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Tuesday, August 18, 2009

They don't get it

I belong to a Mom's group that gets together and does fun things about once a week. Many times, Elise and I don't get to go because the timing of things just doesn't work. They try to plan things with Elise's schedule in mind, but some things they just don't have control over.

This week they decided to take the kiddos to see the Disney Christmas Carol Train Tour. When I heard about it and tried to work out the logistics, I decided it was too much and wasn't going to go. I've been trying very hard not to let Elise's diabetes stop us from doing things, but this was just going to be too hard for one person to handle on their own.

But then my husband came up with a great plan... Elise and I would take the train there with the rest of the Mommas, and then he would drive downtown and pick Elise and I up so we could get somewhere to eat lunch in time. This solved a bunch of problems, so I packed up the diaper bag with everything we needed and off we went.

The train ride out was so fun. Elise LOVES trains and kept yelling choo-choo and making train noises. On a side note, as I was getting out of the car at the train station, I noticed the guy in the car next to mine was checking his blood sugar. As we were walking to the platform, he started chatting with me, so I asked him if he was a Type 1. He said yeah, since he was fifteen (he looked to be in his late 50s). I pointed to Elise and said she's Type 1 too, and tears welled up in his eyes.

He said that hearing that made him want to cry, and that he would pray for us. I almost started crying as I thanked him. The funny thing is, Elise is always shy with strangers, but she went right up to this man and started talking to him about the train. Almost like she knew...

Anyway, back to my story. When we arrived downtown and got to the exhibit, I saw that the line to get in was HUGE. I started asking some people who were working there how long they though it would take. When I heard it was over an hour, I knew it was going to be tight.

I explained about Elise having diabetes, and asked if there was a way if she and I would be able to move to the front of the line. I wasn't asking for our entire group to go, just Elise and I. The first person I talked to passed me onto someone else, who passed me on to someone else, who... well you get the idea.

Four people later (and yes, I had to go through the whole story with each new person I spoke with), I talked to someone who seemed to have some authority. I had been waiting in line the whole time, hoping it would move fast enough, and the guy I talked to said it would only be another 15 minutes to get in, and it would take about 15 minutes to go through the exhibit.

That scenario made it do-able, so I said we'd just stay put. Well, 30 minutes later, we were still standing in pretty much the same spot. It was getting very close to the time that Fred was going to pick me up, so my Mom's group urged me to go to the front of the line and ask someone up there.

I again got passed from one employee to the next, until finally one guy just flat out said no. I explained that we had been waiting for almost an hour, and we had come all this way, and his response was, "so have all these people."

Oh dear. I took everything I had not to kick him in the groin for saying that. I said to him, "but my daughter has a medical condition that complicates things." At this point, even the people at the front of the line were telling him to let us go. He, of course, had to go get one more person, who finally let us go. By this point, my group had pretty much caught up to us.

The exhibit was pretty cool; it was set up inside train cars and showed stills from the movies, as well as costumes, and small-scale set designs. Towards the end of the train, they had some fun interactive games for the kids. Unfortunately, it was very slow going inside the train, and when the time came for Fred to pick me up (and we were getting very close to the time Elise needed to eat), we were stuck about halfway through.

I located an employee to help get me out and pretty much and to push through everybody. I felt embarrassed and stressed, and I hated how, once again, diabetes was running our lives.

I never, ever want to use diabetes as a way to gain favour like that. But I also hate missing out on things just because of the way we have chosen to treat Elise's diabetes. The NPH works for us. We have been getting great numbers with it. I don't want to switch to a different insulin just so we can be less scheduled.

So quit complaining, Joanne, right? For the most part I've accepted that this is just they way things are for right now. And I'm okay with that. What I'm not okay with is the ignorance people have towards diabetes.

When talking to the employees, you would have thought I was saying, "please move me to the front because I need to take my daughter home for a nap." Their whole attitude was, "so what?" There was no understanding, no compassion. They had no clue what I was talking about and didn't care.

They don't understand the worry, the stress, the sadness, and the frustration we go through as parents. They don't get the pain, the hardships and the suffering our kids go through. They don't get it and I'm sick of people thinking diabetes is nothing worse than a mild food allergy.

Sorry this was so long... as you can tell I'm still stewing over this.

6 comments:

  1. We went to Disneyland and the guy just gave us a blank stare when I explained that 3 diabetics standing in a one hour line, multiple times a day, just didn't fly. He said "Sorry, can't help you," and went onto the next person in line.

    We used NPH when J was 2. J had to eat at 5:00 exactly every night. Even though it's been years since he had to eat at that time, we still eat dinner at 5:00 out of habit.

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  2. When Addy was on NPH, she would pass out if we were so much as 5 minutes late...I completely understand.

    Right before we left MD, there was a group of moms going to see Disney's Princesses on Ice...they didn't invite us because they didn't want to worry about working around Addy's schedule. It broke my heart.

    When Addy was on shots, I always had a meal packed in my bag...usually a little sandwich,a bit of fruit and pretzels. The funny thing is that I never "planned" for that to be her meal -- I just needed the reassurance that it was there before we left the house.

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  3. @ Meri - Someone told me that if you go to guest relations at certain theme parks and show them documention of the diabetes (don't know what counts as documentation), they give you a front-of-the-line pass. I heard that Disney was one of the parks that would do it. Maybe I heard wrong.

    @ Wendy - that would break my heart too. Other Moms here have been pretty good about working around our schedule, and they totally understand when we can't make things. They don't 100% get it, but they're willing to learn and try, which makes all the difference in the world.

    I should probably bring an "extra" meal along too, I just hate feeling like a pack mule with all the bags I carry!

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  4. Wow. Hearing that tale makes me angry! Had I been there I think I'd have knocked down a few people on Elise's behalf. Kudos to the people in line who had more kindness than the employees.

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  5. I bet any mother would have let you ahead of her family. I must say that your blog has really educated me. If those employees only "did get it" or really understood....sorry that you had to experience this situation!

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  6. I always feel like a pack mule myself. I have an insulated bag that I bring with me almost every time we leave the house. I carry a variety of snacks and something more substantial because ultimately, Addison will get hungry and need to eat or possible low blood sugars will ensue.

    Bravo for taking Elise and making it work even though it took some doing and caused some stress!

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