Tuesday, May 24, 2011

Licking Our Way Through Disney World

Back when we thought that my mom was only going to need surgery and chemo, we decided that we would take a family vacation and booked a trip to Disney World. If you are a Star Wars geek, you may be aware that Hollywood Studios starts it's Star Wars weekends in May. Which explains why we have spent the past two family vacations at Disney in May. This year, Andy wanted to be there for the reopening of Star Tours, so we had to be there on the 20th. Knowing how important this was to him, and also the fact that I really needed a vacation, I went along with the Disney plans.

I didn't say much about it before we left because I was feeling a bit guilty about going. As I said, we decided to go when we thought my mom wouldn't need chemo. As it turned out, her second round of chemo was scheduled for the week we would be in Florida. How could I go on a fun vacation while my mom was under going chemo?

Fortunately, my sister was free and she came to stay with my mom while we were gone. And I confess, I'm very happy about that. First, it was nice for them to spend time together. Second, because I really needed a vacation. Bad.

And, it was just the vacation I needed. We had perfect weather, our flights were great, everything worked out really well...

...considering we were traveling with a 5 year old.

For the most part, Michael was very good. He really enjoyed himself this time, and begged to stay longer when it was time to leave. However, we may have made a bad judgment call on the first day that bit us on the butt for the next two days.

Michael woke up at 6:00 am on Sunday when we were leaving. Our flight was in the afternoon, and despite my optimism, he did not nap on the plane. We got to our Cabin at the Fort Wilderness resort at 7:00 pm. So, what's the logical thing to do? Put him to bed. What did we actually do? We went to the Magic Kingdom. On the plus side, he got to Ride the Buzz Lightyear ride 7 times in a row, which was awesome. On the down side, we kept him up until midnight. Yes, 18 hours straight.

5 year olds don't do well when they don't get enough sleep. Especially stubborn and contrary 5 year olds. We spent the next two days fighting him to get onto every ride, and then fighting him to get off of every ride. It was a bit stressful, but he settled down on Wednesday when we had our best day.

One of the things Andy really wanted was to get Michael into the Jedi training show. Thanks to some tips from our neighbor, be knew just what to do and managed to get him signed up for the 10:50 show.

Guess what the kids in the Jedi Training show get to do.


They get to fight Darth Vader! Andy, um, I mean Michael was in 7th heaven.


We have 300 pictures from the show and video as well. Don't worry, I'm not going to post the 20 minute clip and guilt you into watching it. Just know that this made a certain daddy, I mean child very happy.


So, he's a somewhat sloppy Jedi. What are you going to do about it?

After the show, we jumped right over to the Indiana Jones stunt show. Michael LOVED it. I'm not sure if Andy has realized it yet, but all of our attempts at making Michael a Star Wars geek have failed, but my backup plan of Indiana Jones fan seems to be working very well. After the show, we bought him an Indian Jones kit with the hat, whip, sword, gun, and a bag of gems. Best purchase ever. He played with them every single day. He even had me calling him "Dr. Jones" at times.

Really, it's not surprising that my dinosaur obsessed child would connect better with an adventuresome archeologist than a Jedi Knight.

After the show, we walked by Star Tours and discovered that they were doing test runs. We jumped in line and got to ride the new ride before it was even premiered. It was awesome. It's now in 3-D and there are multiple scenarios, so each time we went on the ride was different. Even the line leading up to the ride was surrounded by fun and entertaining stuff. it was awesome.

Since we were already going crazy that day, I decided to give in and let Michael get his face painted. I've been against this for a while because I'm a bit of a chemical-phobe (who wears make-up, go figure) but what's one afternoon of face paint?

Guess who he picked?

Darth Maul! Maybe we haven't failed on the Star Wars front after all!


Maybe it's because we have beaten the topic to death with him?


Nothing like a little overkill!

Overall, the trip was wonderful. The weather was great, we got on tons of rides, and Michael was even good standing in all of the lines.

The one amazing thing is that he didn't get sick while we were there. Every time we were stuck in line, Michael ended up with his face pressed up against the railings licking everything. EVERYTHING people. He licked everything. It was disgusting and nothing we did could discourage him from it. The kid just really wanted to taste Disney World.


