Monday, September 21, 2009

Koen amazes me

Everyone has told me all along that Koen would be sensitive towards Payton and wouldn't you know, it's all ready becoming apparent that he wants to help her. We were getting ready to take Payton's blood pressure and she got anxious about it (it's rare anymore that she gets anxious over it, but every now and then it sneaks up again). Koen ran over to her side and grabbed her hand to hold it while daddy took her blood pressure. She still likes to have someone hold her hand when we take it and Koen has obviously seen us do this. Sure enough, he stepped in quickly to help her out. It absolutely melted my heart.

The other time I noticed it was when she was listening to a lullaby on Bob's iPhone. We always laugh because Payton seems to have a love/hate relationship with a lot of different noises. The noises she hates are the noises she is absolutely obsessed with. Train whistles, lullabies (they make her sad), the air compressor, Koen's nebulizer. She hates these things, but yet insists on find them and listening to them. Once the lullaby came on, she started crying and there goes Koen, running to her side and grabbing her hand to hold it. Beautiful.

Sunday morning Koen decided to go in and play on my treadmill (which he is normally unable to turn on, but unfortunately I did not take the key out of it and he turned it on high). Needless to say his feet flipped out from underneath him and he was pushed against the wall getting burned by the treadmill. He burned the back of his head (not bad, but enough to burn some hair out) and then got quite the burn on his arm. The doc gave us some medicine to put on it along with some bandages and wrap and he's doing really well with it. It sure has left a mark with Payton - everyone has heard about her brother getting burned and I'm sure she's talking about it all day at school. Even last night in the bathtub, Koen did great getting it wet. I just knew it would burn so bad when he got it in the water, but that little guy didn't cry at all. Man, I love that little guy.

Back to Payton.....I was disappointed yesterday at church when I heard some little boys making fun of Payton. I knew she would eventually get made fun of, but I wasn't really prepared for it at this age. The little boy sitting next to Payton laughed and told the boy next to her that Payton couldn't write. Ofcourse they started laughing and making fun of her and Payton really doesn't 'get' that they are laughing at her. So, she joins in the laughter. (and I might add - her laughter is full of so much joy, I love it). However, while she was laughing and clueless that the laughter was at her expense, my heart was breaking. I know all kids get made fun of but it just feels different because she doesn't 'get' it. I'm not ready for this yet. We notice kids staring at her more (I will be the first to admit that she doesn't understand how to play with the kids and does have some quirky behavior......but I so wish they wouldn't stare and give her weird looks).
Whew - we are so not ready for this.

*************Just got a call from the school nurse. Payton's got a headache, blood pressure is 130/80. Why does this instantly make me tired and sad? I so want her to feel good.

Sunday, September 6, 2009


You know, we've been at this for nearly six years with Payton, and Bob and I still feel absolutely lost sometimes. The doc increased the most recent medicine again and we think we are seeing some improvement. We do have to take her in for blood work this week some time....but other than that, I am hopefuly this week will be better for her. I can't really think of the last time Payton has felt at her best. Her blood pressure has been on a wild ride lately and it's taken her father and I with it. It's so emotional when your child doesn't feel well and there's not a darn thing you can do about it.

We've been venturing out to ballgames, a place called Kangaroo Gym (where kids can bounce like crazy), etc. and Bob and I are becoming more and more fearful Payton is not going to 'outgrow' the emotions that go along with taking her places that may be more loud or active than what she is used to. She really does want to go to these places, but once there for a bit she really does just lose it and spends a lot of her time crying (or screaming and crying, I should say). At kangaroo gym she discovered the bathroom sink and spent a good thirty minutes continually washing her hands. It was irritating to me - after all - there were tons of kids there having a ball and she should've been doing the same thing. But, again, I've got to remind myself that what makes the other kids happy won't necessarily make her happy.

And, ofcourse, the greatest part of it all was that Payton crashed her first birthday party. At the gym, there was a child having a birthday party and Payton managed to make herself well known to those attending. She talked to all of them and then proceeded to tell them she was very hungry - wouldn't you know it - she ended up with a piece of spiderman cake. A tad embarassing for me, but nothing compared to the embarassment I received at the pizza place afterwards where she proceeded to ask strangers for money because she wanted to play the arcade games at the front of the restaurant. And, yes, one gentleman obliged :) On the way home Bob and I were talking about how frightening it is that Payton sees everyone just the same. No one is a stranger. So scary! She will give anyone a kiss, give anyone a hug, and talk everyone's leg off. While I'm sure she may touch several people's hearts, it scares us to death.

So, those of you with older kiddos......should her emotions be better by now at age six? She is getting stronger and stronger. It is so hard to carry out a screaming, kicking six year old....and I really get tired of the stares. I know so many of them think I need to get my child under control but they have no idea how there is just no winning with her. She just doesn't 'get it'. And Koen-he's the polar opposite. Two years old and he knows how to behave. I'm not saying we have him completely figured out - I know kids change as the grow - but he understands things. Bob and I really are afraid that when Payton is thirty years old we're still going to struggle with her understanding things and not throwing a terrible fit. (I've read stories like that on the listserve and I really don't want it to be like that for Payton). It's awful for Payton and it's exhausting emotionally and physically for Bob and I.

We took Payton to the dentist last week and she'll need to have surgery (which we figured before going in there). With her medical issues they'll have to do it in the OR, which is great with us, it makes us feel better that way. Because she's not in any pain, she doesn't have to have it right away - so we're happy about that. We see the cardiologist in a few months and with the way her blood pressure has been, I'm anxious to go to that one. I know I may not ever get any real answers, but it sure would be nice to :)