Two year old Gavin, was born with Leber’s Congenital Amaurosis (LCA). There is no cure, but we are helping to try to change that. This blog was started within 48 hours of receiving his diagnosis, at 4 months of age. It documents the triumphs, struggles and joys of raising a child, who happens to be blind.
Tuesday, March 9, 2010
Irreplaceable (and a rant... fair warning)
ir·re·place·a·ble – adjective "incapable of being replaced"
I have a thing for the universe. I feel like we kind of get each other.
We have a relationship, and I think I am on the right path of understanding the big picture of what it all is. When I really sit in the quiet and think of the galaxy, and picture its enormous size, I can really get dizzy. Even to the point of feeling a little bit queasy. Does it ever end? Where is the end point of life, in the universe of what exists? How tiny are we really in the grand scheme of all that there is? I often watch the Planet Earth shows, and others like it and can honestly say my breath is actually taken from me at times.
I am a ginormous fan of the planet, nature and especially sunsets and trees. Not to where I'm overly tree huggy, but just mesmerized by its beauty and really captivated by the magestic aspect of nature.
When I see pictures or video of planet Earth from a great distance, to where it looks just like a little round ball, I get an overwhelming feeling over me that we are truly ONE. One that is, human. I even have told people that I wish all these individuals who are fighting, be it politicians, countries, racists, or just plain old jerks would be sent up to the moon (on the same shuttle, and all together) and take a look down at Earth. Take a good, long, hard look at the one planet that gives them life, the one planet that allows them to make all their dreams come true, the one planet where they coexist, whether they like it or not.
Call me cooky, in my mind, that is the way I would save the world. In hopes they would see their lives differently, and what they were doing and what they were fighting (each other) and just take advantage of existing, and living. Come back to earth with a renewed energy and have a change of heart.
Ok, back to reality.
And how funny, that it is true that we really fight with one another. Human against human. We even get bothered that we can't keep up with the Jones' or irritated that we aren't skinny enough, pretty enough, or have enough. The point of this is, nature really is a part of me. I mean, it really brings over a change of attitude when I see the beauty in which nature and the world, the universe has to offer. Not just knowing it's there, but visually seeing it. Being captivated by the magnitude of its greatness and know, really know that you have to obey nature and respect it. Just by seeing it. It is that big, that spectacular. Without sounding trite or cliche, we really are just a speck of dust in all that exists, and just a blink of an eye in the big time frame of existence.
And that makes me mad at times. Why? Because my little boy doesn't have that visual. He doesn't know what the moon, the rainbows or what the trees look like. He has his own vision of what it might look like, but no point of reference for what it actually looks like. I think I have the right for that to bother me. Days like today, I get really ticked. In all the positive we try to see in what his vision loss has brought us, I would never change, but that doesn't mean that it still does not really get me, and get me hard with sadness, anger and doubt.
Gavin has been sick, really sick actually with pneumonia. The only thing I have to soothe him all day long, is my (horrible) singing and music. We can't curl up and watch cartoons, I can't take him for a drive and drown him out with the magic that peers through his window. I can't look down at him at the doctors office and make funny faces at him to keep him entertained for hours on end. Not that I don't mind it being hard for me to try to console him, I am his mom and will do what it takes. It's just these times that his vision loss is really brought to the forefront of our reality.
I have a right, and it at times, really hits me.
The ability to see, it's irreplaceable.
I don't understand a lot of things. All that I have described with the greatness of nature and seeing these enormous creations, and you're telling me my son can't see?
Whaaaa... wait.
What?
Yeah, that's how I view it at times. I know it's greedy, it's irrational and a bad perspective. But it's relevant to my life and I go there at times.
I understand others suffering, and my son is healthy, but this is my rant for the evening. I don't often go here to this place, it's in me, but I try to cover it up with whatever I need to do to help me on this journey.
I want him to get that feeling that I get when I see the ocean, and when I gaze up at the Sequoias in Kings Canyon (my favorite place in the world). The view from the top of the clouds on a plane ride, or the happiness that my oldest gets when he sees the beginning AND the end of a bright rainbow, with dark clouds behind it making the colors burst. That breathtaking sunset, the sight of those snowcapped mountains, or the happiness his soul can feel, by glancing my way and me giving him my smile or nod of encouragement and approval from a distance.
Yes, he views it differently, yes he feels it, but dang it... I want him to see it. How can I EVER communicate this glory to him, effectively?