Wednesday, May 11, 2011

If You Can!

Last year I ran two races. The first was a local 5K in the park where I do most of my running. It was a lot of fun, and Andy and I just signed up to run it "together" this year. I put "together" in quotes because he's going to have to slow himself down a lot if he wants to keep pace with me. The second race I ran last year was Warrior Dash with Laura and Maria. We are signed up again for Warrior Dash Boston this Summer.

There's one crucial element missing from Andy and I running the 5K in the park. MUD! We decided that was not acceptable, so we did some searching to find a good mud run for us to do together. After looking at locations, and causes, we picked the Philadelphia Mud Run MS. It's a 10k (YIKES!) mud run that I suspect will make Warrior Dash seem like a walk in the park. I looking forward to getting muddy with my hubby!

We signed up for it so long ago, and so much has happened since than, that I didn't realize how soon it it. We'll be running it one month from today on June 11th. (Again, YIKES!)

The thing I like about this run, aside from the fact that Andy and I are going to get filthy together is that it's also for a good cause. The proceeds from the race go to the National Multiple Sclerosis Society, and I'm very happy to be supporting their efforts. As they state on their website, "The Society helps people affected by MS by funding cutting-edge research, driving change through advocacy, facilitating professional education, and providing programs and services that help people with MS and their families move their lives forward."

And here's the great thing! If you want, you can donate to our team to help advance the goals of the MS Society. So, if you have a few bucks to spare, click here and help us out. And if you don't, you'll still get to enjoy the thought of the two of us slogging through the mud together.

Tuesday, May 10, 2011

The Silver Lining

Over ten years ago, my mom started to notice that her eyes were getting very dry and scratchy. Then, she started having trouble with an extremely dry mouth. Even her nose started to become uncomfortably dry. Based on her symptoms, her nurse practitioner suspected Sjogrens syndrome and sent her to a rheumatologist to confirm the diagnosis. Sure enough, the NP was correct and cut my mom's time to diagnosis from an average of 7 years to 1.

Sjogrens is an autoimmune disorder where her white blood cells attach the moisture producing glands in her body. While a dry mouth and eyes sound uncomfortable, it's much worse than most people expect. My mom's eyes are so dry that contact lenses actually fall off of her eyes. Her mouth is so dry that it creates dental problems. Additionally, without any moisture in her mouth or nose, she has almost no sense of smell or taste. The only foods she really enjoys anymore are chocolate and very moist foods like soup and foods with sauces.

When I learned that my mom would be undergoing chemo, I knew that it would reduce her white blood cell count. It made me wonder if maybe she'd see some relief from her Sjogrens. As she started to improve from her first round of chemo, I noticed her commenting about how hungry she was and how good food tastes. In fact, just about every time I talked to her, she was making some kind of comment about food. Finally, over the weekend she commented that food tastes so good that she's going to gain 500 pounds while doing chemo.

Not something you hear often from patients undergoing chemo very often. Not only does she have her sense of taste back, she can smell things again. I've even heard her sniffling a little as she gets used to the moisture in her nose.

Now that she's been through her first round, and knows that she only feels really horrible for about 3-4 days, she's decided that it's not too bad. Add in the return of her ability to enjoy food again, and she's decided to view chemo as a respite from her Sjogren's, and not the nightmare experience she was afraid it was going to be.

Now that's how you put a good spin on something.

Monday, May 9, 2011

5 Years

Michael, you turned five years old today.

The past year has been an amazing year for you. A year ago I could easily pick you up and carry you around for some time. Now, when I pick you up, you start sliding out of my arms after just a few moments because you have gotten so heavy. But, your long legs stretch down so far, it's not like you have far to go when my arms give out. You've gotten so big this past year that several people have asked me what grade you are in! They are always surprised when I answer that you are in preschool.

