Tag Archives: cp

I’m No Saint

— Guest Post by Mom —

I had a thought recently that made me realize what a hypocrite I am. You see, there is a family in my town that I heard about through the grapevine who have taken in multiple foster children with disabilities. I initially thought to myself that they were such wonderful loving people to do something so selfless. And that is absolutely true, they ARE wonderful loving people, but I am so incredibly irritated with myself that this was my first thought.

That may sound strange to some of you so let me explain. I have been at the other end of that well-meaning thought many times. I have had people actually tell me I was a saint to be in a relationship with Dan because of his disability. I am sure there are even more people who have thought this, but not said it. On a good day Dan and I laugh about this. We know it’s meant in the best possible way. We also know that if anyone in this relationship deserves sainthood it’s Dan for putting up with me! I am one big hot mess!!

So, why does that sentiment bother me so much? Because at the root of it is the assumption that it takes a totally selfless person to love someone with a disability and that implies that a disabled person has nothing valuable to contribute to a relationship. Now do you see how offensive that is? Of course, I know that no one who has said that to me means it that way, but that makes it no less offensive.

I can assure you I am in no way a saint. Not one bit. I’m not very selfless. I’m actually pretty spoiled. Let me tell you just how wonderful I really am.

Dan and I met on an online dating site. We had only communicated via text and email before our first date. He told me he had CP and that he walked with a cane. I didn’t know anything about CP at the time and I just assumed that he had a slight limp since he only needed a cane. Then our first date came. As he got out of his car and walked toward me I thought, “Well, that is a lot more than just a little limp!!!” And you know what else I thought? “There is no way he is 5’ 8” like his profile says!!!” Yeah, I am really selfless, aren’t I? I have such deep thoughtful reactions to things.

[On that note the first thing I said when my oldest daughter was born was, “OMG! Look at her feet!!!” They were unusually long and skinny and after 11 hours of labor those were my first words about her. I am never going to be known as profound.]

I really loved that date. Dan was handsome and funny. He seemed kind (and he is!). Still, I had so much self-doubt that I told him later that I didn’t know if I was going to be able to be in a relationship with someone with a disability. It wasn’t his disability that bothered me. It was ME. I thought I was going to do and say stupid stuff all the time and I didn’t want to be an embarrassment to him.

The good news is that it only took me about 24 hours to realize that I really wanted to keep dating him no matter how dumb I might be. The bad news is that I am constantly an embarrassment, but for entirely different reasons. The other good news is that he loves me anyway.

Last night this family I mentioned posted a video of their son with CP trying to stand up on wood floors with new slippers on. He struggled…and giggled…and struggled…and finally he got up. Dan and I chuckled about that determination because it is so much like Dan. It was in this moment I realized my hypocrisy. This is not a family of saints. This is a family with so much love they have a need to share it with children who may not have it otherwise. That is not selfless. It could even been seen as selfish. They want to fill their house with more and more joy. It is probably hard sometimes – may most times; maybe it’s even painful, but they know that the gift those children give to them is worth more than anything else in the world.

That is how I feel about Dan. His love for me is the best thing that has ever happened to me and I am so thankful I didn’t give into my doubts.

 

New Situations: Fun and Frustrating

Last Friday night was a night that Lauri and I had been anticipating for several months. It wasn’t intergalactic travel or anything. (I’ve been waiting for that for far longer!) It was just a date night that we made special plans for. Normally, if it is our night to spend with the kids we make sure they are involved with whatever we do. This time the venue wasn’t kid friendly. Luckily we have great friends who setup a sleepover. Thank you! The girls had so much fun they didn’t want to come home. (I’ll choose not to take that as a commentary on my parenting abilities.)

