WOAH, no one likes to hear that word! If you say "entitled" then maybe it's ok. But entitleMENT seems to put a bit of a spin on it that suggests that somehow it is wrong. It is a state of mind/descriptor/etc that people shouldn't have. But somehow to say to someone "you are entitled to it" is still ok.
So, why would I throw out such a word to start off this post? Because I had a little battle with myself about entitlement today. Yep, with myself. Let me tell you about my day today.
At 5:45 my alarm went off and I crawled out of bed after about 5 hours of sleep, wishing I could lay back down. The day before we spent about 10 hours in the car driving home from a weekend get-away and I had started feeling poorly the last half of that trip home. By the time we were home, I had to get the kids in bed, three little boys showered in preparation for today's adventures, everyone's medications done, and Michael unpacked the car and cleaned it out as well. Then we got everything ready for today- clothes out for everyone, medications and feeding pumps and diapers and formulas packed again.
Today at 6:30 we pulled out of our house in two cars with our three younger boys and drove an hour to Orlando to the hospital. Traffic and road construction had us cutting it close to the wire for arriving on time. Then we drove in circles for 30 minutes trying to find the entrance that we'd been told to valet park in front of through all of the construction, finally giving up and finding a garage that we were told by a kind man on the side of the road would connect us where we could at least walk to the correct building. Once inside, we walked the entire length of the hospital then turned and walked the entire width of the hospital. We got to a desk where we had been escorted to by an RN that was headed a similar direction and was in the parking garage with us, only to be told to retrace our steps for surgeries and go back practically where we had come from but following a different set of hallways once we got halfway.
We walked in to a long room with a door at the end and recliners lining the walls and went up to an empty window at the end sporting the photo of a man whose name was the same as the lady at the first desk had said it would be. Three staff people went in and out the doors, and we stood there still... 30 minutes late to our appointment. Finally they said "oh these are the brothers!" and brought us back to be weighed then in to a room prepared for them with three hospital beds. Then they came in to tell us that things were "running behind" because of some complications that were unexpected with some of the first patients of the day. Eventually, the first two boys went back to back for procedures and Michael met each one in the PACU to sit with them while they woke up, then Micah was sent back to me in the recovery area just as Wesley was taken back for his procedure, then James and Michael came back out a little while later. Things were going like clockwork.
Michael and I dressed the boys, gave them clear liquids, and some young girls showed up with wheelchairs ready to escort Michael, James, and Micah to the car to go home. Wesley's surgery was scheduled to take a little longer. I was called to sit with him in PACU just as Michael and the little boys were ready to wheel out, so we said our goodbyes and went separate ways. Another 4 hours later, after things that shouldn't have really been very much different than the first two boys just didn't happen in the same way once we were sent to a different (mixed adults and children due to the later time of day) recovery room... Wesley and I finally got our jailbreak.
I should mention here that I woke up that morning with a sore and swollen throat and took Tylenol which helped tremendously the first half of the day, but quickly wore off as the day wore on. I was tired, achy, icky feeling, and *I* wanted to go home... and Wesley had been a great patient, but his patience had worn off and he was DONE by the time we convinced the nurse to let us leave.
This brings me to 5:30pm when I walked down the hallway, got on an elevator to the 3rd floor, then walked another two sets of hallways to come to where there was another set of elevators to go to the 6th floor... and saw a restroom. It sounded like a good stop to make, so Wesley and I turned in to the ladies' bathroom before hitting the elevator. 11 hours since we left home, we were exhausted, and I was, without a doubt, ready to be home. Not just that, but to get some Tylenol for the aches and fever and to curl up under a blanket and go to SLEEP. RIGHT. THEN.
That's when the entitlement factor kicked in. It drove me from "God is good, and by His grace we do what we do" which I had to have said to 10 staff members that asked how in the WORLD we could have 3 little boys with special needs that day. Up until right when we were leaving, I kept a smile on my face and a kind posture to my words. Standing in that bathroom, however, I didn't want to think nice thoughts or say nice things. I was downright frustrated. I stood and waited. And waited. And waited. The toilet flushed (Wesley screamed). The sink ran. The paper towel machine made noise. All of that happened in the handicap stall. I looked at the sink next to me, empty. And the three stalls. Also empty. None of which would help me because I needed to use a restroom where Wesley and his wheelchair would fit inside with me. We waited some more.
