Saturday, June 6, 2009

Dealing with reality

So today I had my first run in with feeling like Jude was at a disadvantage. I knew it wasn't that big of a deal, but it still bothered me. We went to Sam Moon, which if you have no idea what this place is, you might look it up on the internet. It's store with an insane amount of jewelry, luggage, and more at wholesale prices. I needed to get two Birthday gifts so Emily, Jude, and I went to shop. I had limited time, and since this store just opened by my house, I knew it was the place to go. I had a strange feeling in the car that they may not allow Jude in because of his stroller. I am not sure why I felt this, maybe a premonition of sorts. On our way up to the store there was a big sign "NO STROLLERS ON SATURDAY". They basically don't want strollers, umbrella strollers, or car seats. I understood this rule because the store is so busy, but I still just sighed and stood there. The big glass doors with the sign seemed to be an impermeable force. I felt defeated for a moment, and at a loss. I never felt at a loss before until the issues with my pregnancy, and with Jude. Decision making isn't all black and white anymore, but laced with gray. I thought about turning back, I thought about just taking Jude out, I thought about a lot of stuff. I began to wonder what would happen if and when Jude is in a wheelchair. I am (of course) holding faith that he will NOT need a wheelchair, but there is a possibility. I finally felt I needed to do something because not everyone's situation is the same.

So I walked up to the nice guard, and asked if there was anything he could do. I looked at the other moms carrying their babies, and their babies all were holding their heads up without problem. None of their children were spastic raring back quickly, and taking a chance at hitting their heads on something. Jude arches quickly when having a spasm, and if he isn't held tight he can get hurt. At first the guard said the no stroller rule was just on Saturday. I kindly said I understood and explained about Jude. He then he took a look at my little one and with a smile he immediately let us in. I thanked him nicely, and then in return to him I simply parked the stroller up front. I then took Jude in just his car seat, and lugged him around the store. Emily seemed to understand perfectly. She mentioned how difficult it would have been to try to shop while holding, and watching Jude's movements. I then stopped at the back counter to tell management how thankful I was that the guard helped us out. She told me how cute Jude was, and then told me to come back any time. Right before talking to her another lady made a rude comment about Jude's seat saying "I thought there were no strollers". I almost said "it's not a stroller" and then explain, but it wasn't worth it. Luckily, that same lady over head me telling the lady in the back that Jude is disabled, and how much this helped me. The rude lady looked at me, and then looked at the floor with a blank look.

It was the first time I had uttered the words "disabled" out in public. No, this wasn't someone paralyzed trying to put gas in their car, get dressed, shower, etc but it was still a humbling experience. Jude is just a baby, but getting big...he is almost 25 pounds. I could have simply left, I could simply carried him around, but it was a moment of dealing with reality, and I needed to face the moment head on. I treat Jude like a normal child, and I will continue too, BUT there are times you still have to deal with...........the new normal.


VParr said...

Hi Jenn! Just read your post and thought about how Gage couldn't even go in that store and we can't carry him because of all his equipment. He has a double stroller which holds everything. I have had trouble manuvering through stores with him. The mall makes me so nervous!

Cjengo said...

and one of the reasons I pointed out that it bothered me but I knew in the long run it wasn't a huge deal, was because of Gage. I know people's situations are worse, and I always keep that in mind, but it is frustrating.

VParr said...

I can't believe how big Jude is getting!! I understand about not being able to carry him. I wonder how others with children that have disabilities deal with this? I would think that maybe it would be against the Americans with Disabilities Act to refuse access to any public place because of equipment (including strollers) that is required? Hmmmm....I know there are some places Gage will not be able to go due to oxygen and really have me thinking now!

Cjengo said...

I agree! It's easy for them to overlook issues when our special needs children are babies, but it doesn't mean it's easier on us. At this time their strollers are their walkers, or wheel chairs. You go girl!

~The~Wacky~Whittons~ said...

We won't shop at Sam Moon just for this reason. Being a mom of 5 I would much rather have to bump into a stroller or two then have to pay for damaged items of my little monkies lol. I think it would also make it much easier on you and Jude (and your friend with Gage) if they laxed that rule.

Bronx Cataldo's said...

I use public transport do drive but we have only one car. I have had run ins with some of the bus drivers because they are just to lazy to open up the back door with the chair lift. I even reported them to the dispatcher. Had argument with the officer at the court house over bringing Finnian in to the courhouse in his chair its a convaid. So I just asked to speak to the supervisor. It was the day I was going to court to see if Finnian could get SSI. Flying is another one you have to watch out for. They say due to the new restrictions the childs stroller is now picked up at the luggage carosel. I complined at Delta as it was printed on Finnians ticket that he was a disabled child and needed assistance we even had O2 on the plane just incase he needed it. They gave us $100 voucher each but not the point a childs wheelchair should be waiting at the door. There will be days and all you want to do is scream. Just say I need to speak to managment
thats what I do now. Hang in there.

Anonymous said...

Hi Jenn,
I'm just now getting caught up on your adventures. I am so sorry about your encounter at Sam Moon. I am glad that it turned out well.
Blessings to you and your beautiful children!
Amy Hendrix (TurtleMom)