Best Husband evah

Adam is traveling right now, for the next couple of weeks. So of course, the kids are getting sick. I am getting ideas and bids to fix up the backyard. It is so exciting, I forgot about my RP for like 2 days! I mean I always see this way, but this way is normal to me.

I have been in a relationship with my husband since I was 21, and I am now 35. We have grown into being adults together. We have created these three amazing children. Lots of laughs, tears, and fights along the way.

He is amazing. I have this thick curly hair, and he cleans out the drain of my sink every six months or so. He hates it, every time you can hear him mumbling, and wondering why I shove hair down the drain. But he does it. He shows up for me in these simple kind ways. And he shows up for me in big huge ways.

I was scared at first, wondering if he would be love me the same, if it would be hard for him to let go of what we thought our future was. He was shocked, I was doubtful of his love for me. "Melissa, would you feel any different about me if I were going blind?"

He is so much calmer than me. I wish I were just a firecracker. I am the grenade to his meadow, the fireball in his swimming pool. Sometimes, he makes me so crazy. Other times, I wonder how he puts up with my insanity. I am up and down right now about all of this. One day, I say, "we need to get somewhere I can settle down, so I can be independant." Other days, I say, "let's live abroad a couple of years, I have always wanted to do that, and what if I can't later." If I lived with me, I would need to be on medication.

Oh Adam my Adam, I promise to stop shoving hairs down the drain.

I want my old problems back

I used to stress about a tidy house (okay I still do), losing ten pounds (okay I still do), saving money, and other silly things. Then I went through this whole diagnosis process. I do have to say that the first doctor that told me it was probably a brain tumor softened the blow of blindness!

I was diagnosed three months ago, and I think I was in shock. I felt fragile, really until like Christmas. Not broken or sad, but squishy and confused. At first, I could not think about anything else. Even if I was talking about something else, or doing something else, it was there, waiting for me to be alone with it. If someone would bring up something small and petty, I would have a huge averse reaction to it, once even walking away mid-conversation. It's not like I never said small and petty things (aren't we all guilty of that). I just could not process it at the time.

I feel like I am starting to breathe deeply again. Like okay, let's go. I'm healthy, I'm here, the kids are alright, we are good. My gratitude is building. I am so fortunate, for my family, for my friends, my community, and the grace of God. We are thinking okay, how should we change our lives to figure this out. That we even have the luxury to have those thoughts just blows my mind with gratitude.

I am surely no fountain of peace and acceptance, but I am feeling like I can move toward normal again, which is great, because while I was in shock, I got fat and broke. Lol!

Killed by a zhu zhu pet

I know it may happen. My son received one for his birthday. I miss those little things on the ground all the time, and this thing is just the right size with wheels to take me down for good. I can hear the women on 11 alive news already in my head, blind mother killed by a zhu zhu pet.

So when I was at the retina specialist back in October getting my final diagnosis, I was like "are you sure? I play tennis, and that is a small ball." She told me that she was amazed by what the people with RP could do, and how well they function. She told me that I already probably have coping techniques that I am not aware of, like scanning. You know, like a supermom,with super powers.....

So I started noticing the things I do, because now I know that everyone does not see the world the way that I do. I have one, that my whole family uses. I have a place for everything, and if things are out of place I take mental note of it, and can remeber where I last saw it. Nate will say "Where is my batman underwear?" I will think a minute and reply "I saw those under daddy's weight bench in the basement." Okay, why are his underwear down there? Who knows? The cool part is that I remembered it. Special powers? No, that's RP, baby.

Should I wear a scarlet letter?

I live in this in between place of not quite being a sighted person, and not quite a blind person.

So when I was first going through the initial appointments, my tennis ladies/friends all knew what was going on. It was natural and easy telling them, because they were there when it was happening.

