8 things I want you to know (cross-post)

In the past 3-plus years since Ben has been diagnosed with CP, we have learned a lot. Not only about CP, but about the world we now live in. The world of disability. And since I have your attention, I thought I'd take this opportunity to share some of it.

1. First of all, I am not super-mom. Nowhere near it. I am just like other mom's out there...except I ended up with a child with a disability. I am doing EXACTLY what you would do if it happened to you.

2. Our life is the same as yours, but different. In some ways, I don't want you to think that we are any different than you. We have the same joys and struggles that you have. Most days, we are just like you. We get up in the morning (way too early in my mind), go to work,. take the kids to preschool, get groceries, do laundry and make dinner. We watch cartoons (probably too many) and play with lego and play-doh and Thomas. We go on vacation and then have to deal with paying the credit card off later. But then again, I do want you to know that our life is different than yours. Harder. More complicated. We have appointment upon appointment. We have to think about wheelchairs and walkers. We have to schedule therapies and surgeries. It sucks. We also have to think about accessibility whenever we go somewhere new. That's probably what I hate most. Every time we go somewhere new, it's such a struggle to figure out if (or how) it'll work for Ben. Sometimes we just don't go. Sometimes we do go and end up leaving because it just won't work (and usually tears ensue). And then sometimes we go and it works wonderfully.

3. Everyone has their THING. I have to believe this. Life sucks sometimes and sometimes it feels like it only sucks for us. Then I remember a friend who lost her mom WAY too early. Or another who lost a sibling. And another who has had a miscarriage or two or three. I have friends who have actually lost a child. I now know many, many people just like us, who have a child with a disability. So yeah, I believe that we all have struggles and problems and loss. We just happened to be the ones that has a child that can't walk.

4. Don't jump to conclusions. A six-year-old in a stroller may not be able to walk. A child having a meltdown at Wal-mart may have Sensory Processing Disorder.

5. You already know that your child is not the same as the next child. Your child is unique and special. Well, it's the same for children with a disability. One child in a wheelchair is not the same as the next. One may be able to speak, the other may not. One may be cognitively-delayed, the other not. Remember that just because a child (or anyone) cannot speak, that doesn't mean that they can't hear or understand you. Treat everyone with compassion.

6. It's not OK to stare. OK. You probably already know that. But maybe you don't know that it's OK to say "Hello". Especially to a child with a disability. It's even OK to ask questions. Really. Please teach your children that those with disabilities are the same as anyone else. And are just as worthy of your time.

7. Statistics are (almost) meaningless. Especially to people dealing with a medical condition of some kind. I remember when the boys were born at 30 weeks. The statistics seem so good for 30-weekers so those on the outside assume everything will be OK. For example, 90% of premature babies turn out OK. That seems like a great number. But that means that 1 in 10 are not. 1 in 10 develop a permanent disability such as cerebral palsy, chronic lung disease, blindness or deafness (and yep....we ended up being the 1 in 10). Imagine being told that your child had a 1 in 10 chance of having one of these disabilities. Would you think that everything is OK? This applies to anyone in your life. Many (or most or all) of you will at some point have someone in your life that is diagnosed with cancer. Perhaps this person will be told that the survival rate is 90%...sounds great...at first. Remember that they have just been told that 1 in 10 people with their condition don't make it.

8. And finally, no one wants to be pitied. Please do not pity us. Have compassion for us, but please do not pity us. Our life is good. More than good. We are blessed. We have two wonderful boys, good jobs, lots of help and support, a beautiful home and really more than most. We are happy. In some ways, I feel like we have MORE than you. Does that seem strange to you? Probably. But it's true. We have learned what is really important in life. Every night when I go in to the boys' room and see them sleeping, I am full of gratitude. Because I have two healthy, thriving children. We could have lost Ben. But we didn't. Aren't we lucky?

(I struggled with whether or not to press "publish" on this post. I'm hoping it doesn't sound preachy. My intention is only to share what we've learned as parents to Ben.)

Feelin' it

So. We're on our first big family holiday together in Florida. And mostly having a wonderful time. The resort is perfect for us. The pools and beach are really nice and the boys are having a blast. They really are.

But I'm struggling just a wee bit. In our normal life, I have to say that I don't really SEE Ben's disability that much. Yes, we have twice-weekly PT sessions. Yes, we lug his walker everywhere. Yes, I have to be very particular about what shoes I buy him. But his disability just isn't that big of a deal in our regular life.

Our home is very accessible for him. And we only go places that we KNOW will work for him...meaning he can use his walker or we're comfortable with him crawling. We really don't go ANYWHERE where he can't be somewhat independent. It's just no fun. The odd time that we have to go somewhere that doesn't allow him some independence just results in frustration and tears from him...and pretty much the same for us. So we basically avoid places like that.

His disability has been a bit more evident here. It's pretty great at the beach. He's happy to just w-sit in the sand and play with his buckets and shovels. He will do this for hours on end. Yes, I wish he could run in and out of the water like Daniel does, but he's having such a great time, that I don't really think about it much.

The pools though are a different story. At first I thought they were going to be great for him. The main pool has a side where you can walk in. And there is also a kiddie pool that is walk-in and has lots of sprinkler-type stuff. BUT. Yes, but. The bottom of these pools is very rough. You wouldn't really notice it but it is. It's perfect for making the pool non-slip...but far from perfect for a little boy who needs to crawl around on his hands and knees. He played in those pools the first day for a couple of hours. And ended up with very skinned knees and feet. It's 3 days later and they are still looking pretty rough. So that kinda sucks.

Plus, there's this really cute family here that we keep running into. They have 4-year-old boy-girl twins. Boy are they cute. But for some reason they are just serving as a reminder of all that we (and Ben) don't have and can't do. They are so cute running around and playing together.

So yeah. I've been feelin' the CP thing this week. And that sucks. I don't like feelin' it. I like it when all I see is what Ben CAN do, instead of what he CAN'T.

We are having a good time though. That's for sure. It's just that I've been feelin' it.