When I saw the topic that we were going to discuss a bit today, my first thought was that I am the perfect person to discuss this - I'm the child of someone who had a chronic illness - my Mom. But after thinking about it and even asking my husband, I really wasn't sure what to write about. I had a relatively normal childhood, developed into what I believe is a good adult, and now am raising a family of my own. I wondered if I should discuss those things that I missed out on growing up, but that list goes on and on and really isn't any different than the lists for most other kids my age. I thought that maybe I could discuss the effect that it had on my folks marriage, but they were happily married for 36 years, with the regular levels of marital strife, nothing more. I could also go to great lengths to discuss the character of my Mom, Dad, and myself - having to cope with a chronic illness is tough and changes you in ways that I'm probably still not aware of. But that too can happen to someone else for a variety of reasons, and that person might have more insight. So I figured that I'd talk about the one thing that is different about my story. My mom passed away a bit over a year ago, from something other than her chronic illness.
But a bit of background first. My mom and dad were married and had one kiddo - me. They were both well educated and seemed to have it made in all respects. Then, as I hit elementary school my mom started to slow down a bit. She started working part time (at the time I wasn't quite plugged in enough and not enough was known about what she had for me to be concerned), and she started "resting" more. She had connective a tissue disease as well as some orthopedic problems that had been treated for years. But this was something different. She searched (with the help of Dad and some friends and doctors) for years to figure out what the heck was going on with her body and why it was failing her in odd ways. She was eventually diagnosed with Chronic Fatigue Immune Deficiency Syndrome (CFIDS). She also had a hypothalamus that was starting to fail in it's regulation of her temperature (which may or may not have been related), so our house got progressively colder.
Anyway, slowly over time her health failed, but she still was very high functioning. She learned how to cope with her limitations, and we as a family learned how best we could help her out and manage her illness as well (it really is a family affair). Looking towards the future I saw my Mom and Dad getting older, and my mom needed higher and higher levels of care (and who knew about Dad). Before she died she was able to care for herself, but had odd schedules and many limitations on activities. She could go out and do things, but there were sacrifices that had to be made on her part and ours in order to make those things happen. The thing that struck most people about my Mom wasn't that she was ill in any way, but that she was so strong and tough to be able to manage as well as she did with this illness, and at the same time, so giving, encouraging, and loving. She was an impressive person all the way around. So, our looking to the future (or at least mine) always involved Mom and/or Dad getting old and needing assisted living or some type of help medically and physically. It was a discussion that she and I had on several occasions, necessitated by the fact that both she and Dad were getting older, and who knew, just in case, etc.
So you can imagine how startled I was when she and Dad called and told us that she had a brain tumor - a very bad brain tumor that would eventually kill her. Here I had planned on having her around for years and years, albeit in a nursing home situation after I was no longer able to care for her, but that was 15-20 years down the road in my mind. What a shock to hear that she had an inoperable brain tumor and only a few months to live. She passed away two months after she was diagnosed. The one thing that I would have bet money on to kill her in the end didn't. Something completely different snuck up on us and got her. How startling that thought was.
I guess in the end I am the person I am today in part because my Mom did have a chronic illness. I learned to not only be patient with others, but also with myself as we all have limitations at times. I learned that not everyone that is disabled or ill has a visible sign of it. Most of all I learned to treat everyone with respect and that everyone contributes in their own way. These are lessons though that most parents try to impart on their kids, and mine did just that. While her time here was cut short (she was only 59 when she died), her presence lives on not only in me and the kids, but also in all of the lives she touched. So yes, living with someone who had a chronic illness changed me, but in the end I like to think that I'm not that much different than the next.
This is originally posted over at DC Metro Moms.