New Way Of Life

My life has felt like a roller coaster these past few days. My son Julian is doing well. He's busy with sports, video games and friends and appears to spend very little time thinking of being sick. Me on the other hand, spend most of my time thinking of it, holding back tears and pushing away the vivid memories of his worst moments.

I am trying really hard to find a new way of living my life with the acceptance that my son is healthy and happy right now, today...and I can't control what happens tomorrow. Trusting God has always been a really difficult thing for me. I have no doubt in my heart and mind that it was solely through the grace of God that my son lived through his crisis.

I can't help but feel that this is some type of dirty little trick to keep me on my knees and in submission to God. In life, most of us take back control of our lives from God when things are going well. When things are not going well, we gladly give it up to God to fix and make everything OK again. For so many years I have lived keeping God at arms length, loving him, believing in him but just not being able to give him control. Now, my son is in a place that I have no control to change. Talk about submission. I'm either going to grow in my faith and have peace or I am going to die prematurely from the stress of it.

I think that I have said this one too many time and have probably wrote it in my blog already....I would rather get hit by a truck a thousand times than lose my son or see him get that sick again. It feels really unfair that it happened to him and not me. He's the straight A student, gifted athlete with an infectious smile. I've made enough mistakes to last the rest of my life and a few other lives too.

Julian is now done with his protocol treatment for HLH and is in remission. So, for the rest of his life we have to just be aware of any warning signs that the disease won't strike him again. This week he developed fluid in his knees and minor swelling. He complained of knee pain but it didn't slow him down with basketball.

Monday he returns to the hospital for more tests because of that swelling. We are trying to always be one step ahead. HLH causes multi-system inflammation in the body. Another thought was that Julian could possibly have Juvenile Rheumatoid Arthritis. JRA is linked to HLH. Julian had swelling in his joints with a rash at the onset of HLH. However, becasuse he had no problems creep up when the steroids were removed, the thought was that it was more probable that it wasn't JRA. Now, we scratch our heads at what is happening and I wonder what this means for him.

He is terrified of having a crippling disease and he doesn't understand what a bone marrow transplant means. More things to pray about.