Sure, Maybe!

The Holidays are here. That means parties, activities, and gatherings of all types. We do more in the last six weeks of the year than we do in six months. What do you do when you cannot get it all done? Just say no, and sit home with a movie and a fire in the fireplace. (Oh, wait, those are not allowed here in Nor Cal right now, we have to wait for the rain). There are worse things.

In our case, getting it all done includes all the holiday hustle and bustle that everyone else has. But we have additional considerations and responsibilities before we can take part in any social activity.

If it is an adult event, and kids are not invited, our issues are like those of someone with small children needing a sitter, but a bit more complicated. We need to get a nurse. Lately this has not been a problem and our fingers remain crossed for the holidays. In addition, frequently we have to hire an assistant for the nurse, someone who can lift Maggie and help with the care. This is more of a wild card. If we were in an age group where our friends had small children, this would not be that big of a deal. But we’re not. Most of our friends have grown children and haven’t had to consider this for a long long time. In fact, they’ve never had to consider the added complexities.

Sometimes folks are hurt when we cannot join in a given activity. It is often difficult for people to understand that one or both of us cannot make a certain outing. Often one of us will go alone, something we are very comfortable doing. (It’s either that or no one ever goes out.) Though we are comfortable doing it, it does not make either of us happy.

If it’s something kids are invited to there are even more things to consider:
1) Is Maggie included? I mean really included? Let’s face it; she freaks many people out. I do not want to take her places where she’s not welcome.
2) If so, can she physically get into the place – is there access? Public places are accessible but private homes are not. If there is access, is it meaningful. Just because you can get a wheelchair into a place doesn’t mean you can maneuver once inside. Will we be off in a corner to keep out of the way? No thanks.
3) What about the activity itself? Can Maggie take part, even as an observer, without getting stressed out? Movies are out because of her visual impairment. She cannot see or cannot process the moving images and the volume and the dark would freak her out.
4) Is it too cold for her? She gets sick easily.
5) Is it too crowded? That is just stressful for both of us. In addition to the maneuverability issue, there is practicality. Does Maggie really want to stare at everyone’s butt? Probably not.
6) Will she have fun? If yes, then let’s go and we will figure out 1-5 later.
7) Is she healthy enough? It’s December, everyone is sick. Winter’s are the hardest time of year for her (and everyone) health wise, But if Maggie gets sick it often means the hospital, no a day or two in bed. If she’s not up to it, then 1-6 are immaterial.

So please understand. We are operating in a world with different rules. We are not dissing you. We want to be able to do what we want when we want to do it. However, we do not enjoy that privilege.

And here is the secret,

That’s ok.

Therefore, if we are invited to anything, our answer is “Sure...Maybe!” What that means is: If
all of the above pieces fall neatly into place, we would love to come. However, there is good chance they won’t.

And then we stay home with a movie and a fire in the fireplace.

So it’s all good.