Because of the sidewalk conditions, Grant and I decided to take Tyler trick or treating at a really nice mall about 35 minutes from us.  It was the best decision I have ever made about what to do about the problem of Halloween.  I can’t walk from house to house, so I used to drive alongside Grant and Tyler while they trick or treated.  Going to the mall, we got a wheelchair, and I was able to take part in everything!  I highly recommend this option if you are unable to walk any kind of distance.

If you’ve been keeping up with us, your memory is correct.  This is the THIRD year in a row that Tyler has gone as Spider-Man for Halloween!

Working out for Tyler to get into his Spider-Man costume has obviously paid off. Check out those muscles!

Weary of trick or treating, Tyler blew off some steam at a cute little indoor play park, free of charge that he is almost too big for.

I had to bribe Tyler that if he went to the play park he would have to take a picture with Mommy. Whatever it takes!

Even Superheroes Have to Eat

Luckily Tyler is a reasonable Trick or Treater and he didn’t want to stay at the mall more than a couple of hours. He got plenty of candy anyway!

Grant and Tyler examining the "loot"!

You can’t miss what you’ve never experienced, so Tyler really didn’t care that he missed the big Halloween parade at school.  He was happy with all the candy he got.  Now if I can only stay away from eating it…

The post Tuesdays With Tyler: Halloween! first appeared on Mama Sick.

I’m talking about when a chronically ill parent decides they are going to give it their all, usually to do something stupid if not impossibly beyond their body’s capabilities, for their child.

On Friday, Grant and I took Tyler into New York City for the first time, to the Museum of Natural History.  I had not been to the city in five years, right after Tyler was born, even though New York is about an hour away from me.

On Saturday I remembered why that was, as every system in my body, gastrointestinal, joints, muscles, brain, etc. screamed in agony and protest.

But first, let me tell you how I got that way.

On Thursday we were supposed to go to my cousin’s house for a Jewish New Year celebration.  It was early for the kids, the dinner was at 3:30, which is good for the kids, but is right in the middle of my nap time.  I am at the point where if I do not take a nap, I cannot make it through the day.  I mean, I will involuntarily fall asleep at some point or get a major headache or be sick to my stomach if I do not lay down.

I couldn’t picture getting through the day just continuously drinking coffee so I laid down for an hour and a half, but when that alarm rang there was just no way I was getting Tyler and I ready and sitting through a usually really good time, you know?  I called my cousin, I can barely remember the conversation, and passed on our regrets.  He is a great guy and understands my last minute cancellations.

And then my feet and hands began to swell more than they already were and the nodules made themselves known.  I have this topical cream that I rub into my joints and Grant was rubbing my feet.

And then came Friday.  New York City Day, Tyler’s First Time in New York, Going to the Museum of Natural History.  Grant was looking forward to it even more than Tyler was.  To disappoint them and say I could not go was not even in my realm of thinking.  My feet may have had lumps in them, but I was going.  I find I can walk more when I bandage my knees. We were going to try to minimize my walking, by taking a cab to the museum and getting a wheelchair for me.

But it was still more walking than I do in a week; walking from the parking deck to our train station, walking through one of the largest train stations in the world to get to a cab, and walking up to the entrance of the museum where I could finally get a wheelchair.

Yes, there was a damn good reason why I had not been to New York in five years.  And by the way?  It was like I had never been away, New York will never change.  I’ve either lived in one of the boroughs or been an hour away from my New York my whole life.  I have been everywhere I need to go, most of the museums, Greenwich Village, SoHo, a few Broadway plays, seen all the tourists spots when I was little or when I was older with visiting friends.  As far as I am concerned, from where I painfully sit now, I never need to go back there again.  I still think it is the greatest city in the world, a must see in your lifetime, but I have pretty much done New York and the next time there is something in there I want to see, I will just buy a book on it and become an armchair or bed traveler.

So even though I was in a wheelchair, I can walk.  But just because one can does not mean one should.  

Grant was particularly looking forward to a the newly refurbished exhibit on Early Man, but particularly the tools and drawings of early man.  I had forgotten what being in a museum with Grant is like.  When he comes for something in particular, you could just leave him there for the next three hours and see the museum by yourself.  Tyler was whining and rightly so as most people would find this extremely odd behavior, especially with a five-year-old in tow. I had no choice but to show Tyler other parts of the Early Man exhibit on foot and then on to Gems and Minerals as Grant was still riveted to ONE PART OF ONE EXHIBIT.  I had to take Tyler to the bathroom on foot.