Finally, a single woman with her purse thrown over her shoulder came walking out with a bounce in her step. No, wait. She didn't even come out. She opened the door, and asked if she could hold it for me, while standing in the way of me getting the wheelchair in that stall, which would have resulted in her being stuck in the stall WITH us while I used the restroom. She had no idea.
She had no idea that we had been there, waiting after we left our house 11 1/2 hours prior and with my son that had been through a pretty painful surgery. Waiting, so we could go get gas, food, and get on the road after feeling like we were held captive for the last 2 1/2 hours of our time after his surgery. Waiting, knowing that this was the first opportunity in many hours that I had to use the restroom, and likely would be the last opportunity before we came home.
Something in me wanted to say something ugly. Something to say to her that she could have washed and dried her hands out in the main bathroom instead of taking up the handicap stall longer. Something to say that there really was no reason for her to be in there in the first place, because she had no disabilities and had no one with her that would require the extra space. Something that pointed out that there are people that are actually disabled and people escorting them who are being made to wait (in pain) because she wanted to take her leisurely time in the only place that they could go.
Then, God smacked me over the head. At least, that's the way it felt. The thoughts that began running through my mind went something like this...
Nothing in your life makes you any better than her. Nothing she did was wrong. She may have been inconsiderate, in taking the handicap stall, but there was no reason for her not to enjoy the space and the cleaner restroom (which is often the case) instead of one of the others. She didn't jump ahead of you and take the only place you could go, she was already in there when you came in. Your son doesn't need to use the restroom and isn't even upset about waiting (except the toilet flush which has nothing to do with where she chose to use the restroom). Just because you have a better excuse-- or even a need-- for something special for your child or for yourself because of your child doesn't make you ENTITLED TO IT.
DING DING DING. I had this creeping sense of entitlement sneak in. It's the same one that occasionally pops up when people who have handicap tags make snarky comments about all of the elderly people in Florida having handicap placards and how that's why there's never any handicap parking when you need it. It's the one that sneaks up when there have been accommodations made specifically for people with special needs that, for whatever reason, a person isn't able to utilize when they qualify for it, but it's unavailable because of some other reason-- be it the busyness of a situation, it being used by someone else, or even if the person doesn't qualify in all the categories but still feels they should be... entitled... to it. I hear it regularly about people who cannot receive medicaid when they could really use it-- but their income isn't quite within the boundaries. Or SSI for their disabled children, but their family asset base is too high. I hear it about school services and public park facilities and parking lots, and yes, even restrooms.
What we, as parents of children with special needs, need to do is take a step back from what appears to have been created "for our children" and we feel we have a right to access, and recognize that despite it being made "for them," it does not meant that we are entitled to it. The perks are great, and sometimes are absolutely necessary for us to be able to access things (such as restrooms for our children), but when something that is "helpful and great and we are thankful for someone providing it" becomes something that "we are supposed to have access to and we get ourselves all messed up over not having it how and when we want it," then... we have taken things too far. We have entered in to entitlement. We have begun to sink the ship of gratefulness and begun to build a wall of pride to fall off of.
Do I mean that the idea of accessibility is just a 'nice notion' and not everyone should be welcoming to people that need handicap accessible areas and other such 'conveniences' that make life DOABLE? No way! Do I mean that benefits that are available to people with special needs shouldn't be available to them? Not necessarily (if one qualifies within the boundaries of the law). What I DO mean, is that when others are living life innocently and choose to use the nicer bathroom or the person that doesn't APPEAR to be handicap uses their tag to park closer to the grocery store, or anything else happens which makes it so that what we feel is there FOR US and OUR KIDS is not available to us, then we need to take a few breaths. Breathe a few prayers. Refocus on God and on life and on the thankfulness we SHOULD have in everything we do. Despite our circumstances, despite our lack of sleep, despite our long days of caring for our children and despite our 'natural' tendency to want to react when we have had a day of testing.
Then, we wait that extra 2 minutes for the toilet to flush, the water to turn off, the paper towel dispenser to make noise, and we SMILE and THANK the girl offering to hold open the bathroom stall door for us. And when she gets trapped inside, well, I suppose that's when she might want to rethink her offer to hold the door next time :)