To the Embarrassed Parent of the Child Pointing at My Daughter


As we enter the playground area, your child immediately points to mine, calling loudly “Mom, look at her!” You quickly hush him, calling him to you to quietly reprimand him.

You’re at the end of the same grocery store aisle when your child catches a glimpse at the baby in my cart and asks, “Why is that baby so red?” You practically put your hand over his mouth to stop as much of the question as you can while hurrying around the corner without looking back.

Your children freeze, staring open-mouthed at my daughter at the library, and you get a rising panic in your eyes as you try to distract them to look anywhere but.

I recognize all of this unfolding, nearly every day. I hear all of the questions, I glimpse all of the pointing out of the corner of my eye, I notice all of the whispered comments.

I hear you, and I see you, and I feel it all, deep within my heart. And it makes it worse when you then try to “hide” it from me, from us.

You’re embarrassed, and I understand that. But we’re both parents, trying to do our best, and we both love our kids fiercely. And when you try to hide these obvious conversations that are happening right in front of us, it feels like you’re hiding from our family. It feels like the small, insignificant gap between us that your child has noticed has now grown into a wide-spanning canyon that no one wants to cross.

Here’s what I wish you would do.

author's daughter in flower dress smiling

I wish you would invite us into these conversations about us.

I wish you would close that small gap by relating to us as you would to any other family on the playground, instead of making the gap bigger by treating us as unapproachable.

When your child points and tells you to look, I wish you would respond clearly, “Yes, look at that pretty little girl. It looks like she’s having so much fun playing, just like you are!”

When your child asks you, “Why is that baby so red?” or “Why does she look like that?” I wish you would answer honestly: “I’m not sure, but the way someone looks isn’t important. We all look different from each other, don’t we?”

I wish you would encourage your child to say hi and to ask my kids’ names.

I wish you would apologize without feeling ashamed if your child is offensive right in front of us: “I’m so sorry, we’re still learning how to ask questions respectfully.” It also goes a long way if you tack on: “Your daughter is so cute, how old is she?”

And above all, I wish you would talk about differences more often. I wish you would read to your child about differences, and I wish you would positively and naturally converse about various kinds of differences, from wheelchairs to birthmarks, from Down syndrome to ichthyosis, from racial differences to wearing glasses. Ultimately, I hope that our children learn that if they have questions about someone’s appearance, they can ask you later, privately, so that they don’t hurt anyone’s feelings – because, after all, how we treat each other is much more important than how someone looks.

author's two children on the swings

So next time, I hope you don’t hide. I hope you invite us into your conversation. Instead of a steep divide that places our family on the other side with a “do not look at and do not talk to” sign, I’d rather be a positive opportunity for your child to learn how to respect and appreciate physical differences.

A version of this post originally appeared on Blessed By Brenna.

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How I Teach My Daughter About Self-Care


A while ago, I began emailing with a mother who had adopted a daughter with a different kind of ichthyosis many years ago. Her daughter is now grown, and she and I shared emails for a while about all kinds of different topics.

One of the things she said has really stuck with me as I care for Brenna’s skin each day: she told me to involve Brenna in her own skin care and health care as early as possible.

She said that her own daughter began “helping” with her Aquaphor applications at the age of 2 or 3, and just a few years later, could rattle off to the dermatologist all updates about her skin and describe any symptoms she was experiencing. This, she told me, really encouraged her independence and her self-awareness about how her skin felt, what care she needed for it to feel the best, etc.

I loved the concept, and more and more these days, I am discovering how right she was in this thinking.

Starting a few months ago, Brenna has been putting the lid on her Aquaphor jar as we near the end of her application. And in recent weeks, I’ve been asking her about her care before I do it: “Do you need lotion?” “Do you want eyedrops?”

I’ve been astounded and excited that she seems to be realizing more and more when her skin feels dry and when her eyes feel dry. I usually ask her several times a day if she wants eyedrops, and usually once or twice a day, she answers yes… even just a few months ago, the answer was always no.

