A Journey with Love and Laughter

Read about our family as we journey through life as a family, with siblings, school and spina bifida, and lots of fun and laughter along the way!

Friday, April 16, 2010


Sometimes I forget about the spina bifida. When he's lying down and kicking those beautiful feet, in his crib, or when I'm changing him. What is more wonderful than that (even better is when he tries to pee on me!). We play, move his feet, kick his legs and work on rolling side to side. Then I try standing him up - what's wrong with that? Nothing except he can't feel the bottom of his feet. He doesn't know they are touching the ground. He doesn't even try to straighten his legs. Up until then I can sometimes pretend that spina bifida at S1 is no big deal.

I know he will learn, everyone says he should be able to walk, he does have strength in his legs and kicks things. I just wish he would stand up on my lap. And he will. Not maybe, he WILL. He can feel some things on his feet, he just doesn't recognize what it is. This is something that can be taught. I think sometimes walking is over-rated. Like that is the first question that people ask, will he walk? There are things that are more important than walking.

Nick doesn't know any different, he thinks he is perfect - and you know what - I think he is perfect too. Who can look at this and not see what a perfect baby he is. If he's not able to walk, but is still a happy child (and beyond), that is all I want.

I have people say how healthy he looks. Of course he is healthy. Yes he was born with spina bifida, and has a shunt, oh yeah and the bladder thing, but he is healthy. Oh this is what they talk about in nursing school that health is relative. I get asked how he is doing and I say great (he is doing great), just look at him!

Just look at that cute chubby belly! I just want to tickle it! I have to say that I love his little belly (not so little). Katheryn was not a chubby baby (there is 19 months and 3 lbs between them right now). I liked having a tiny little girl, now I'm enjoying my big porker boy. Some stats - Nickolas is 19 lbs, Katheryn is 22 lbs.

When you look at those stats - what child would you be worried about!

1 comment:

  1. I completely agree. He's GORGEOUS!! The very picture of health. It's funny how I feel like I'm always saying: "I hardly think about the SB. There's his shunt, and the cath'ing, and his medicine, and his PT... but other than that I never think of it!" And people look at me like "Dude. That's a LOT" but it really isn't and that stuff is soooo not a big deal 95% of the time.

    LOL, I'm so in love with that picture of his chubby belly. I want to reach through and tickle it!