“Is he sad?” Or, how my daughter is learning empathy from her own needs

With her dry and itchy skin, Brenna loves to have her back scratched (don’t we all?) I’ll scratch other areas for her when they get dry, too – her cheek or her arm or her foot – and she always sits still and quiet because of how good it feels to her dry skin.

One day, I was sitting on the floor as we played and I pulled my pant leg up to my knees to scratch a spot on my leg that itched. Brenna noticed immediately and hurried over…and, with her little swollen fingers, began scratching my leg for me.

“Does that feel nice?” she asked me, and I smiled: “Yes it does, thank you.”

As Brenna has grown up, we’ve been very conscious about helping her learn self-awareness, which will eventually morph into self-care and self-sufficiency.

At three years old, she will tell us when she is tired and wants to sleep. She will tell us she wants to take a bath. She will most definitely tell us when she is hungry or thirsty.

Brenna is able to describe if something hurts and where, fairly specifically – elbow instead of arm or thumb instead of finger (thanks to her long daily bath, where we sometimes talk about different body parts as we wash.) If her skin hurts or gets cut, she will ask for medicine. And she is even becoming reliable at deciding if she is too hot or too cold.

In an effort to encourage this self-awareness and self-sufficiency, we often ask Brenna how she is feeling. Not only physically (though that is the majority of our questions at this point) but also emotionally.

And what I have been seeing in the last couple of months is a noticeable development of empathy in my daughter. Perhaps a direct result from helping her learn to be aware of how she is feeling, she is now very concerned with how others are feeling.cbwIMG_9963

On Monday, I hit my knee hard on the van floor, leading to a stream of “OW” under my breath…and then all my pain was forgotten when Brenna questioned what happened, and then asked: “Can I kiss it for you?”

If someone gets hurt, she leans in with a kiss or a suggestion of medicine. If my expression changes, she’ll notice and ask “what?” If she does something for someone else, she’ll ask “Does that feel nice?” She asks questions about others being hot, cold, hungry, hurt, itchy…just as we have those conversations daily in our house.

And, perhaps best of all, Brenna will always seem to notice if a child is crying, whining or upset…and even if that kid is across a crowded room, she will ask me “Is he sad?”

Over and over, I’m being surprised by what results from Brenna’s health care needs – with both of my kids. Where I have felt guilty that Brenna’s extra attention would cause resentment in Connor, or been worried about the anxiety that Brenna’s surgeries and doctors’ visit may cause, I then look up to see them both being molded into more caring, compassionate, and sensitive children who, more often than not, have more concern over others than themselves.

So when Brenna asks “does that feel good?” as she helps me tend to a scratch, I can assure her that yes, her help does feel good – in more ways than one.

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Decision fatigue and daily skin care

Lately, I’ve been reading with interest about the phenomenon of “decision fatigue,” and the more I read, the more I feel like I can relate to it.

Bloggers and journalists point to many different cases of people paring down their daily decisions so they have mental energy left for making more important decisions- from eating the same thing for breakfast to wearing the same general “uniform” each day.

I’m no President Obama when it comes to having to make daily decisions, but this affects me too. This is why I don’t like the mall and love StitchFix. This is why I menu plan a week in advance with many of the same meals on rotation. This is why I set out my clothes the night before – usually jeans and a striped top.

Making decisions often drains me. If I’m faced with too many decisions, even seemingly simple ones like what to wear or what to eat or what time we need to leave the house, it eventually overloads me and drains me of the patience that I need to deal with things that pop up during the day.

Decision fatigue is also a huge reason why I don’t change up Brenna’s skin care routine each day.

All it takes is to publicly write about a health problem, and suddenly strangers come out of the woodwork with suggestions. Someone’s daughter has excema and this cream really helps. Someone’s aunt tried this lotion and swears by it. Someone’s sister’s best friend’s dad’s cousin thinks this product is the answer to Brenna’s skin condition.

Save for the crazy people – because there are a few of those too – I greatly appreciate hearing about others’ experiences and what has worked for them. I even run a lot of products and suggestions by Brenna’s dermatologist, and he’ll tell me any concerns he has or say “if you want to try it, go for it.” But when it comes to actually trying anything new on Brenna, the decision fatigue sets in. We get pretty set in our routine, and it’s working well for us.  f something isn’t working well or we encounter a new problem, we look for new solutions. We ask other families who are affected with Harlequin, or ichthyosis in general. We ask our medical team.

Maybe there is something that works better. But it’s tiring chasing after better. It’s tiring trying new things and deciding what to use, how much to use, where to use it and when to use it.

too many options!!IMG_8901.JPG

But if it’s working, we don’t go out of our way to try something else. We’re completely open to Brenna trying new products as she gets older and chooses to do so herself – and can explain how something feels. (I hate the thought of a new product stinging or not feeling good to her without her being able to express that right now.)

With little ones at home, our days are jam-packed with enough decisions as it is, and the rest of my mental energy is typically spent on my writing projects. Adding in a new part to Brenna’s skin care regimen usually feels like too much in the day-to-day, especially when we feel like what we’re doing is working well enough for us and for her.

Do you get decision fatigue? How do YOU simply your days so that you’re not making too many decisions?

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Causes and effects: a letter to my child’s rare disease

Dear Harlequin Ichthyosis,

Yes, I’m talking to you today. You, whose name I couldn’t pronounce for days after hearing it for the first time. You, who appeared unexpectedly on a December afternoon 3 years ago, causing panic and fear on what should have been a joyous day.

I know you now. I wish I’d never met you, because that would make my daughter’s life easier, and I would do anything as a mother to make her life easier and more comfortable and happier. But I know you very well now, and I understand you more every day.

cBrenna 6 months 042

Here’s the thing, HI (I think we’re close enough to be on abbreviation terms):

Your physical causes are certain, written into medical textbooks and clinical research.

You cause the production of excess skin. You cause calories to be consumed at a rapid pace. You cause the inability to sweat and trouble regulating body temperature. You cause skin to allow germs to enter and overtake, causing infection. And in many cases, you cause death. You nearly caused death for us.

As a rare and severe disorder, your emotional causes are expected as well.

You cause grief, you cause fear, you cause frustration, you cause loneliness.

But your effect… now that, my friend and enemy, is on our terms.

Where you cause grief, we can choose to extract joy.

Where you cause fear, we can choose to look ahead with hope.

Where you cause disfigurement, we can choose to see beauty.

Your ultimate effects on our lives are decided by us. Your effects worthy of our energy and our focus are the stories of unending love we are embracing, the stories of dazzling beauty we are telling.cIMG_1247

HI, you’ve caused some changes in our lives – some hugely significant and others in a million little ways.

And your effects will shape and mold and define us, for years and years to come…but we will determine those effects. We’ll strive to leave the negative ones behind and focus on the positive. We’ll acknowledge what you’ve caused in our family, but we’re choosing to tell our own story about how you’ve affected us…a purposeful story of fierce love and intense beauty.

Tomorrow is Rare Disease Day. Learn more about Brenna’s skin condition here.

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