Most recently, we’ve had to use a topical medicine on some areas of her skin. As soon as I carry her to her changing table, she’ll grab the tube of ointment, try to say “medicine” and gesture to the areas where it needs to be applied.

Brenna is also very aware of any pain, and if she is whining for what seems like no apparent reason, I will ask if something hurts. She answers “Yeah,” I ask “Where?” and then she’ll point to her hands or feet or to her g-tube site if they are causing her pain.

In the same way that we teach independence to children by training them to use a real cup instead of a sippy cup, or teaching them how to brush their teeth by themselves, I want Brenna to learn early on how to care for her skin. Because I think this will open up a lot more opportunities for her as she grows up – to participate in more activities, to attend more events and even to travel more.

I know we will feel more comfortable as her parents letting her go to a friend’s house or a birthday party if we know that she will be able to tell an adult if she doesn’t feel well or if she needs something… and I know other parents and family members will feel more comfortable with being responsible for her if she has an active role in her care.

Of course I know that general education will be necessary in a new situation or with a new person, but teaching her early to care for herself and to be aware of what her body needs will only foster independence and minimize reliance on other people to care for her.

If she comes home really dry from a friend’s house, I want the burden to be on her to ask for lotion, not on her friends’ parents to have to pester her to apply lotion. If she starts to feel unwell while playing outside on a warm day, I want her to be able to recognize this feeling and know how to cool herself off.

Our dermatologist “warned” us that Brenna will probably go through stages as she gets older – sometimes she will take a very active role in her skin care and look forward to baths and lotion… but there will also be stages where she fights it. (Like when I know I’ll feel better if I don’t eat a half bag of Doritos… but I fight that and down those chips anyway.)

Seeing the early stages of Brenna’s interest in caring for herself is exciting… and when I step back and write about it, I realize my baby has really moved into the true toddler stage. Learning to eat has been a huge step toward independence for her, as she loves to self-feed, and I think she is discovering how proud she feels by doing things all by herself.

This post originally appeared on Blessed By Brenna.

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Caring for vs. Catering to My 'Threenager'


We are currently living with a threenager.

A threenager, if you were wondering, is a 3-year-old with the drama and attitude of a teenager. Like this, for example.

There are temper tantrums, very opinionated opinions and whining. So much whining. Somebody stop the madness.

To be honest, I’m finding it difficult at this stage to find the balance between caring for Brenna without catering to her.

She’s a smart cookie, and she’s learned quickly that she gets some specialized attention.

She knows that many times, bigger kids (which tends to be most kids) often accidentally hurt her, so if there is any contact at all with another child, she’ll cry foul – even at the slightest bump. One time, I even caught her simply anticipating a bump from Connor as he bounced around on the couch, and she cried out “OW!” before he even touched her.

The most frequent “buts” that come out of her mouth play off her physical limitations: 1. “But it’s HARD.” and 2. “But it’s HEAVY.” And it can be difficult to decipher what is actually too hard and too heavy, and what she is merely trying to get out of doing.

The girl likes to be coddled. And with needing to give her extra food and drink, frequently cover her with a blanket when she is too cold, put ointment or medicine on her skin, and any other care, she is has become S.P.O.I.L.E.D.

She cries if I pick the wrong outfit. And then she cries later saying she is hurt. Is she actually hurt, or is she being as dramatic as she was when I chose a pink shirt over a striped shirt? Your guess is as good as mine.

Clothing choices are not to be taken lightly…

We’re battling, this threenager and I. And spring break this week really didn’t help. That’s a whole lot of togetherness with someone whose automatic response to you trying to leave the room is “I wanna come with!” And whose automatic response to anything she doesn’t like is dramatic wailing – from the wrong pair of shoes to a dinner that doesn’t include summer sausage.

I’ve been in quite the rut lately, and I blame the lack of sleep and the constant whining. I apologized to Connor the other day for my frustrated behavior, and he asked, “Why?” Well, I told him, sometimes being a mommy is hard.

“Because of taking care of Brenna… when she is crying?”

Nailed it.

Please, someone, tell me this stage doesn’t last long. Anyone??

This post originally appeared on Blessed By Brenna.

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