In addition to your height, I think people also mistake your age because of the way you speak. Between your clear speech and vocabulary, you haven't sounded like a four year old since you were about two. Several of your teachers at school have commented on how they find themselves engaged in a conversation with you and forget that your just a little boy. While I'm used to that aspect of conversing with you, my big realization about your speech this year was that I no longer "scaffold" language with you. I used to try and speak just slightly ahead of where you were developmentally, but somewhere over the past year I realized I was simply speaking to you the way I do with everyone else. There were only a few times you needed clarification on a word, and a simple explanation seemed to do the job.

One of the most surprising things I learned about you this year is that you are a rule follower. Your teachers constantly tell me what a well behaved little boy you are. You've never been sent to the director's office, and as far as I know, they have never needed to put you into time out. In addition to being a rule follower, it disturbs you when other children break rules. While you refuse to tell me anything about your day at school, you frequently report on who has broken what rules and who has been sent to time out.

Your desire to follow the rules frequently comes in direct conflict with the fact that you dislike most rules. This has resulted in one of your biggest developments over the past year. You have become a hardcore negotiator. Instead of breaking the rules, you work very, very hard to change them. Some people find this very frustrating as they think little children should do what they are told. And, when it comes to health, safety, and respect for others that is true. But, I love this about you. I love the creativity it takes to come up with so many alternatives. I love the sensitivty it requires to try to understand the situation well enough to manipulate it. I love that you are willing to push against the status quo.

It does, however, make playing board games with you a nightmare. Playing Candyland with you is an exercise in pure torture, as you constantly try to change the rules to insure that you win. I confess, it was I who hid it from you.

One of the biggest changes you've made over the past year is that you have become more reasonable. You have always been a naturally contrary child, so much so that you would even defy things that are in your own best interest. Once you resisted something, you would always resist it. Now, however, you are willing to listen and consider changing your mind. This has lead to significantly fewer tantrums, in the past six months. I think everyone is happier for this development.

One thing that has not changed in the past year is the fact that you hide your skills until you feel confident that you have mastered them. Last year you would draw free hand, but refused to color because you were unable to stay within the lines. Lots of practice over the year has allowed you to develop very good coloring skills, however you stopped drawing free hand because your pictures didn't look exactly like what you wanted them to look like.

The biggest skill that you have been hiding is how well you can read. Despite the fact that your teacher is frequently telling me how well you can read, you refuse to do it for me. I've given up trying to explain to her that you'll do things for her that you won't do for me, and I just nod and say yes. However, while you won't sit down and read to me from a book, you frequently give yourself up accidentally. You'll ask for something in the grocery store that you could only know by reading the package, you'll comment on something you read along the side of the road, and sometime you even slip up and read something in a book like "Silvisaurus" because you are too excited to remember that you don't read for me.

This past year has been exciting, and it make me even more excited to think of what is to come over this next year as you continue to grown, mature and learn. I cannot wait to see the changes that take place as you transition from daycare into Kindergarten.

Thursday, May 5, 2011


My mom is improving everyday, and last night she finally felt up to a visit from Michael. She's missed him terribly, and so has he. He even told me the other day that he wanted to talk to her doctor and make the doctor let him see her.

My mom lives on the top floor of her apartment building at the farthest point from the elevator. When the elevator doors opened, Michael took off running. My mom heard him coming and stepped out into the hall. Michael ran at top speed down the entire length of the hall until he was in her arms. They wrapped their arms around one another and they were both grinning from ear to ear.

It was glorious.

Wednesday, May 4, 2011


Yep, it's that time again. you know, the time where I make even less sense than normal. Randomness!

