Why We Need a List
I am mortal.
This may not come as a shock to some of you, but the way that some of us “superhero” Moms swoop around, dominating our day with near-magical ability to multi-task, you would think that some of us forget. Believe me: I am at a heightened state of awareness as of late. And I use the term superhero lightly. Though Wonder Woman is my Spirit Guide, there is a Zan to my Jayna. I am part of a team that keeps my family going from day to day: my husband (who I have promised not to write much about) plays the extremely important role of funding our lifestyle. He works long, hard hours, travels often, and is very successful in his career because of the time and focus that he must put into it. I often see successful Dads being demonized in family movies as being aloof, remote, and somehow at fault for choosing career over family – like it’s a binary choice.
While there are many people who are out of balance in this regard, my man is not one of those stereotypes. I have raised my children to understand how much love it takes for their Dad to work so hard for us, and what we have because of him. Were I to be single, or have a less successful partner, I would probably have to claim disability, because the truth is I cannot work right now. However, because of the nature of our individual parts in the team, there are things that he misses. The reality is, because both of our children have been diagnosed with the same genetic syndrome that I have have, Ehlers-Danlos Syndrome, I am the one that has naturally fallen into the role of caretaker. In a perfect world, we two loving parents would sit at every doctors appointment, holding hands, asking the doctor thoughtful questions that we have both written down, and comforting each other afterwards.
Cut to my reality: I run around with my hair on fire, going to my own scheduled therapies, doing errands, receiving calls from school nurses for injuries, headache medicine doses, and for the past three months, managing my daughter’s persistent TBI symptoms (traumatic brain injury – yeah, that brings up another point. Will discuss in a minute), or pulling one kid or another out of school to go to appointments. Not only are we not at these appointments together, sometimes he doesn’t even know that we had one. We have so many. And I’m not saying that this is right or wrong, it just is. His head is buried in work all day, and when he comes home, two babbling children and one irritated mom overwhelm him with a day’s worth of stuff.
If he has been traveling, sometimes it’s several days, so we try to bullet point the important stuff. I summarize as much as I can about major breakthroughs, new diagnoses, new therapies, etc, but I am the one that was the Pediatric Nurse for 10 years. This is my area of interest, not his (and I mean professionally, not cares-about-his-kids.) I have naturally dominated the management and implementation of the “medical care” of our kids, and until now, I have not thought much about the division of labor. In fact I was congratulating myself on not being one of those spouses who has unrealistic expectations by being bitter that there is a division of labor. For us, there has to be.
But lately, I have been in a different frame of mind. I’m not exactly sure what has put me here. Maybe it has been cresting 40 (two years ago) and marching through this decade. Maybe it was dealing with the death of a family member, and how terribly she prepared us to deal with her estate after years of her denial. Maybe it is the popularity of “prepper culture” and the ever-increasing “Zombie-attack scenario” jokes that have gotten people to first laugh, and then think critically about whether or not they have the skills to survive in a post-society state. It is also because I have become increasingly aware that chronic illness is not a crisis. It’s my Life.
And the crises still come.
I’m sure someone has mapped out the stages of acceptance about a new diagnosis (I think they line up pretty closely with the stages of grief.) One of the things that happens when you are first going through the early stages, is that your Life is consumed with the newness of it. You keep waiting for it to pass. You keep saying “When this is over I’ll…” Only over time do we learn that this is our new normal. It may change, as in improve or worsen, but it is now our Life. I don’t know about you, but there were periods where I believed that somehow, because of EDS, I felt like I had “paid my dues,” and that I was now immune to other events. So, when any thing else would happen, I was shocked! What?! A death in the family! But I’m plagued with migraines! Huh? My kid has a concussion? (We no longer call them concussions?) It’s a traumatic brain injury and it will take her up to a year to heal?! These are just a few examples, but you get my drift. I can no longer afford to feel like a person who is in crisis all the time, because then I will be exhausted and burned out when each new crisis comes. Houses catch on fire. Car accidents happen. And yes, people die. I may die.
“Hon, can you name any of our kids’ doctors?”
Well there you go. Being a superhero is not all it’s cracked up to be, especially when we are, indeed mortal. You may have read my post about creating a Living Will and Power of Attorney this year (for a simple tool to DIY this, click here.) I am really glad that we hired lawyers to go through this process, because many things were explained to me that I would not have understood. There were all kinds of scenarios that we went through: that one of us dies, that one of us is temporarily incapacitated, that we are both incapacitated, or that we both die. We had to think about setting up guardianships for our kids, trust funds, medical proxy for each other, etc. After this process, I realized that I, as the bill payer possessed all of the passwords for our financial websites, and that were I to be, uh, incapacitated, my husband’s access to that information would have been as good as yours. And so we fixed that. But with this simple question about doctors the other day, I realized that should anything happen to me, or to the both of us, it will be near impossible for anyone taking care of my children to figure out who has been managing their care. And, for anyone who has had to track down medical records before, this would be effectively screwing my successor.
So today, I will be making a list of doctors and their phone numbers to go on our fridge. I am not trying to invite tragedy – I do not believe that taking steps to manage crisis is a reflection of paranoia or pessimism. Rather, it is one way I am helping my other half know that he is a part of the team, and should something happen to me, it will make it that much easier for him to take up the reins. People do not need to play equal roles in a family to be equally important. One of the best things about my partnership with my husband is how incredibly different we are, and how we have divided our tasks accordingly over the past 18 years. I don’t like to think of Life without him, or of him surviving without me, but I think if you love someone, you have to imagine it.
And then you leave them tools.
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