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Tag Archives: cerebral palsy

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.

 

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Learning and Growing (the hard way)

With this blog you will find many entries written from Casper’s perspective.  We like to play with what we think might go through his mind as we go about our daily life. From time to time you will find pieces that come directly from me and share what I think and how I feel. I’m apprehensive to write many of them; okay, all of them. Today is no different, and I will do as I always do and leave it up to my editor (Lauri) to decide whether this passes muster or gets swept up with Casper’s cookie crumbs and the cat hair.

There is a reason I’m unsure if I should share this or not, that reason comes down to one word, and a concept that is uncomfortable for most of us, that word is failure. Yes, failure. For me, just the word sends a shiver down my spine and a sinking feeling to my stomach. To help us feel better about it I would like to share a quote. “Success is not final, and failure is not fatal; it is the courage to continue that counts.” ~ Winston Churchill (To name drop, my understanding is that we are related on my maternal side of the family.) With this in mind, let me change tracks here and make this post about having the courage to continue. (There, I feel better already!) Since I’m not dead, and far from, done all that’s left, is continuing…and to learn from the rough patches. I’m sharing this because I assume that many would not.

The road to success starts back in Connecticut, at the Ye ole Condo, where we first brought Casper to live with us. I will tell you now I love him (and Lauri) more than you can understand. I’ll say this now so you keep it in mind as we go. The Condo was great and fit my needs for quite some time. We quickly out grew the home as Lauri and I committed to each other, not to mention the two kids, three cats and Casper. Not only did we run out of indoor space, but I quickly felt confined by the association rules around dogs and the lack of freedom for Casper to stretch out and run the way he could before he was released for service. I vowed that when we moved he would have a fenced yard so he could run free.  We found our home and although we are replacing the fence because 75% of it is inadequate for the long run, it is fenced and safe for him to run in. I somehow thought that if I didn’t give him space to be free and to ‘be a dog’ that I wasn’t showing him the love he deserves for wanting to work for me. (Casper really loves his job. He practically runs into his vest and correction collar when I hold them open.) So this, if I haven’t foreshadowed it, is where I went wrong. I didn’t see that I went wrong, others did, Lauri did and she told me. I didn’t listen. I heard her but I was blinded by what I wanted for Bubba. I mean look at him out there zooming around the yard, exchanging barks at the neighbor dogs from time to time, and digging a little trench in the flower bed. He’s happy, right? Sure, he’s happy. Until I need him and he plays, with a big wide grin and tongue lolling while I try to call him to me. To him it was a back yard game we played; fun! For me it was the stuff of my nightmares. My dog that I love with my whole heart didn’t want to obey. When I was super frustrated I got told how wrong I was by the woman I am going to spend the rest of my life with. (Editor’s Note: I did not say, “Hey, you are wrong.” I just suggested, and maybe yelled a couple times, that he needed to chill out a bit.) These things, for me, are crushing; virtually blinding. Keep in mind this process took weeks.

I now had two different dogs. One dog in a vest, that is good in public and one dog that was a jerk at home. I am stubborn, to put it nicely. I knew, deep down, that I had to go back to basics. One step crawl, a lead when “doing your business”, and treats for responses I wanted. I was even told this by Lauri and trusted advisors, but somehow I didn’t act. The only explanation I can come up with is that I needed proof, again. OK then, let’s prove the two faces of Casper. We went to an event at Creek County Fairgrounds called Vintage Market Days. The event was centered in a large arena that most often, houses large animal events, based on the dirt and straw floor, and waste receptacles labeled for or against specific output. There were food vendors selling everything from funnel cake to BBQ to stir-fry outside. Inside there were easily a hundred vendors selling all types of antique and hand-made up-cycled items. We didn’t buy anything because most of what I saw was at full retail and we were in a tag-sale state of mind. Still it was great to see creativity abound. On top of this, it was a great “work” environment for me and Casper. We took each other through tight booths crammed with items and through throngs of people. We did this as if we were a professional dance team. We even had one woman, behind me; reach through my bent arm to pet Casper. I’m sure if it were a guy I would have tried to liberate that arm from its torso, but Lauri and I sufficiently “notified” her not to touch a service dog! He did an amazing job.

There is another picture to paint and it is a dog that doesn’t want to work in his yard. When I try to use him to brace while I pick poo, it’s HIS poo, but fine. Then when we go out for the final walk of the night wants to play in his yard and will not come until he is damn good and ready. I tried and could not get him to come without a stuffie. Lauri and I finally got him inside after I was damp, dirty and so upset that I was seeing red. This is a night that I got the “I told you so…” treatment and neither of us slept. I was mad at her, I was mad at Casper, and I was furious with myself because in reality the entire event was something I had created. This could be horrible, horrible news and if I don’t do something I could lose my service partner, and if we string enough sleepless nights together Lauri too; but like I said in the beginning I love both of them too much to allow that ridiculousness.

So, epic fail, now what? Now we look at what we know. We know Casper really does know his job, he wants to do his job, and we work well together. We also know that I stopped listening, I stopped seeing, and I needed to change. That ought to be enough to make the machine function so I set out to get us all back. I put cookies in my pocket, a lead and correction collar on Bubba, and went outside. We one step crawled around the yard. We one step crawled down the driveway and up the street to the corner and back. We worked quickly at exhausting the treats in my pocket. We proved he will in fact work in his yard. In the days since I always keep a supply of treats in my pocket and a calm demeanor. I can now call him in (off lead) from the yard at will with a happy tone and a treat. If I do need him in immediately, he will happily do his ‘business’ on a long lead and come back in. Yes, he gets a treat every time now. (Editor’s Note: It only took a day or two to get back on track. They both know what they are doing, but just got lazy.)

The next test was to take this show back in public. To do this I tried the Leanlix treat stick (…that Lauri bought us to start recall training in the yard and I so famously ignored weeks before.) Lauri and I dropped the girls off with their grandparents and we decided it was a beautiful day to visit the Philbrook Museum of Art. We walked indoors and out. We worked up and down stairs with no rails, past Koi ponds, past other visitors. We even worked past a garden cat who wanted to make sure Casper knew he was the boss. We worked and I treated each success with a beefy lick. (I think Casper may want to write about Philbrook too, so I won’t steal his thunder.) The day, and Casper, was perfect in every way.

I have learned what Casper was teaching. He taught me to not take the little things for granted. Just because someone is your friend it does not mean it’s alright not to thank them for their help. Friends and family don’t have to be there for you when you get angry and thoughtless. In Casper’s case cookies and treats and letting him know I value him by working together as often as possible.  In Lauri’s case, letting her know I value her by actually listening and taking the advice that she, and others give, rather than just hearing the words. Just because I didn’t want to hear her doesn’t make what she had to share was wrong. (I knew damn well she was right, and I was just being a brat.) (Editor’s Note: He totally was. We have RARELY fought. He is usually the most thoughtful man on the planet. I hesitate to ever yell at him or boss him around, but he needed it!) Please don’t make the mistakes I made and not pay attention. Your well-being may be on the line. Now it’s just about time that I refill my pocket and take a drive or a walk and see what I’m looking at, hear what I’m listening to, and be grateful for what crosses my path. If I can do these things there is no possible outcome but success.