I got my first pair of glasses when I was in 5th grade. It was the late ‘80s and my favorite color was pink. The optician gave me the choice of tinting my lenses and so I naturally picked pink. When my glasses arrived with both pink lenses and pink frames I realized that I had made a big mistake. I don’t remember wearing those glasses for more than a few days as everything I saw just looked, well, rosy.
Generally speaking, I consider myself an optimistic person. I tend to believe that anything is possible and nothing cannot be overcome. When my son was first diagnosed with Cystic Fibrosis my husband rightfully began to worry about the financial aspect of having a child with a serious, chronic illness. You would have thought I had on my rose-colored glasses from twenty-five years ago, as I truly felt we could handle whatever financial obstacle lay before us. Of course, that was before the bills began rolling in. After only a couple of months, I began to understand my husband’s concern. I have become an expert bill-reader and insurance company negotiator. And I have learned to always double check every statement and to be super polite and persistent when calling to question decisions on coverage.
Cystic Fibrosis is a progressive disease and it is unpredictable. The older my son gets the more medication we add to his daily arsenal. His current daily prescription count is at 10 when he is well and can increase up to a dozen or more when he is fighting something as “simple” as a cold. In addition, he sees three specialists on a regular basis, as well as annual visits to his pediatrician and surgical clinic. The co-pays add-up…a lot. The financial burden is starting to become just that, a burden.
One day a friend was over with her young daughter to play. While the kids played, my friend and I got some time to talk. Somehow the conversation turned to my stress over the financial burden that the medical bills were causing. I remember very clearly the shock I felt as my friend told me that I was a good mom for continuing to take my son to the doctor and fill those prescriptions despite the heavy financial cost. As a nurse she had seen parents that had chosen not to incur those bills and not provide that care for their children. Frankly, I had never even considered not providing that health care for my son. It simply wasn’t an option to me.
A New Perspective
We live in a time where bigger is better and more is most important. “Keeping up with the Joneses” is a saying we are all familiar with and guilty of to some extent. The irony of the phrase is not lost on me and I often joke that if you want to keep up with these Joneses it shouldn’t be too hard (our last name is Jones). But really, as a society I have found that the more we have the more we feel we “need”. A bigger house, more expensive clothes, a luxury car, extravagant vacations, and the newest and latest electronic devices have all seemingly become “needs”. There are a myriad of explanations for these “needs” that I have heard (and said!) over the years, but are they really explanations or simply justifications for why we have to have things that our neighbors have. This is a question I have been wrestling with lately as I have watched our budget tighten in order to accommodate the medical bills.
This month I was tested, as my son dropped the iPad. He was laying in his bed and the iPad slipped from his hands and landed squarely on the sharp corners of the IV pole that rests next to his bed. The corners gouged the iPad in a way that has rendered it a total loss. There were tears shed as I told the boys that it would be several months before the money would be available to replace the broken iPad. My husband and I agreed that it was time for the kids to remember and appreciate what life was like before iPads and iPhones. Admittedly, it has been very liberating. The kids have barely noticed that it is missing.
My Imperfect and Rosy Life
As money has gotten tighter I will confess that I have struggled with not being able to do everything or afford the things that many of our friends have. I have yearned for bigger vacations, nicer clothes, and more money for after-school activities. But ultimately, I would rather have my son than any of those other things. While I’m not there yet, I feel that I’m grasping one of the more important lessons in life and that is that money does not buy happiness. Money is also not necessary to have a good time or make incredible memories. What brand of clothes my children wear or the size of the bedroom they sleep in will not determine their success in life. The reality is that without a scientific miracle, my son will die much too soon. When that happens, it will be the memories we made together as a family that matter most. Those memories can be made wearing jammies reading stories, or taking a family walk on a Sunday afternoon. They can be blowing bubbles on the deck, having a dance party in the living room, and cooking pancakes together in the kitchen. I hope I never forget the sound of his voice as he climbs on my lap at the end of the day and says, “I love you Mom.” The most important things are those that money cannot buy and if we were to measure those things, our family would be rich.
So, while my house may be older and my children are wearing hand-me-downs, I’m trying to focus on those things that we do have. When I do that, I see that we have truly been blessed beyond measure. I think I might just need another pair of rose-colored glasses.
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