Thursday, March 15, 2012
It was a hard lesson to learn. I no longer had the freedom to plan my life around the predictable baby issues - runny noses, sleepless nights, ear infections. Everything became magnified. Even when I had the opportunity to use my knack for organization in keeping track of doctors appointments, medicine dosages and therapy logistics there were always moments that would knock me down. "Didn't see that coming", I'd think when a new medical issue arose or our finances were hanging on by a thread after an insurance denial.
For a good year and a half, I held on to the hope that I had some iota of control as a mother. That my love for my kids and ability to keep things on track despite the craziness around me would be enough. At some point, however, I finally realized that along with the dreams of a perfect little healthy family, I also had to let go of the idea that I would somehow avoid any more "unexpected" moments. Those moments...they just come with the territory. Scheduling a surgery doesn't necessarily mean it will happen as planned due to a nasty virus that rears it's ugly head the week of. Getting bills paid on time sometimes can't happen - the money just isn't there. If I continued to believe I could plan everything out the way it would actually happen I would never survive as a special needs parent.
Recently we took Aiden for his 2nd Visual Evoked Potential eye test expecting normal results. Instead we received a phone call from his surgeon with surprising news. The test showed an increase in abnormalities compared to his first test, putting him below the "normal" threshold. We braced ourselves as he spoke of doing a surgery in the next week for increased intracranial pressure. There it was again, mocking us "Didn't see that coming"...
However now - 4 years into this journey - we were able to keep a cool head and roll with the punches. This kind of stuff just doesn't phase us anymore. If surgery is what he needed even when we thought we'd have at least another year surgery-free, then so be it. We'd consult our calendars, move things around and make it happen. We'd figure out the appropriate way to start discussing it with Aiden. We would determine the best way to soften the blow that his first season of t-ball wasn't going to be possible this spring. Despite the "unexpected" news, we now have a way of setting a plan into motion.
Sometimes it stinks that we have become so accustomed to dealing with bad news. Every now and then I get a little down thinking about how far we've strayed from our "plans" for life when we first started out as a married couple. But mostly I am able to see how many ways my life, my personality and my character has been enriched by the difficult decisions and situations that lay behind us. And that gives me hope that we'll be able to get through all of the "unexpected" moments we have up ahead.
Thursday, March 1, 2012
When Peter was in kindergarten he brought home a paper called “All About Me” where you fill in the blanks of statements like, “My favorite color is...,” “My favorite food is…,” “My favorite holiday is…,” etc. The one thing I will always remember about this form is the statement that read, “If I could do anything I would…” After reading the sentence, I eagerly looked at Peter to see what he would say. Without any hesitation he said, “If I could do anything I would sleep.”
What? Wait, timeout I said, I don’t think you understood the question. Think about if you could travel anywhere in the world, meet a famous person, or have an amazing adventure. No, he replied, I like to sleep. I kept encouraging other options like meet the President, be an astronaut, go to Africa, and so on. There was no changing his mind though. I really like to sleep he insisted.
I’m sure his affinity for sleep was due to the many hospitalizations he endured in his early years and how, consequently, he has always felt safe and comfortable in his own bed. But still, this was his biggest dream at five? I wasn’t exactly sure what to make of that, so I decided better to laugh about it and move on. Perhaps too early to dwell on his ambitions and future I thought-- or rather hoped!
I was reminded of this experience again recently when Peter brought home a similar piece of paper; this time entitled “The Real Me—Today.” The questions were a little different now that he is in fifth grade, but the answers were still interesting and amusing. The last sentence on the page said, “If I could have three wishes I would want…” Oh no, I thought, here we go again. I sure hope sleeping isn't still on the list! Typical of what I have now come to expect from Peter, however, his answers made me both laugh and cry. His three wishes were:
1) to see my cousin Tommy again,
2) to not be different, and
3) to have a mansion.
His first two responses obviously tugged at my heart, especially knowing that I cannot make them come true. The third one though caught me by surprise. Why do you want to have a mansion I asked? Because I want to be rich he said. Well then, I said, you might want to start thinking more about your answer to number nine. This sentence read, “When I finish school I want to…” Peter’s answer was “I don’t know.” I said you will have to find a way to make a lot of money if you want to be rich. He absorbed that thought for about a half second, grabbed his iPod Touch, and was quickly caught up in a stimulating game of “Angry Birds.”
As I watched him walk away I thought, he possesses more wisdom than most of us acquire in a lifetime. What Peter already knew at the age of five, takes most of us our entire lives to learn. It’s really the simple things like our own bed, our health, and spending time with loved ones that matter the most.