I really need to get better at posting some events before they happen. October 7th was World Cerebral Palsy Day, so the above picture probably should have been posted in my October 4th post, not two weeks after it happened.

Stacy almost dressed James in a Cubs shirt on the 7th, but when she realized it was Cerebral Palsy Day, she put him in a CP shirt instead.

He really is a tough kid. With all the punches life has thrown at him, he just keeps going and doing the best he can. That’s all that we can ask of him. I guess the same holds true for all of us. We may not be the best at some things, but that doesn’t mean we can’t at least try, right?

Here are a few statistics about cerebral palsy according to the US Center for Disease Control:

• • Cerebral palsy (CP) is the most common motor disability in childhood.
  • Recent population-based studies from around the world report prevalence estimates of CP ranging from 1 to nearly 4 per 1,000 live births or per 1,000 children.
  • About 1 in 345 children (3 per 1,000 8-year-old children) in the United States have been identified with CP, according to 2010 estimates from CDC’s Autism and Developmental Disabilities Monitoring (ADDM) Network.
  • The prevalence of CP is higher for children born preterm or at low birthweight.
  • In some parts of the world, there is evidence that the prevalence of CP has declined, particularly for children born at moderately or very low birthweight.

Out and About

Just because James has CP doesn’t mean he’s confined to home and school. At some other point in time that might have been the case, but thanks in part to the Americans with Disabilities Act (ADA) of 1990, he is free to go and do the same things anyone else, without being discriminated against.

Last week he went out for coffee with his girlfriend. They were supposed to go for a walk after coffee, but James was having a rough day with seizures, so Stacy decided to skip the walk and bring him home to relax.

Monday was Columbus Day, James had the day off from school and I had the day off from work, so we all went out for lunch. I always wonder if James gets upset at all when we go out to eat and he is unable to enjoy any of the food that Stacy and I order. Somebody told me once that James never had the ability to eat by mouth, so he doesn’t know what he’s missing. I guess that makes sense. It wasn’t something he was once able to do and was taken away from him. Could you imagine how you would feel if you were no longer able to eat by mouth, you went out lunch with friends, and had to sit there and watch them eat these meals?

Getting Ready for Halloween

Stacy has been working hard on James’ Halloween costume. Several of her friends on Facebook have tagged her on a picture of an awesome costume that someone did for their child in a wheelchair. It looks like Superman flying with body and legs extending out behind their child’s head. I thought about sharing that picture here, but decided not to because I wasn’t able to track down the parents to ask for approval to post the pic. So, you’ll just have to imagine. Or do a search for Superman wheelchair costume. That link should work, but if it doesn’t, a simple Google search for “Superman wheelchair costume” should bring up some pictures of the costume.

Stacy was going to try to recreate that Superman costume but was having some difficulties. One of the problems she ran into was trying to figure out where to put James’ suction machine and pulse ox so that they would be accessible. She also didn’t know how we’d be able to reach the handles to push him with the legs sticking out the back several feet.

She decided to go in a different direction, so we’ll have to wait to see what she comes up with. She’s starting to doubt herself, but I know she’ll come up with something creative.

I want to take a quick moment here to say thank you to Target for including someone with a disability in your advertisements. This goes back to what I was saying above about the Americans with Disabilities Act (ADA).

This weekend we started putting up some decoration outside. Because our new garden doesn’t have any plants in it, we decided to turn it into a little graveyard. It’s not nearly as extravagant as some of the other houses in our area, but it’s something.

Remembering Jackson

October 15th was Pregnancy and Infant Loss Awareness Day, so we took a few moments to light a candle and tell Jackson that we’re thinking about him. If you don’t already know, Jackson was our first son who we lost to Trisomy 18 before he was born. That was probably the hardest thing that Stacy and I have ever gone through. We still think about him often and hope we get a chance to meet him someday.

On the Radio

I didn’t want to end this post on a sad note, so I left this for the end. Remember the “media frenzy” from the last post? Well that continued into last week when Stacy made her radio debut. A local radio show, Mighty House, invited Stacy to be on the show to talk about the bathroom renovation that we were gifted this summer. You can hear the entire segment here:

A heartfelt thank you to everyone who had a part in this bathroom renovation:

• • Oak Tree Construction Services
  • D/R Services Unlimited, Inc.
  • Phil’s Electric Company
  • M.A. Newman Inc. Plumbing
  • Schluter Systems
  • Tripp Builders
  • Valdivia and Sons Construction
  • NARI of Greater Chicagoland
  • Chicago Renovation and Development
  • Moen/Crawford Supply
  • Geberit
  • Callahan and Peters
  • Boone Creek Cabinets
  • Mr. Floor Companies
  • Evanston Lumber
  • ITW Build Clean
  • Pro Source Wholesale Flooring
  • Sherry Schultz, Crawford Supply
  • Jeanne Halko, Crawford Supply
  • Lior Bega, Sweet Home Improvements
  • Jim Ziegler, Stone, Pogrund, & Korey
  • John Oetking, A Street Builders, Inc.
  • Don Van Cura Construction