Our journey through life with hemiplegic cerebral palsy and infantile spasms

Wednesday, July 11, 2012

So far so good

Still no seizure action. Woo hoo! And now that we are tapering off the prednisone, Karsen is so much more happy! He's been sleeping a lot better at night. Maybe I can actually start getting out of bed before him so I can start training for my marathon. :-/ We'll see. Mornings and I don't get along but since Karsen has slept through the night 3 out of 4 nights I feel much better and up to getting up easier than usual.
Karsen's birthday is 12 days away! I realized, the other day, when someone asked me how old Karsen was I told them 10 months. Whoops! I can't believe it's almost a year! I have such mixed emotions about it. On one hand I feel so blessed he is alive and doing relatively well. But the other hand I feel like we got robbed of some many months because of all the medical stuff. I wish we could back up just a little bit. I think I felt the same way with Karter when he turned one too, but we didn't have a single hiccup his first year of life, in fact we still haven't. The most tragic thing that happened to Karter was a wasp sting. Such small potatoes compared to Karsen.
I found myself quite irritated at a stranger the other day. I realize she was trying to make small talk but it was still aggravating Karsen was sitting up, nice and straight playing with his friend who is just a little over a month older than him. Of course his friend is crawling all over the place and starting to walk, for once I wasn't sad that Karsen couldn't do any of those yet, I was just so proud he was sitting so strong. This lady comes over and asks how old Karsen is and if he always just sits and plays like that not moving all over the place. I told her Karsen wasn't a mover yet. He had his thumb splint on, his new one that is pretty bulky, I would have thought she would have seen that and not said anymore. Instead, she tells me I'm lucky. WHAT?! Luck?! are you out of your mind? I always hate when people would say that, even when I had Karter. Why would not want your child to thrive and learn to do new things? Lazy people just don't want to chase their kids. But this particular conversation made me flat out mad. Again, I know she was just making small talk but sometimes I want to put a shirt on Karsen that says please don't ask today, my mom is sensitive. Well... that's the truth isn't it? lol My husband would have to agree. I need to start coming up with responses that are the polite way of saying "I don't really want to talk to you". Any suggestions? ;-) Well, enough venting for now. I'll keep you all posted on how Karsen's appointment goes today.

1 comment:

  1. A couple of my kids have "issues" that can be tricky to address in public. So I finally decided that when I don't talk about it openly, when I hope people don't notice or don't say something, I am sort of hiding out and I am letting them have my power. My energy is going toward thinking of a response and how much to share etc. So I decided early on with Molly's dyslexia that we would be proactive. We would answer questions, we would not get found out, but instead we would share our lives with others and invite them in to how learning was/is for her. I will say that I had no clue what I was doing, and it must have been an idea inspired by God, but it ended up being one of the best things I have ever done as a parent. It taught her early on to be open, to be forthright, to share her life, and because of her honesty and because she was so ok with who she was, it never occurred to anyone to think differently. I don't think she has any stories of being teased in school. Rather kids were volunteering to help her constantly. I know that learning disabilities is very different than a physical disability, not as visible....but Molly couldn't read until she was 12, almost 13. A total non-reader. Can you imagine, being in a literate society and unable to read? Unable to spell her own last name? Tell her address, remember the abc's in order? She was almost a teenager and couldn't do what many 4 year olds are able to do.
    Later as we entered into everything with Hannah, again that thinking of walking in honesty, we are who we are, served me well. People have issues. That is just a basic fact of life. We can hide in our issues or we can fearlessly share them and know that we are ok with what life has handed us. We are doing the best we can. People's responses are their own. We are not responsible for if they understand or get us or not. We are only responsible to walk in the light as much as we are able and be who we are. Karsen is a beautiful little creation. No mistakes were made. The best gift you can give him is to be free in exactly who he is. Love you Jaimie and your precious family.

    ReplyDelete