Cleopatra is back

Last week was a whirlwind week.  I felt like the world was spinning as I realized,once again, that my boys actually have a bone marrow failure syndrome (low counts again!) and that the bone marrow biopsies scheduled in August are really necessary. Well, that and the fact that the doctor said no to a trial off of IgG. Cleopatra, Queen of Denial, is my middle name.  Perhaps it is God's grace.  I mean, if we really pondered the diseases and the possible outcomes on a daily basis, I am not sure any of us would cope very well!

Joseph fought his IgG infusion this week.  I hate the SCIG battles.  I hope our old hem/onc weighs in and lets us trial off for the summer.  For now, we continue IgG each week

I'm not sure I mentioned it, but a week ago this Sunday, a man was killed after Mass. He pulled out in front  of a fire truck.  Two of my boys were outside.  Kernersville Man Killed by Firetruck     OCD alert all week.  So far, I have survived.  One day, a fire truck was coming straight at us on a two lane road..... having it pass without any complications seems to have helped my youngest.  Now he says he will only be worries if he is driving.   This past Thursday, a friend of my oldest son was in a wreck that killed two people

 A very sad week and we are praying for all the families who lost loved ones.  I'm coping better this week than last (read: back to Cleopatra mode).  I made it to confession.... and my penance is the hardest penance I have ever been given.  I'm supposed to lock myself in the bathroom/room for 5 minutes of quiet each day this week.  Um... that isn't possible in this house until late in the evening!  What type of sin is it if you don't complete your penance?

My oldest is up between 6-7 and the others are up until 10 or later (asking questions, OCDing, etc). I do walk 3-4 miles a day, but that isn't really quiet-- neighbors talking at times and I like to listen to music. I try to find silence, but there is always banging, ringing, singing, arguing, music, etc going on.  I found silence two days in a row, and then my mind thinks too much!  It doesn't react well to the silence which allows random thoughts to fill my head.

I suspect that my house is like any other house with three noisy boys.  I'm working on my penance this week and I'll let you know how it goes. I need to go lock myself in the bathroom while they seem to be trying to fall asleep.  Maybe I can get to 4 minutes and 30 seconds! Ahh.. see, here it is 10:15 and one of the guys just came to ask me a question........  never alone for long!

It's All God

This morning, when Joseph told the reporter that Shwachman-Diamond Syndrome didn't affect his life, I was shocked. I know they have as normal a life as is possible with chronic illness, but I never expected him to say, "It doesn't," in response to the question, "How does Shwachman-Diamond Syndrome affect your life?" We've worked hard to ensure they have a "normal" childhood, so hearing him say this brought joy to my heart. It also brought tears my eyes.

I know it affects his life-- he tells me about it often. What was beautiful about this morning is that in that ONE instant, that ONE moment, the overall perception of his life came out in those words. It doesn't affect his life in the sense that he is able to enjoy all the normal activities of childhood. We adapt and overcome and find ways to make normal childhood activities possible.

I've been thinking about it a lot today. Friends who have heard the boys say this sort of thing always say, "Oh, it is because you and Chris are such great parents," or something a lot like that. I have to remind people that it is ALL God. Not me, not Chris, but God. If you stepped into our chaotic lives for a moment, you'd see that it really is God who does all of these things. Sure, Chris and I play a part, but God takes over and makes up for what we are lacking.

A Matter of Perspective

 I just wrote a new article :  A Matter of Perspective

I've already gotten some great feedback!