  • I had a discussion with my neighbor last night about what he should get her for Mother's day. She's hard to buy for. Really hard. One of his ideas was to get her a hotel room for the day and let her go there and do whatever she wanted, all by herself. I don't think he'll do it, but doesn't that sound AWESOME!
  • I've discovered that Michael is much more willing to eat dinner if I pretend to speak for the food on his plate and ask him to send "me" to the party in his tummy. Granted, I sound like a crazy person when I squeak out, "I want to do the esophagus slide, " but it works. Thank you Yo Gabba Gabba.
  • My mom is regaining her strength from her first round of chemo. She hasn't started losing her hair yet, but I've assured her that I have a pair of clippers and I'll trimmer her up nicely when she starts getting patchy. I'm strongly considering giving her a Mohawk.
  • Did I ever mention that when I was little, my mom used to take me to the hair dresser and tell the stylist to make me look like Shirley Temple? Guess what, I hated that.
  • Don't worry, after snapping a picture, I'd finish off my mom's hair and help her fit a wig.
  • We went to my neighbors' last night to celebrate their son's 5th birthday. When it was time to leave, Michael ran out of their house. After saying our goodbyes, we stepped outside and Michael was gone. No worries though, I glanced in our door and saw Super Mario Bros. on the TV and knew he was OK.
  • On the other hand, since when can my little baby learn how to: open doors, turn on the TV, navigate using two remotes to get a video game on, and play video games?
  • Yikes!

Monday, May 2, 2011

Reflections on Nature

My mom started Chemo last week. The actual six hour session went really well. My mom had no problems with the infusion, she got to chat with other patients, and the nurses even brought them lunch. When I picked her up and asked her how it went, she said she had fun. Not what I was expecting to hear, but a pleasant surprise.

One thing they all told her during the session was that the third day is the worst. Sure enough, by Friday she was starting to feel it, and by Saturday she was sick. Very sick. The best I can tell from her description is that she's feeling an overwhelming sense of fatigue. And, unlike the flu, she isn't tired enough to sleep through it all. So, all she can do is lay on the sofa and watch TV. Even playing on her Nintendo DS is too hard for her.

Part of me feels like the entire world should just come to a screeching halt during all of this. My mom has cancer and she's undergoing chemo and life should not simply just go on. It feels wrong. Why isn't everyone frozen in time holding their breath until this is over?

On the other hand, life does have to go on. I still have a job that I need to do. I still have a family that needs to be cared for. In fact, Michael needs more attention during this time to help him adjust to all the changes this has required from him. We can't just hit the pause button. We can't hold our breath. We need to carry on with our lives as best we can.

On Saturday, while my mom laid exhausted on her couch, we decided to take advantage of the perfect spring day and head to the Morris Arboretum. All of the dog woods and cherry trees are in bloom, and I imagine it was probably one of the most beautiful days to visit out of the entire year.


The Arboretum has a very English garden feel to it. There are gazebos and rose gardens, and a lot of stone walls and paths.


We have had a ton of rain this year, so everything is lush and green. We spent several hours wandering the grounds.

Michael let his imagination run wild. He found "secret paths" around every turn and raced along them chasing some mystery of his own making.


At one point we even had a fairytale story going where Michael started as a lion statue that was brought to life by a fairy. She tapped him on the head to bring him to life, and she turned all the children into lions so they could play with him without fear.


The fairy was particularly enchanted by the pink Dogwood trees and she stopped to gaze at them while her little lion took off down another secret path.

Andy and I drew attention to everything that we thought Michael might enjoy. We threw stones in the streams, pumped water at the log cabin, and wandered for so long that we were all exhausted by the end.

At one point, I discovered a puff of feathers on the ground. I called Michael over and explained that it looked like a hawk had caught a bird to eat. At first glance I thought it was a blue jay, but after looking at the feathers closer I realized that it was most likely a mocking bird.

Michael wanted to know why a hawk would catch a bird so I explained that hawks need to eat, and that they eat other birds. Michael was very sad about this. I tried to explain the food chain to him to help him understand. He picked up several feathers and kept them with him through out the rest of our walk.


Later that night I called my mom as we were driving home from the mall. She sounded like she was doing a little better. She had managed to eat a little and the aching in her shoulders was gone. I asked if she wanted me to visit, but she didn't have the energy for it. Michael did ask to talk to her, and they chatted for a few minutes before he returned the phone to me.

As I spoke with my mom to make sure she wasn't running a fever or experiencing any of the "symptoms of concern" Michael played with the mocking bird feathers from earlier in the day. I hung up, feeling helpless and dismayed. Michael pondered the feathers a little more.

"I'm really sad about the bird that got eaten by the hawk." He said.

"I know Michael, sometimes nature is sad." I replied.

Very sad, in fact.