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 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.