CSS and Kids, aka Karen
Suzanne DePaolis
July 2008

I am a wife, a mother and a Churg Strauss patient. Sometimes I wonder which job is the hardest. I already know which job I would happily give up but unfortunately I do not get to pick and choose; at this point it is a package deal.

My kids are ages 10, 13 and 15. Often I am asked, “How are the kids doing?”. I think many of the mothers and fathers out there get similar questions. Our first instinct is to answer, “Fine…”. We really don’t want to go into how they are Actually doing. Some things we do not want to share. Shall I tell them how 1 year into the illness I had 2 children with breakdowns and one is on anti-depressants now? Shall I share the experience of having a child tell another adult that the ONLY reason worth living was for her horse (ok it is a beautiful horse but….). Do they want to hear about my ten year old lying down in the middle of his classroom floor and yelling out, “I want to Die! Everyone dies… what’s the point of living?” as the teacher escorted the rest of the students out of the room and called me. (yes he is home-schooled now…). Or would they rather hear about my gifted 15 year old who just stopped doing all homework for weeks and then couldn’t stop crying for days? Instead I answer. “Fine” and carry on my business.

Even through these hard times on the kids I think CSS has taught them a lot. They have become stronger and more independent because of my illness. My kids were not spoiled prior to CSS they were loved! Deeply loved! Let’s buy the latest video game loved. They are still deeply loved but now they understand that the world no longer revolves around them. They realize that on mom’s ‘bad’ days, trips to the Mall are out. They have found out that the dish fairy no longer shows up at night and loading a dishwasher is part of everyday life. They have also learned how to wash and dry laundry; although folding it is still a mystery and the 5 load pile in the living room is now a constant. My middle child has learned how to cook and I am not just talking about the easy stuff. She can deglaze a pan and make wonderful salad dressing too. They cook and bring me diner when I am really in bad shape and they give me cuddles when I need it. My youngest is a walking medical textbook about CSS and vasculitis and he is on a mission to make sure people understand what I have (much to my embarrassment at times). The first thing your kids will do with your illness is go and Google it… best to send them the web sites so you know what information they are getting. They have learned to rely on each other for bedtime stories, minor first aid, and maximum comfort. They have become closer to one another; a bond I hope will last the test of time.

So, when I answer the question of how my kids are doing with “Fine” I am answering correctly. We are having our ups and downs with this ‘syndrome’ and adjustment take time. For everything that CSS has taken from my kids it has also given to them many positive things that will build their characters and help them throughout their lives. So if you run into me and ask me again how my kids are doing I may not answer, “fine”… I might just answer “fantastic!”