Wednesday, May 20, 2009

Catharsis

I try not to let resentment get the best of me. I try not to dwell on the negative aspects of things. I even try to live by the tried and true advice, "Don't sweat the small stuff." I'd like to think of myself as an eternal optimist, one that chooses to see the glass as half-full instead of half-empty. I even believe that everything, yes everything, happens for a reason (even if we don't yet fully understand what that reason is).

But then there are days, moments like the one I had today, where I felt my resentment-meter starting to rise to the point where I could barely contain myself and had an uncontrollable urge to reach across the table and smack someone. Of course, I would never do that to anyone; however, this rant is a result of a conversation I had today that I must get out of my system before I explode.

WARNING: If you're looking to read a post filled with my usual "eternal optimism," you've come to the wrong place today. :)

For two months, there has been a blurb in our sons' school bulletin each week that has asked for parental volunteers to organize the end-of-the-year carnival for the elementary school. Each week, I'd look at the little ad and tell myself that I couldn't possibly take on one more responsibility. People who know me well also know that saying 'no' is not one of my strong-suits when it comes to volunteering for things. After two months of seeing the ad, I finally convinced myself to call school and ask if they had any parental volunteers; afterall, the carnival would not be possible without them. As it turns out, there were already two volunteers signed up, but neither wanted to head the planning. Naturally, I was asked to fill that role and couldn't refuse (failure 826 in the "saying no" department). A "good mother" would do this for her kids and their school, right?

I realized shortly after trying to orchestrate the first meeting of volunteers, that it would get interesting...FAST. I had set the first planning meeting for today, Wednesday, at noon. Frankly, it's the only time I could get away from work, school, and my other responsibilities long enough to get together. As I was calling the other mothers, two of them complained that the meeting was at noon, stating that it was too hard to get away from HOME at lunchtime. Interestingly enough, they both said, "Oh, you work outside the home, don't you..." in as snooty of a voice as you could possibly imagine.

So today we had the first planning meeting with the now 5 volunteers besides myself. One mother, whom I'd never had the pleasure of meeting until today, stormed in late, complaining about how busy she was. Her little tirade went something like this:

"Oh my God. I have so much to do. I have been running all over this week pricing flowers, driving back and forth to the cottage to get it ready for this weekend, planning parties for our friends, having our pool cleaned, and trying to get our golf cart fixed. Oh, and when am I going to have time to golf in the midst of all this? I am just so busy. I just have to give up something in my busy schedule. I'm just going to have to give up mushroom hunting. I'm just far too busy to do that anymore. There are never enough hours in the day. I am so exhausted."

Gag me with an effin spoon, lady. Honestly, I wanted to reach across the table and choke her. How can people be so self-absorbed? I wish I had that kind of "busy-ness" to be pre-occupied with. Instead, my weeks are filled with constant worry dealing with Christian's illness and its effects on our family in addition to a myriad of other concerns with things like GERMS, balancing working 50 hours a week with taking classes on my master's degree, GERMS, taking Nick to allergy shots, Nick's baseball games two nights a week, Rob working late one night a week, household chores, GERMS, doctor appointments, blood draws, medicine shipments, homework (for both me and the boys), and carnival planning. Did I mention GERMS?

I know this is our life; the good, the bad, and the ugly. I accept it (somewhat). I know that everything happens for a reason. I get it. I really do. But what I don't get is how some people can walk around being so oblivious of the struggles that others face, not even stopping for one second to think about people like Rob and I who haven't had time alone in almost SIX years for anything more than a dinner together. She's worried about her cottage being all messy when her friends come over and we worry about having time to do laundry and go grocery shopping. She talked about how badly she needed to get away to the cottage for a break, while we will never get a break from the things we have to deal with. More importantly, Christian will never get a break. While she's complaining about how hard it is to go up to her cottage every week, we're having a difficult time keeping up with monthly trips to Royal Oak for our medicine so our son doesn't get sick and die. While she gets three vacations a month (and complains about how much work they are to get ready for), Rob and I can never take a vacation because we're terrified to leave Christian with someone else, have used all of our vacation time for Christian's treatments, and have to stock-up on vacation days just in case Christian gets sick in the future and he needs us. She's exhausted from doing all these fun things, and we're exhausted from not being able to sleep while we listen to see if Christian is breathing well on a baby monitor, scared that something might happen to him in the middle of the night.

She would never survive our life. Thankfully, she and most others will never have to know what it's like to go through what we live every day. But just because you don't walk in our shoes on a daily basis doesn't mean that it's ok to live in your fantasy world with blinders on, oblivious of the struggles that others face. I feel as though God only gives people as much as they can handle, and I'm flattered (and humored to tears at times) by the amount that He's plopped onto our over-flowing plate. Then again, I also realize that there are others in the this world (like the mom from today) who this would likely be far too much for.

When I processed my feelings about this incident last night, I began to realize that even though I was initially angry at this mom, I felt more sorry for her than anything else. There are times (many times, these days) when I think about how unfair this is for all of us. It's so easy to allow yourself to go down that path of "Why me? Why us?" I believe this is a normal part of the grieving process when it comes to living with a child with chronic illness and we do our best not to let this "stinkin' thinkin'" consume us.

We know we're not the only ones that face this type of adversity on a daily basis. We're certainly no stranger to the struggles that a child/family living with chronic illness has to deal with. However, I can say that over the past five (almost six years) of dealing with this, we have never felt more alone in all our lives.

While some families have been living it up in the summertime and enjoying the holidays together, we have practically lived in hospitals and have spent two holidays there. Until recently, we were petrified to go anywhere with lots of people (including to church) for fear that Christian would pick up an illness that would put him in the hospital. While many kids have the good fortune of only having to go to their pediatrician 1-2x a year and hardly ever get shots beyond the routine ones, we practically lived at our pediatrician's office and Christian has gotten more pokes than most will ever see in their entire lifetime. For years, we were told by doctor after doctor that we were overreacting with Christian. More times than I could count I was told the same speel over and over; "Your son goes to daycare. It's common for children in daycare to get 10-12 colds/respiratory infections a year. He'll grow out of it." "Just be patient," they told me, though my maternal instincts knew better. I could go on and on.

I read a blog written by a mother who has three small children, all who have Primary Immune Deficiencies. The mom, Dayna, summed it up PERFECTLY by saying:

"There was a time, not too many years ago when I felt terribly alone. In less than an 18 month period all three of my kids were diagnosed as missing part of their immune system and then started their IVIG infusions.I felt isolated, and lonely and I wondered why no one understood. I hurt in ways I can't even explain. I worried about my children's futures, I worried about what they would be able to accomplish, would they go the places they wanted to without worry? Would they travel on planes and explore the world as they pleased or would they spend most of their lives tied to a hospital?

When I thought about what I wanted for my children, I wished that my children would never have to feel as alone as I felt when they were first diagnosed and sick, I wished that we could live with so much less worry, that we could be like anyone else. I wished that we could get explore without needing to sanitize what we touched first."

In those two paragraphs, Dayna easily articulated what I have been feeling for YEARS. When I read them, I instantly felt not quite as alone. I've realized that maybe my calling in becoming a counselor transcends what I initially believed it to be. In my heart, I truly want to be able to help children and families who are struggling with chronic illness, helping them to know that they, too, are not alone. Even in the midst of some of my worst days dealing with all of this, I often think about ways that I can help make a difference in the lives of others going through this. Maybe this is the fundamental difference between me/us and the carnival mom. I feel as though we're blessed, sickness and all, because within the struggles we face, I believe that we are also presented opportunities to help others. And, in the long run, those opportunities will help us heal.