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, March 12, 2010

I wish

I wish things were simple. I wish I didn't worry. I wish I didn't spend half my time online looking up things Nick might have. I wish he was fine. I wish I could do something. I wish I didn't think of things Nickolas couldn't do. I wish I didn't worry about his shunt, his neck, his peeing, his pooping, his feet, his development. I wish, I wish, I wish!!! (feet stamping)

Ok now that that is out of my system. I'm thankful for my Nickolas, I'm thankful he is such a happy baby. I'm thankful he smiles and kicks and ha ha's and grabs at me. I'm thankful he is easy going. I am thankful he pees (especially when he pees on me). I'm thankful when he kicks at me. I'm thankful there is an internet I can learn so much from, and wonderful forums with supportive people. I'm thankful I have such a wonderful family that is so supportive. I'm thankful Nickolas is here with me. I'm thankful Katheryn loves him so much, that we all love him so much. I'm thankful, thankful, thankful.

So I balance between wishing for things I can't change and thankful for what I have. Apparently Nickolas has made me philosophical. I can wish for things to be perfect all I want, but perfect is what I make it. Sometimes I think life is so perfect, we are right where we are supposed to be. Other times I'm upset things didn't work out as planned, that I can't have 'normal' worries my parent had, that I'm not carefree. Luckily I'm in my 'happy place' more often then not.

What brought this all on? I've had a couple of worries this past couple weeks.

I've been getting larger volumes when I've been cathing Nick, so I need to cath more often. We see urology next week. I'm also worried about his feet, he has extra padding on his heels. Which ??? could be something called row-bottom feet (this is me looking it up online and seeing it is a foot disformity associated with S1 level of spina bifida). It means that his heal bone is sticking out. To fix it, could mean casting and surgery. Crap! It just caught me by surprise. We see orthopedics next friday and I will ask about his feet and see what they think. Maybe its nothing and I'm just worriing myself about nothing.
Nickolas is also not holding his head up as much as I'd like. So we've been working on tummy time (which he hates). He does hold his head up better over the last week, but tilted. He also tilts to one side (R side) in his swing which could be because he doesn't have the muscles to stay straight. I think because he moves so well I don't want there to be any problems, and I'm fooling myself. I just want things to be the best they could be. We've also been working on playing with his feet, bringing them up so he can see them and touch them. He has his big belly in the way, but they reach. He likes doing this and lifts his hips and bum up.

I think the only thing I do have control over is this Spirit wheel walk ride I've been involved in. It gives me something to do to help Nickolas. It lets me stand up and scream - this is my son, he has spina bifida and I'm proud to be his mother!

1 comment:

  1. I'm right there with you! Such a pendulum swinging from being thankful for what you have to wishing you had something else. I've never heard about the foot thing! I hope it ends up being nothing!

    And we finally joined the SBHAO. I was avoiding because joining = admitting, which was getting silly at this point. So, we're in the club. Officially. :)

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