The hardest part of being Alex's mom is her being non verbal. Is she tired? Is she hungry? Is she bored? I can guess - and I can try to read her body language, but I don't always get it right. And sometimes it truly can be heart breaking. Two incidents the past two weeks have really driven home how hard and frustrating, for both of us, it is.
A few weeks ago she started her new seizure medicine. About a week after, she started itching her head. I checked the back of her head to see if maybe she had a bug bite or dry skin - checked the paperwork that came with the medicine to see if there were any side effects and there was nothing about skin irritants. She kept itching. I checked her several times for any signs of an irritant. My mom and I had a conversation about it and she looked up the medicine in her medical book and there was nothing about skin irritants. Last Saturday I was trying to feed her and she was MANIC. She was ripping her hair out and laughing uncontrollably. She normally gets a little crazy when it's time to eat because she gets so excited, but this was out of control. And honestly, I was FRUSTRATED. She was flinging food every where, laughing so hard so she was choking on her food and ripping tons of her hair out. Part of me felt like she was doing it on purpose, because the more I told her no, the more she kept doing it - and staring me in the eye like she knew it was making me upset. I was beyond frustrated with her, threw her food in the sink and gave her a tube feeding. I hate getting frustrated with her because I know she can't help it and it puts me in a bad mood. On Monday her nurse Tabitha was getting her dressed for the day and called me up to her room. Turns out Alex had LICE. How does the child who barely has interactions with other kids get LICE??????? Never in my wildest imagination would I have thought she had lice. The only places she had been was the pool and therapy so we can only assume she got it at therapy. So all the time she was pulling at her hair and trying to get my attention, she was trying to TELL me what was wrong. Heartbreaking. I felt SO terrible.
Fast forward to this week. We are on vacation and while she's eating, she hasn't really been eating all that well. The night before last she got up at 2 AM and was MANIC again. When she's manic she yells so loud (a happy yell) and keeps laughing and laughing. She never went back to sleep - just kept on being manic. Later on in the afternoon Tabitha was putting her in her chair and we saw a bunch of blood. At first we had no idea where it was coming from - it was on her mouth, her hands, her shirt - then we realized she had a HUGE molar erupting in the back of her mouth. Again, she was trying to tell us something wasn't right and we missed all the signs.
It's the most helpless feeling not being able to help her or know when she's in pain. She doesn't act like a typical child when she's in pain - she's almost always happy - so is it a happy happy, or is she being manic because she's trying to alert us to something?
So next time your 'typical' child is constantly chattering in your ear, or doing the "mom, mom, mom" chant when you're in the middle of something, or on the phone - just be very thankful that they can be articulate, because trust me, the alternative stinks!
