Carols by Daylight

All week we have been looking forward to going to the Carols by Candlelight in the City Park. We didn't get to go last year as the weather wasn't very good so we were glad that it wasn't raining today. The boys were really excited to go. We got there quite early to get a good spot on the hill with everyone from church, up near the canon.



Noah slept most of the afternoon and just as we were getting to City Park he started yelling. I had a feeling to bring some morphine with me in case he was cranky, and we gave it to him but he still kept on yelling and had a couple of big seizures not long after we arrived. He would settle down for a bit, and then would start yelling and stiffening up.

The boys were really excited to be there and loved running around and playing before it started.

Kobe was very social as usual, and had fun chatting to everyone.


We had to keep our eyes on him as he kept taking off all the time. Lucky we have Jay around to help chase him!


Kobe loved it when the music started up. He kept bopping away to the music and clapping hands after every song.


Noah wasn't too bad, but kept crying out. I lasted about an hour (after the music began) and decided it really wasn't much fun with Noah being cranky and I would rather deal with him at home. I hate being out in public when he is yelling - it's very stressful for me and I also think that it wouldn't be nice for anyone else to be around either. Aaron drove Noah, Kobe and I home and then went back to spend some time with the boys. I didn't get to see the candles lit up so it was more Carols by Daylight for us.

I was disappointed as it's always a fun family night where we can be together and hang out with good friends. I hate that things are getting harder as Noah gets older - just normal things that we used to take for granted - like going out to the carols, or just going to the park for an hour or two. You just never know what mood he will be in or whether he is going to need suctioning while we are out in public.

The last couple of years we have had to make a lot of decisions where I don't like either option - either we go out together as a family and hope for the best - hoping that Noah will be in a good mood and be well, or we leave Noah at home with one of his carers and do something with the other boys, while he is home. I don't like either option. I feel sad when we don't take Noah with us, but then I feel sad for the other boys when Noah is cranky and we can't enjoy the time together anyway.

When I got home Noah was yelling a lot. I was glad I came home and could deal with him at home and could tell it was his bowels that were bothering him.

After a bowel clean out (I'll save you the details!) he is feeling a LOT happier and is very relaxed and calm again. I really should've done it before we left, but he seemed okay at the time. Hopefully next year we will all get to go again, and be able to enjoy a nice happy tonight together.