The night was centered on the late show at a local comedy club (I won’t mention the location since we don’t want them boycotted or any other backlash).  As with many comedy clubs, it is a small space with a lot of people anxious to get to their seats, this means I need to be aware of everyone who comes close to us. I also have to remember that people mean well, however uninformed they may be. There were, as always, people who took every opportunity to touch Casper and I did a decent job of keeping calm (I think). Based on the number of people in this space and the general admission policy Lauri did help us and asked to be called to the front of the line when they were ready to seat guests. (Editor’s Note: We got there early and were at the front but some people moved the barrier and moved in while we were talking!) They did this, and allowed us to the front. You might think that this would resolve all the issues, right? We did too! Here’s how this works. You, as guest, stand at a podium, present your proof of purchase and an ID for all members in your party. With this step complete, the “podium dude” tells the staff where to seat the guests. (Have you spotted the issue yet?) So, we walk in, down a rather narrow hall and into space filled with a stage and as many tables as you can pack into an area by law. We have been there before, but not with a Dane. I needed a few seconds to survey room. As I did this the waitress puts menus on a table and barely waits for us to respond. The table they chose for us was against the front wall that shares the stage, and in a corner that wouldn’t allow us to move, much less see the stage or enjoy the show. Lauri spoke up for us and asked for another table. The waitress said, “We sat you here because of the dog.” About this time I’m done with my survey and I process the conversation happening. Before I can finish thinking “Oh S%!t” and respond, Lauri says “OH REALLY?! You know that’s illegal, right? Do you really want to discriminate based on a handicap at a Josh Blue show?” (He has CP too). The waitress scoots off to ask if we can sit somewhere else. (Wait, What? The room is empty sweetie?). So I tell Lauri, while we wait, that I want to sit over there. Over there, has a table backed up to a waist high wall with plenty of room to keep Casper out of traffic and safe, as well as great visibility of the stage, an access to an emergency exit. The waitress comes back and tries to seat us front and center, literally against the stage. If I said there was eight inches between these tables it would be generous.  (Again, way wrong answer!) I have a hard time fitting there, never mind having a Dane next to me. No way to fit Casper underneath and the narrow aisle meant that wait staff would be blocked. The waitress dropped the menus, told us we would have to share the table with other people and walked away. (Did you guess what’s next?) Lauri puts down her items in her hand on the table and leaves us to “have a word” with someone. At this point all I can do is stand there. I had a Dane in my left hand and no way to gather up her items and the menus without possibly scaring Casper. I really wanted to just go seat myself and allow the staff to cope with the change in their own way. I was stuck waiting, so I enjoyed the interaction between Lauri and the staff. I am at a comedy club; I just decided my show started early. As it turns out Lauri actually said. “Do you want to go in the back and ask Josh how he feels about a fan with CP being given a hard time over a seating preference?” As they came back I was finally able to state my preference.  We took our seats, after being told in a pointed, matter of fact manner, “you WILL be sitting with another couple”. (They must have been at the seven o’clock show, because we sat alone.) (Editor’s Note: When I went up to ask to speak to management the girl just looked at me and then turned and looked at another woman. This other person was apparently the manager. Nice service. She did try to say that they were worried about the dog in the way and I again told them that we would worry about that but by putting us in an “out of the way” seat was a violation of federal law. I pointed to where we should sit to be best for everyone involved and she complied.)

We enjoyed the show with no further incident, other than those who had one too many practically trying to trip over Casper (he was out of the way entirely). Josh was hilarious, and I particularly enjoy the one liners he throws in that are inside jokes for those of us who deal with disabilities daily, and watch those who have no idea wonder if it’s ok to laugh. It’s priceless. Lauri and I left with tears of laughter; while others… well they didn’t seem to get all the jokes, oh well.  It was good to see Josh Blue again, and to be able to let him meet Casper after the show. I think Casper was trying to tell Josh “Hey, you’re like Daddy, if you need a Dane I know some people.” We’d hoped to spend longer and chat but the audience was queuing up behind us waiting for their chance to meet the performers so we wished him well and thanked him for what he does. We will no doubt see him on his next tour. I’m sure Casper made an impression, He always does!

All of this could have been avoided if they had just spoken to us and said something like, “We haven’t been in this situation before, what works best for you?” Always talk to the handler, don’t assume you know more than you do. I had the venue scoped out in seconds. I work with a dog every day. Do you? If your answer is no, talk to the handler, period!  Let’s even extend this past a dog to someone in a chair, or other mobility issues. If you see a customer and think they may have a need for a moment of attention, by all means, speak up, act accordingly and you will likely be able to help with very little effort on your part. Oh, another plus, is you will likely be generating return business at the same time! Unless of course you don’t like money then by all means, please think inside your neat little box. We can go elsewhere.