This month there are a few things that I must-do that I don't particularly want to do. Most of them have to do with asserting myself as a parent and, as they say, "advocate for my child". Oy, I am not a fan of starting conversations like the ones I need to have this month, it's been stressing me out. I also need to advocate for myself a little bit and I'm not really looking forward to how that conversation is going to go, but I'll be happy when it's over.
Yesterday Kalea and I made our way to the Children's for her regular eye appointment. She was SO well behaved the majority of the time, and the rest were just minor hiccups that happen anywhere. The optologist we had was one we hadn't met before and I had to tell her to use the shapes that Kalea is familiar with or she won't cooperate for the exam. Once she did that she was able to get a great exam and was a lot more patient with Kalea. Then we waited for our specialist. It turns out there are a bunch of student doctors rotating with her right now so for the more intense part of the exam we had Adam. Truth be told, Kalea cooperated much better for him than she has EVER cooperated for anyone else there. It was great, and if you know Kalea's doctor, who's a little bit of a sharp shooter and not overly warm, it was nice to have this guy as a buffer, to help her bedside manner be a little more friendly, knowing that I was going to have to start an uncomfortable conversation. We got through the whole exam pretty well and the whole time I'm wondering when I'm going to get a chance to bring things up with Dr.C because she talks a lot and very fast and sometimes, so much that your head spins and she's out the door before you get a word in. So we got to the end of the appointment and she says "Well I think we'll see her again in the summer" and in my head I think how in the world am I going to start what I want to say. I literally had no clue so I just opened my mouth, and a miracle happened. I am pretty sure that what I had to say came straight from Kalea's Heavenly Father. We were able to discuss some of her behaviors that indicate to me and others how frustrated she is with her eye turning. We discussed her "sensory issues" and the access she has right now to aides who can help her adjust post-op, who we would really love to have help us with that, who we won't have ready access to when Kalea's 8 (suggested age for surgery).
At one point I was so bold to literally say "We can't just talk in circles about a surgery that could help her, that you want to delay until she's 8. I want to know every detail of what that day will look like start to finish, including what actually happens in that surgery, so as her parent I can make an informed decision about what's going to be best for her. I need to know so that we can start explaining and preparing her for that, and we can't wait until she's 8. I don't want her to have the surgery because other people notice her eye, I want you to help us because she notices her eye. So please help." GULP did I really just say that???
But guess what? Dr. C finally explained everything to me, start to finish. She finally explained why she would prefer to wait, but she heard my concerns, and she was concerned that Kalea is so aware of how she's different too. We love this doctor, but she really has no clue how much kids notice things in others and in themselves. She's finally understanding how self-aware Kalea is, and she agreed to make our first pre-op appointment for the first week of March! We'll have 3 of those before they book the surgery, but now the ball is really rolling.
HUGE VICTORY FOR KALEA! Small victory for mom, because this has so much more to do with Kalea. I'm so grateful that I had some help in knowing what to say and how to say it so that our doctor would get the bigger picture and start thinking less generally and more specifically in regards to our child. I am learning lately that doctors tend to generalize quite a bit, instead of treating each person as a unique case, not okay for our family. Hopefully this first victory gives me the courage I need for the rest of this months conversations.