It's irreplaceable. Regardless of how good of a job I do, to help him find that connection to nature and feel it to see it; he can't.
Treasure nature, and really try to understand it and relish in it's offer to you, visually. It's there, it's waiting for you to embrace it and see it.
See it for Gavin, and for all those out there who cannot see it the way you can. Or see it for those that just don't get it. Don't worry about the nonsense that we so often get wrapped up in, appreciate it.
Appreciate the irreplaceable with your eyes. And see the irreplaceable with your heart.
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best.post.yet
ReplyDeleteWOW! I mean, really -- *WoW*
I'm sharing this.
Megs
"Appreciate the irreplaceable with your eyes. And see the irreplaceable with your heart."
ReplyDeleteDing ding, we have a winner. Love that end. Can I share it on FB?
If there's one thing that ever hurt me growing up as a blind child or even now as a blind person it's that people think the way we view things without vision could never be as magestic or beautiful as what you see with your eyes. I don't mean to be belligerent but yes blind people can appreciate nature and be moved by it by listening, touching, smelling and tasting. Sure we can't share your eyes but neither can you share our senses, We are not lesser beings with no concept of beauty. Your post is beautifully written but it makes me feel worthless as a person. Please try to understand that there is more than one way to see a sunset.
ReplyDeleteIf my post makes you feel worthless as a person, then what you are saying is that I am raising my son to also feel worthless and less of a being with no sense of beauty or worth.
ReplyDeleteAbsolutely not.
My words were more about me. How can I as a sighted parent, effectively communicate that? Yes, I understand I don't have your senses, my exact point. I even said, yes he views it differently than me. I never said that is any less majestic or beautiful?
I get a certain feeling when I view these things with my eyes. Not with my other senses. Why is that opinion feeding your feeling of worthlessness? I never said you or my son won't ever capture that same feeling with your other senses?
I'm sorry that is the way you took it. Me and many other parents of VI/blind children often have the discussion that we feel we get knocked by our "bad days" and sad times (which this post was written on a sad/bad day). There is no denying that I do not accept my son for his visual impairment, which is a part of who he is. There also is no denying that me (a sighted individual), does not get sad at moments that my baby is blind.
That is not saying you are less than who you are, or my son is less of a person than who he is. I have that right to fight for his vision, and hopes he can visually see that sunset, and see it differently than how he sees it now. Because I am the mother of a child who is visually impaired does not mean that I am dismissed from my feelings in my heart in regards to what I would like for my son. It also does NOT mean that I view other blind individuals as worthless because we do not share the ability to see.
I hope you have read other posts from me. My son is 17 months old... this is a journey. A road I don't think you have been on (as a born sighted person with a visually impaired child). I respect your opinion, but it makes me a little sad that is what you got out of it.
I have a lot of understanding and yes, there are other ways to see a sunset, but I will go to my grave to help my son visually see it if that is what he so chooses to do one day, and treatment is available.
And also, thank you for telling me I cannot share your senses. Maybe I should tell you that that made me feel less of a person.
But it didn't.
Thanks for your comment.
jstevens04@gmail.com email me if you would like to share more if interested.
Im sorry Mike feels that way. I have RP, and have seen that sunset, those rainbows. I hardly can now, and wish I didn't take it for granted when I could. Gavin's mom, I don't think you said anything wrong in how you feel. You share your heart and there is nothing wrong with that. I dont feel any less of a human, vision is a part of what makes me humn. I keep up with your posts and they are inspiring. I cant imagine knowing what I go thru everyday and from you as parents trying to raise a child who is blind. Im sure it is difficult but thankyou for sharing your heart.
ReplyDeleteWith much resepect,
Marty
Greetings from Germany.
ReplyDeleteI am deaf and long to hear the voices of my children and my wife. I understand what you mean, Jennifer. That does not mean I do not feel their voice, nor negate the feeling of me wanting to hear their voice. Im sure it is irreplaceable as you have stated. I get angry, I am 47 yers (young) and all your opinions are valid. I never have heard my children's laughter and hope I do before my life is over.
Jennifer-you never seize to amaze me. You rant and rave all you want because I know at the end of the day you will pick yourself right back up! You are truly amazing and like I always say you are where you are supposed to be in this moment. You are causing a stir (in a positive way) and are taking action. I will not take for granted my vision - for Gavin's sake. :)
ReplyDeletexoxo