I have still been thinking about this blog, people going through similar journeys, and living the journey. I just realized I have only one post from this calendar year and decided to do something about it. I hope to get more regular about it in time. The reason I've been absent is that I'm soaking up the life I have available to me right now, knowing that some of those options might not be there in the near future.
There is a lot of stress in our family now, due to a statistically terminal diagnosis in a loved one. If you've read a number of my entries or know me personally, you're aware that we had several funerals over the course of a just a few months - that ended just over a year ago, and the current patient was diagnosed in January. It's been tough. Very tough.
What do you do when stuff like that happens? Most ask why. It's a fair question and one that we may not get a satisfactory answer to in this lifetime. Some avoid it or act like everything will be fine out of a belief in the power of positivity. Some despair because it is so sad and feels so unfair to everyone involved. Everyone grieves differently, and in the face of a terminal diagnosis, grief is appropriate.
This is a topic and experience where I feel like we can be a little more mainstream. After all, everyone deals with it. And yet, since we are atypical, some parts still look different.
I personally choose to react and prepare with statistical and logical reason, but continue to hope miraculously. We are Christian and believe that God CAN do anything. Sometimes, however, it is not in his plan. My choices are hedging bets, perhaps, but it works for me.
M was despairing recently about the number of losses and starting to feel a lot of anxiety about her own health and that of her parents - she has seen parents closely related to her die, as well as their children dealing with it. This is perfectly reasonable for her to experience, but how many kids would be able to turn a corner in about 5 minutes because of this scenario?
me: "OK, so the population of the US is ______." Get a calculator, and I'll look up the numbers.
M: "OK, I have the calculator." Tears stop.
We divide the number of cases of one particular kind of cancer in a year by the population of the US, finding it to be far less than 1%. M looks relieved and confused.
Next, we divide the number of cases of another kind of cancer in a year by the US population and find it also to be far less than 1%. She looks much cheered for an instant, then positively perplexed.
We add them together to find that there is maybe 0.1% chance (rounding up) of being diagnosed with either kind in a year.
M: "So why have we known SO many?!"
me: "I don't know. It's just really bad luck to know 4 cases considering those odds."
M looks thoughtful, but much more peaceful, and goes about her day.
She repeated those odds to a psychologist later, so I know she is reasoning her way through the experiences. It works for her. For some, it would not. I jokingly tell people I'm cursed and not to get close to me. However, a couple of decades ago after losing my second peer-aged friend to cancer, I did feel that way. It's difficult to navigate.
A highly gifted child may be able to reason their way through it more easily. I don't know. M is highly logical and literal, so it seems to help her. However, she also understands the diagnosis at a deeper level than her age should indicate, making things harder. I know so many parents who have tried to get psychological help for their gifted child (which tends toward depression, anxiety, etc.) only to find that play therapy is tried. For kids like M, who gave up toys at an alarmingly early age out of boredom, this is obviously ineffective.
When life feels out of control, we try to control it. Call it anxiety, or call it perfectionism - it's painful and a coping mechanism either way. We have put boundaries around how much time we spend in the throws of it, but making sure we are in the throws of it; being apart from the patient for too long makes life hard, as well. It's like walking an emotional tightrope.
We find things that are meaningful to the patient and do that. For my husband, it meant hearing she wanted licorice and buying her every flavor of his favorite brand. She is an enthusiastic and appreciative person who is SUPER fun to please & not too difficult to make smile, so this is especially satisfying.
I decided to update the house a little. I got rid of some things I never liked, and had a Goodwill shopping spree (yes, I am that kind of nerd) to get some more fun and happy things into our home. I also got some scented shower gel that makes me happy and improved my mood that way. One of my closest friends did the same, which made me feel even better. They are small things, but they work a little.
We still have our bad days.
One day a few months ago, I was not interested in getting out of bed (although I did get out of bed), and M came into the room and gave me a hug. I had been crying, which sadly does not throw her at this point. Here's how the convo went:
me: It's times like this that I wonder if school would bet better for you than homeschooling. There aren't many, but this is one of them.
M: WHY?! [with wide scared eyes - oops]
me: Because with homeschooling, you have fewer breaks from all of the trauma and grief than you would if you were in school. It would be a break from the emotional environment.
M: Not me!!! I mean, these are life skills! I need to learn this stuff!! Everyone does. At least I can talk about it with you and learn how to deal with it now instead of later. I'm glad I'm home during this, and I'm glad I'm with _____ during this. It's important. [returning to her nonchalant mannerisms]
Bottom line: I was schooled by a 10 year old.
In the midst of all the stuff we're going through, we have been able to support a charitable effort that is meaningful to the patient we are supporting. We have been able to support the rest of the family of the patient in various ways: geeking out over cleaning out a freezer (seriously) before a grad party, learning about volleyball, buying random nail polish, doing a bunch of teenagers' laundry, cleaning out a fridge, helping with a new puppy, sitting with the patient, starting dinners, etc. We are finding and strengthening a number of relationships through the experience.
We had a great family vacation, as well. M has found another option for classes that she is absolutely loving, for a total of 3 sources of classes for her outside our home (but still technically homeschooling). My husband is growing into a job he is loving and good at. We are cooking more at home and having fun with fresh local produce. I'm meeting friends regularly just to chat. We're meeting other families at events and getting out of the house. We are filling the cupboards and freezer with some of the fresh local produce to use this winter and improve our menu and ease of meal planning this winter. Finally, we play games at home and with friends, and card games are common at the house of the patient.
Even in grief, there can be great joy. Don't miss the joy from focusing too much on the grief or from avoiding it altogether. Although we wouldn't wish the hard stuff on anyone, we would NEVER give up what we have gained through the tough experiences.
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