What questions should you ask?

Our friend asked us to post what is good and bad to say to parents with children with special needs. So here it goes!

With Jaxson, I am happy to tell people pretty much anything they want to know about him. Of course, that's not the same for every parent, but most of my friends say they are happy to answer questions. I would much rather have you come up and talk to me or ask me a question than sit and stare at my child.

The biggest thing I hate is when a curious child walks up to Jax and and stares, or asks "whats that," and the parent hurriedly grabs their child and pulls them away, apologizing. Children are honest, and not afraid to ask the difficult questions. It does not offend me when a child does this. I would love nothing more than to educate a child, to explain to that child what he has and why he has the tubes. Usually they are quite intrigued!

There really isn't a bad question that I can think of. I'm not even offended if people ask me what Jax life expectancy is. Of course, no one knows for sure when their time is up, but it doesn't make me angry that people are curious about that.

I don't like when people tell me they are sorry. Sorry for what? This beautiful baby boy that I wouldn't change for the world? I also don't really like when people say, "how do you do it?"

Uh, do I have any other choice? I love taking care of Jax. This is what I did for 12 hours, 3 days a week, for five years up until he was born. Not only is it spending time with my son, its doing what I love! Not everyone loves it like I do. But we can't leave our child on the street. They were given to us, and it is our job to do everything for them to keep them healthy and happy.

Little Miss, what do I say about this crazy beauty?

I have had a few people talk to me about her having DS if they also have a child with DS, or work with kids with special needs.

Other than that, no one has ever said anything. Not a thing. I'm pretty sure it's obvious she sports the extra chromosome. From her itty bitty nose, to her beautiful almond eyes. My hope is that people do know, but it just doesn't matter! They see she is a funny toddler, and she usually has people laughing or wanting to tickle that little budha belly!

Of course I would also be happy to answer any questions about her. Like what age she did things, and what she may have trouble with.

It's interesting to have two totally different perspectives. Jax doesn't just have a Down syndrome diagnosis. He also has a cerebral palsy diagnosis.

This can be a touchy subject for some people. For me, it is what it is, and I'm just happy that I found the world of blogging. It has brought me so much closer to not only Down syndrome families, but families with children with other disabilities, which I needed with a child like Jax. In the year after Jax's brain injury, I had a really hard time going to our local Down syndrome parties. I felt sorry for my poor child that would have had a much different life, if not for someone's mistake. Online I've been able to find other families with children more like Jax, and know that he's not the only one!

*Jax has his cardiology appointment tomorrow, and I'm a nervous wreck! After 6 years with a cardiology team that I didn't feel knew what they were doing, I have this horrible worry that this new cardiologist will find a bunch of stuff that is wrong or wasn't fixed right! Think happy heart thoughts tomorrow!