Tag Archives: the courage to care

Choosing Legal Guardians

So, everyone writes a will, right? And, choosing guardians for your kids, you all do it, right?

It is often a sister, a brother, a close friend. People say yes, because it is highly unlikely that both parents will die.

What about our situation? Two years ago we started to get really serious about looking. Robert’s heart was doing bizarre things and I was blacking out with my blood pressure. Then we got caught up in the diagnosis, the treatments and then more diagnosis and treatments and we didn’t want to face the fact that we could both die, and that could was more likely for us than for most couples.

We’ve had a few volunteers for Aidan, but nothing on paper. We’ve had a couple of offers from friends of friends, nearing retirement, but with our isolation situation, we don’t see either of those couples very often.

So, it feels like we are back to square one. Our oldest son is 14, so in a couple of years, and with support from our families and friends, he could push for emancipation, and stay in the house.

We could send them to London to live with their “brother,” but as soon to be newlyweds, I don’t think that would be best for their relationship. Not to mention that fact that grieving the loss of your parents would really suck in another country, even if the people you are living with love you like their own, and you love them the same.

All of my siblings are all old enough to be or are grandparents. Robert’s siblings don’t have lives that would be served by dropping 2 kids into their laps.

I have a few friends who have offered to wash my hair, but take my kids? I can’t even imagine. Maybe the volvo mechanic. Or one of my physical therapists. Their dentist is a nice man, maybe him.

I’m don’t want my kids to end up in foster care because they are too hard to handle, or too medically fragile.

So, what’s a mom to do, except to stay in denial about it, continue to rest to get well (instead of fight to get well)?

That has to be my new mantra. I am going to rest to get well. Allow healing to happen rather than fight for it and push for it. Because I have no other answers.


Are YOU Overwhelmed by me?

This is more of an inquiry than a post. And trust me, if you are reading this post, it is unlikely that I am talking about you. Really. Unfortunately, this inquiry will NOT be viewed by the people I most want to see it. I want to speak to the people who have dumped me, cut me off, let me go, but they aren’t here reading my blog. They aren’t the ones who will be willing to answer, because they have vanished.

I had a dear friend tell me that she had taken a break from me after my diagnosis because I was “all-Lyme, all the time”. It made me realize how easy it is for me to drive people away without intending to. But, at the same time, I struggle with the meaning of friendship. It makes me wonder why we, in this culture, think it is necessary to take breaks from friends when they most need us. I can’t take a vacation from Lyme Disease, even though you can take a vacation from me. I can’t pretend that my kids aren’t sick. I have to live out loud. If that is uncomfortable for you, I really do want to know why. I have no intention of changing it, but I do want to know.

Struggling with a life threatening illness, one that you now share with your husband and your children is not easy. There is no cure. There is no protocol. In order to make progress, we need to be continuously aware of our diets, our environment, our treatments, our exercise, our stress levels. That would consume the healthiest of people. Yes, 17 months down the line, I have a better container around our illnesses, but frankly, it is still Lyme, most the time.

I want to be brave. I want to yell to those friends who have left me: “TELL ME WHY YOU HAVEN’T EMAILED ME IN 11 MONTHS?” or any number of questions.

I want to know what the challenges are to reaching out to a sick friend. Theorizing alone is no fun, so I’d like to invite my readers to weigh in on this.

Why do friends let people with chronic illnesses suffer alone?

If you sigh every time one of your friends emails you about their illness, posts something on Facebook about their illness or invites you to events surrounding their illness, why? What is underneath that sigh? Is it regret? Is it fear? Do you roll your eyes, wishing they could just go on with their lives? Do you want them to “cut the drama” and go have a beer? There will be no judgment for your honest answers. Just share them. Use an alias. I’ll take my restrictions off for comments so they can be private for this post! Share for me. Share for my readers, many who struggle with invisible illnesses as well.

How can we, as “friends” offer help to someone who is consumed by their illness when what we really want to do is just click “delete” or “hide” when we see their name in our inbox or on our newsfeed?  I can assure you, they are more overwhelmed by their illness than you are.

Is running away, cutting them off, making excuses the best way? For you? For them?

And to those of you who have the strength, the courage and the willingness to stand by the side of your friends with chronic illness, why do you do it? What draws you to support when others are repelled?

What sustains me in this illness is my Faith in people (which is sometimes flimsy, at best), Trust in friendship, and having companions on this Journey. I have no understanding around conditional friendship. Maybe you can teach me.

As my mother used to say, “If you can’t stand the heat, get out of the kitchen.” To all the beautiful friends of people with chronic illness who refuse to leave the kitchen, many thanks.