I want to start out this post with a disclaimer that I rarely play the "handicap card." I try to do all the things that I need to do with Gavin, such as going places, without acting like I have a child with disabilities. I have been told by several doctors that we are eligible for a handicap sticker for our van, but I told them that we don't need it. I'm not handicapped, so why do we need one? I'd rather save the spots available for people that really need them. It IS more difficult having to walk further sometimes with all of his equipment and especially when it's so cold and snowy outside in the winter, but I CAN do it! Someday I may reevaluate the need for this, but for now I'm fine. And, I only mention that he is handicapped if there is no other option available for us to do what we want and need to do.
Having said all of this, yesterday we went to the mall. I normally don't allow Caleb to play on the children's play area at the mall because it's a germ fest, but yesterday he was behaving really well and there weren't many children playing there, so I consented. There was a sign that said "No Strollers." I saw 2 other strollers in the area and I had Gavin hooked up to his feeding pump, so I decided to break the rules and wheeled him on in. I was watching Caleb play with a new buddy he had met for just a little while, when a security guy came and told me that "strollers aren't allowed." I said, "O.K., We'll leave", but then I asked if the "rule applied to Children that have special needs?" He said, "Yes, if I bend the rule for you then I have to bend the rule for everyone." I understood his dilema. Since Gavin was hooked up to his pump, was half asleep and doesn't sit up at all on his own anyway, we had to leave the play area. I was fine with this and surprisingly, Caleb was too!
We walked around the mall some more and I started thinking that it wasn't quite as fine as I had originally thought that it was! I went back to the customer service area to speak with the security guard. I asked him if the answer would have been different if he was in a wheelchair. He said, "No." So, I said, "Children who are handicapped and unable to get around on their own aren't allowed to enjoy your play area?" He told me, "Not if they are in strollers and wheelchairs. It wouldn't be fair to others if we let them go in when others can't." This response did not settle very well with me! So, I'm thinking to myself, "How fair is it to exclude a child just because they can't crawl or walk?!" I said this to him and I also said that "I'm sure that others would understand the circumstances and just be thankful that their child doesn't have to be in a wheelchair!" Life isn't always fair! It's not fair to me that Gavin had a stroke, due to hospital error, and now he will probably never be able to get up and go play with his brother in the play area! It's not fair that other children will be excluded from so many normal childhood experiences, just because they can't walk!
The security guard said that he understood my feelings, but that I had to understand his rules. He also told me that I should "plan accordingly for the day and come to the mall when your son is NOT on his feeding pump, so that it would be easier to carry him in." (Yes, he said this to me!) I said, "Yes, I could do this, but what about when he gets too big to be carried in? What about other children who are too big now to walk in, but their parents want their other children to be able to enjoy things too and they want their special needs child to not be left out of the fun." Gavin may not be able to sit up, crawl or walk, but he truly finds and shows pleasure in hearing his brothers and other kids playing. He smiles and yells and he is happy as can be while being a part of all the fun! Why should he and others be excluded because life wasn't fair to them?!
All of this conversation with the security guard got me and Gavin no where, but I couldn't just sit back and accept "their rules." I was very calm and I do understand his point to some extent, but it really infuriates me to know that because my child has to live a lot of his life from a stroller or wheelchair, he also has to be excluded from so many things! And, don't even get me started on entrances into stores and other places! Since having Gavin, I've noticed how difficult it is for people who are wheelchair bound to just get into places! I realize that things have improved over the years, but they have not improved enough for this Momma!
Gavin has had to go through a lot in his short life and he has had to be tough a lot of the time!
This makes me want to stand up and be "tough!" for him and others like him! Because of him, I will most likely have to encounter many more outings like this, but I can tell you one thing, I will fight for his rights and I'll do it with a smile on my face, because I believe Gavin would want me to, for him and all of his buddies!
***Oh, and I do plan on sending a nice, friendly and educational letter to the management of this mall. I believe that they need to, at least, be made aware of my feelings and hopefully they will take them into consideration. If not for Gavin, then for some other child who wants to play there one day!***
"I have fought the good fight, I have finished the race, I have kept the faith. Finally, there is laid up for me the crown of righteousness, which the Lord, the righteous Judge, will give to me on that Day, and not to me only but also to all who have loved His appearing." 2 Timothy 4:7-8