Grant was very good about pushing me through the museum, I never had to walk anywhere far, but the little walks added up.  I walked through the special exhibit of “The Largest Dinosaur Ever Discovered” and through the gift shop.  The last thing on our “to see” list was the special frog exhibit. There were strollers parked outside the entrance to the exhibit and we asked if we could take a wheelchair in.  The woman taking our tickets asked me, “Can you walk?”, which I thought was kind of a strange way to phrase things, and said that it was awkward having the wheelchair in the exhibit.

So although the exhibit was small by normal people’s standards, I walked the whole frog exhibit.  I saw the most amazing frogs ever, but again, next time I will just buy a book.  I was hurting so much. Walking with nodules on the soles of your feet is like walking on rocks inside of your feet.

And then Grant wheeled me to the exit where I had to do the same amount of walking I had to do to get there in the first place.

Yesterday I just got sicker and sicker as the day wore on.  I spent most of the day laying down, trying to sleep through the pain and nausea.  I was completely useless.  Gone went my plans for the day.  No karate for Tyler, no food shopping, no buying a birthday gift for a kid whose birthday party is today.  I was too sick to blog, thus the title of this post.

I told Grant that Tyler was of an age where he could handle taking him to New York by himself and that I would not be going in the future.

It is a sad life but honestly I feel better and feel almost good and well, if I stay at home and do nothing.  When my mother comes and does all the cooking and dishes and cleaning, I actually feel like I am on the mend.

I am at that point where were it not for Tyler and Grant I would choose to be completely housebound.  I’ve got the internet, I’ve got a television and an iPhone. What else do I need?

Who’s with me?

If I never had had a child, and had someone do my hair and makeup every day, I would look just like her.

The post The Day After the Day After first appeared on Mama Sick.

Anyway, Tracey from Just Another Mommy Blog (love that title!) had this to say:

“I’m glad you have this space… I just want to say that not all of us are looking with morbid curiosity or pity or anything bad. Some of us are able to look at a person in a wheelchair and not really “see” the disability.”

Personally, Tracey, I enjoy pity but apparently most of us disabled/chronics do not!

I started to write her back personally but realized what I started to write could be a blog in itself, so, thank you for that, Tracey!

I told Tracey that if she could look at someone like that, not see the disability, that she was pretty amazing.  (And I mean that in a sincere way!)

The thing is…even I always can’t, and I am often in a wheelchair or scooter of my own!

So, why do we look?

I don’t know all the answers and I guess I can really only speak for myself.

When I was well, I don’t know, you see a disabled adult or child and your eyes just GO THAT WAY, and I don’t know why I am so drawn to it.  But it does not mean that just because I looked, that I was thinking that person was a freak; most always I just feel sad and wonder what is wrong with that person.  I think that we who are in scooters or wheelchair, carry canes, etc. need to keep that in mind, that healthy people mean us no ill will, curiosity just gets the better of them.

Now that I am disabled ,I look at people using assistances and I just really want to know what’s wrong with them!  Maybe they have Lupus like me, or Fibro, or Chronic Fatigue!  I want to say “Me too!”  Sometimes I actually have and it’s been a good thing and I have found someone with a related illness!  I don’t know many disabled people in real life so it is sometimes nice to meet a fellow chronic!

How do I feel when I am stared at?  Like, I said, I remember how I stared or still do and why and I do not let it bother me.  Except when startled moms look at me riding a scooter with horror and quickly get their kids out of my way, fearing that I might run them down. (Which is probably wise, as I do find these scooters can be hard to drive sometimes and have crashed into displays, but never people.)  So I do feel bad when I scare moms and kids.

To those disabled who really still don’t want people to stare at them, I seriously tell them, don’t look at them! I usually take this approach, then I have no idea if people are staring at me or not!  This “don’t make eye contact approach” particularly comes in handy when I am putting up my handicapped placard around my rearview mirror, and what people don’t know is this perfectly looking healthy person is then going to get on the nearest scooter she can find!

If I have done anything in this post, I hope it makes healthy people realize that some sick people know you can’t help it and are even okay with it.  And I hope that those readers who are disabled have been made aware that people who stare at you are not necessarily awful, prejudiced people.

Why do you stare?  Or can you control it?  If you are disabled, does it really upset you?  Any “war” stories?

The post You Know You Want to Look! first appeared on Mama Sick.