This Lucy girl is 3 1/2 now and she's just amazing. People often ask me how she is doing and how her sight is and all I can ever say is just what a miracle she is and how watching her learn and grow and develop often brings me to tears. It often hits me in the simplest, most ordinary moments - her picking up a cheerio on our tan carpet, watching a marble roll across the church floor then running to pick it up, climbing on top of the counter to grab the ADJ gummy vitamins. Sometimes I'm just stopped in my tracks thinking about how normal and beautiful it is to watch her live her life - so happily and confidently.
We still really have no idea how her eye conditions will affect her future, but we will deal with that when it comes and be grateful for the beautiful life she is living now.
At her most recent eye appointment (which she HATED, do not let these happy pictures fool you) it was recommended that she start wearing glasses. The level of correction that her lenses give her is so minimal that they would never recommend it for another child her age, but they say that when you have other vision issues, they just want to give every benefit that they can. I was mostly convinced when we decided to get transition lenses that will change into sunglasses when we go out into the sun. She absolutely DOES need sunglasses and sometimes it's hard to remember them or we are just walking from the car to a building so she's not wearing them and the sun hurts her eyes. I think it will be so nice for her to just get used to wearing the glasses and have them automatically protect her eyes.
(Pictured left: Glasses that she picked out at the doctors office that day. Right: Glasses she ended up picking and purchasing. )
I also wanted to add a bit in her about her skin. Early this summer I set up a Dermatologist appointment for Lucy and had her skin completely examined. We liked the dermatologist and I feel happy that we have added another person to our care team for Lucy. We will start going on annual skin care visits and she will have that as part of her care plan. Clearly she's young and we weren't particulaly worried about anything right now, but I wanted to talk to a skincare expert and help put together a care plan for us to follow. I've been worried for a long time about what the best way to care for Lucy is. When she was a baby they told us to apply sunscreen multiple times a day, and to put it on her whole body first thing even if we weren't sure she was going outside. (Also, to note, the internet/google swears that sunscreen is poison and you're a terrible parent if you use it.)
I guess I just wanted to talk to someone about what wearing a hat/sunscreen realistically looked like. I wanted to talk about regular long sleeve clothes vs UPF clothing. I wanted to know if it was okay if she wore a regular swimsuit if she was well sunscreened or if she really did need to be in a long sleeve long legged sunsuit. If she's wearing long sleeves will it protect her, or does she need UPF clothing?
Overall, I feel very happy with our discussion and I left the meeting feeling confident in my ability to care for Lucy's skin and protect it from the harmful rays of the sun while still allowing her to have freedom and enjoy her time outdoors. Using a combination of hats, sunscreen, protective clothing, etc.. we will be able to help her have a childhood that doesn't feel overly restrictive while still making sure she's protected.Looking back at my pictures from the summer, I catch myself wincing when I see pictures of her bare legs exposed, or without a hat - but then I remind myself that there are lots of ways to protect her from the sun and that we are doing a good job. I still have a ways to go to make sure I'm remembering sunscreen for ALL of my kids, not just her - but we are doing better and will all be well protected because of it.
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