With this blog, I bring the raw truth. The truth of Gavin, our emotions, as well as the good, happy times. Right about now, what you are about to read is a rant. I apologize in advance, but here it goes:
Dear fellow grocery shoppers,
When my son and I are walking through the store, and you tell me how adorable he is in his glasses, my heart melts (he is pretty darn cute). When you ask about his condition, and I pour my heart out explaining quickly about his blindness - I appreciate your concern. But when you start waving your hands in front of his face, for the mere hope, that in that given second he will miraculously have vision and prove all my words wrong, I don't appreciate it. When I tell you, he sees well with his hands (as you can tell by the endless toys pouring out of my purse as a way to keep him occupied while I do my shopping), and you try to grab his hands (right after I tell you he is very sensitive and does not like hand grabbing), I do not appreciate it. When I tell you his glasses protect his eyes, and act as a deterrent to the eye pressing, please please please don't tell me he is probably just tired, and he is rubbing his eyes because possibly he skipped his nap. Really?
I am the first to raise awareness and am open to questions, even on my darkest of days when I feel like crawling under my rock. When I see you staring at him, I tell Gavin to wave, as acknowledgement. I know it isn't everyday you run across a blind baby. I understand the curiosity, and welcome it. All of you who personally know me, know this.
Just please don't blatantly disrespect my words, as I truly am trying to help you understand. It is unpleasant to be disrespected, and even though he is only 11 months -- he hears you and understands you.
This has been a service announcement from the Stevens Family. ;)
It took me 3 years to get to the emotional point where you are today. I was under "my rock" for 18 months and cut everyone off. I understand your sadness and the everday emotions you are forced to deal with, especially when out in public. You are doing extremely well and we in the blind community (especially Owen) thank you for bringing such awareness.
ReplyDeleteP.S. I heard about your new business venture with the shirts is there a web site we can loook at?
Ooh Jennifer, I completely understand. My worst is my anxiety built up in the car as i am sitting in the car. It's been one of those bad days full of eyeball pressing and what not and my nerves are frayed. I have sat and just cried in the parking lot because i do not want to enter the store and get bombarded with looks and questionsn because I know I would have broken down. I have turned to go home empty handed and no groceries and a feeling of defeat and the cycle continues. the finger danglers as I like to call them really need to stop the nonsens!
ReplyDeleteThank guys, it's nice to know you understand!
ReplyDelete..my little boy is 7 years old and I have experienced many of the situations you have describe. Like you, I don't mind at all when someone asks me about Graham's blindness or his cane, etc, but I DESPISE it when people are rude and intrusive. When you mentioned the finger wiggling, it made me think of Graham's first ERG...he was 11 months old, he had been under ansesthesia for this test and the nurse had just brought him into the recovery room to me...he had goop all over both eyes - looked sort of like vaseline - used to protect his eyes from scratches when they were doing the test. The test, which measured the electrical activity of his retinas, did not have a good result - it was basically flat. We already knew that Graham could see a little - he would reach for toys and sometimes follow a moving object. Of course, as his parents, we would know this better than anyone. Anyway, the doctor..the "retina specialist" asked me "Are you SURE he can see some?"...I said "Well, yes, he will turn his head and scan an area and then crawl to a toy and pick it up and if you hold something out for him, he will reach out and take it with no verbal cues"...then she proceeded to wiggle her fingers in front of his goop filled/still half asleep eyes. I didn't feel that we were in the best of hands at this point!! LOL...I can look back now and laugh at the absurdity but believe me, at the time, I was not amused!!
ReplyDeleteI have enjoyed reading your blog!! It has brought back many memories. My little boy has LCA as well, CRB1 gene.
Sydney Walker