to walk. I was having trouble sleeping last night and felt like all of my coping mechanisms were broken. I finally remembered to do what I should have done in the first place--pray! I prayed for a little bit of something. One positive thing to help us get through this. That's all I needed. Well, this morning Robby was able to walk again. It's stiff and very wobbly and I can tell it hurts, but he's doing it. He was so excited! He wobbled across the living room to his toy box and he smiled at me and said, "Look, I'm doing it by myself!" Words can't explain the joy that came from those dozen or so stiff legged steps. I am so grateful. I explained to him that he has to keep trying really hard to walk even though it hurts because it will help his legs feel better. He seemed to understand and he told me, "OK, mommy. I try really hard." What a sweet boy.

On the drive to work this morning, I was thinking a lot about how things were early on and I have something I want to share. My hope is that it will help someone who is going through this. When we initially got the diagnosis, I was overcome with relief. There were moments where I feared we were dealing with something worse than JRA--something potentially terminal like leukemia. It was a huge relief to finally have a name for his illness and to learn it was "only arthritis." As the reality of living with JRA set in, and I learned more about what the long term picture might look like, relief gave way to a mixture of anger and grief. I had to mourn my previously healthy son. I had to consider the possibility that he might never be able to do certain things and that he might be in some amount of pain every day for the rest of his life. I had to accept that our new life was one of doctor's visits, blood draws, and constant vigilance. I can still remember the day Dr. H. handed me a pamphlet from the state's Bureau for Children with Medical Handicaps. My initial reaction was, "This isn't my kid!" Later that night I read through the materials and I realized this was my reality. This was my kid now. That was the first time I can remember thinking, "Why is this happening to us?"

I was angry and I wanted some explanation for why this should happen to my easy going sweet boy. Why should this happen to our family? The first phase of an answer was, "Why not us?" I came to realize that nobody deserves these things, but they happen. We aren't special or somehow immune against disaster. I finally embraced the idea that God doesn't promise life will be easy and bad things will never happen, only that we won't be alone when we go through the hard times. This got me through for a little while, but at some point it wasn't enough.

The real breakthrough came for me when I realized this was happening because I can handle it. I have overcome some really deep dark pits of adversity in my life and am as strong as they come. I also have the resources to provide the care that is needed (financial, insurance, generous leave benefits from my job, etc.). I have the ability to research and learn about my son's condition so that I can better help him. I also am a fighter and know I will be able to stand in the gap and be an advocate for my son whenever it might be needed.

I even found myself, for the first time ever, thanking God and praising Him for my experiences dealing with my own illness. For two years I've struggled with ulcerative colitis. It's pretty well under control for the time being, but I feel I have an understanding of pain, and the cyclical and unpredictable nature of chronic illness, that a lot of people who have never dealt with it first hand can't have. I know what it takes to keep living your daily life inspite of pain and disease. I know the determination that is required. I also know the courage it takes to even try. That is why I consider one of my greatest responsibilities to be teaching Robby how to live with this disease and still have as full a life as possible. I have to give him the confidence to try as hard as he can despite the pain. The doctors can give him the treatment and drugs--but it is up to me to give him the guts to deal with all of this. In the moments where my head is on straight and I can see these things clearly, I realize what an honor and privilege it is to be entrusted with this little boy who needs so much. I try to cling to this when I am in the dark moments. It's not always easy, but the light does come eventually.

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