So I met this new neighbor at the end of the pool season last year. I liked her right away, and thought we could be friends, but I got busy. Finally, I made a lunch date with her (my new years resolution was to work on friendships more). We had a nice lunch, lots of talking, and we have a lot in common. She could definitely become a friend. Do you just let it come up one day?

None of PTA mom friends know. The school doesn't know.

See you don't want people to feel sorry for you, or to be a debbie downer. But I can't see things sometime, like when people try to fist bump after a project. Or a new tennis partner tries to high five me, and I just stand there smiling like an idiot. Or there is the fact that I am a reverse vampire, and I do not drive after dark. I mean I have some pretty bizarre behaviors to accomadate myself. Like tapping towards the bottom of the staircase to make sure I am down. I used to think I was a spaz, but now I have a diagnosis to blame it on.

At some point, I will not drive at all. And carry a cane. But even then, I think I will have significant vision left. I mean you can be significantly visually impaired and still have significant sight. This is so weird. I am considering handing out disclosures to people I meet, but that might seem weird, lol.

Maybe, I will just post my blog to facebook one day.....

Night blind

So Adam and I are chit chatting late at night, nothing romantic here, stuff like "did you put carrots in the lunches." All the lights are off, and I say, "I can't see anything." He said "Of course you can't, it's pitch black. But I can kinda see your silhouette." The he draws the edge of my face with his finger. I say, "oh yeah, I see yours too." Then, I poke him in the eye.

We. laughed. so hard. He yells, "WTF, are you trying to take me with you." I have tears of squeezed giggles streaming down my face, my stomach hurt. Oh.....good times.

Bowling alleys suck

It was my youngest offsprings 7th birthday party, and we had a laser tag and bumper car party. Yes, I remember when party's were cake and ice cream and tag in the yard. I actually think that is more work for the mom, but I easily spent $250 on the party today, yuck.

Anyway, this extravaganza was at a bowling alley, arcade type place. Well, would somebody turn on the lights! I walked in from the outside and instantly I was thinking "whoa." My vision decreased by about 30 %. I am not totally night blind yet, but my vision decreases in low light areas significantly. In some ways it is kinda like a preview for me of how things will progress in the daylight, interesting.

I went into the laser tag room, not to participate, but to be the photographer. Hilarious, because I had no idea where any of the kids were! My Natie even said, "mom you should play, you would be an easy target." Little butthole.

(Aside: My daughter said something like that to me the other day, making fun of my bad vision and impending blindness. I don't remember what it was, but it was funny and clever. Then I said "Will see who gets the last laugh, this shit is genetic." We are a sarcastic family.)

Back to the party. It was fun, as fun as kids birthday parties can be, but made me wonder. I knew before I was diagnosed that I did not see well in low light situations, but now I wonder if I over notice my bad sight.

Funny things I did

I am not a punk rocker, I just kick dogs and smash glasses because I am going blind.





So before I knew what was going on, I thought that everyone saw the world the way I did, and I was just especially dingy and clutzy.


So here is a list of things that I thought were normal that were apparently an indication of my vision loss.


1. When I drop something on the ground, I think oh crap, I am never going to find that. I have to get on my hands and knees and look for elevation changes, or keep moving around to scan the whole floor.


2. When I get busy in the kitchen, I "lose" things on the counter top. Like spatulas and glasses. I break a glass a week. I often cursed my black counter tops and black spatulas, and considered buying pink spatulas.


3. I have also considered orange safety vests for my small dogs and small children that come to my house.


4. About a month before I was diagnosed, I took my youngest to the movies. As the movie ended, my sweet 6 year old said, let me help you in the dark. Then he took my arms and lead me out of the theater.


5. I have always hated 3D movies. They make me nauseous. And I like to sit as far back as possible so I could get a good view of the screen.


6. We moved to Georgia from Colorado in 2008. I thought that it was just harder to see the stars here because of the trees and cloud cover (Oh the things your mind convinces you of). Really, I can not really see stars very well anymore.


7. My night vision has always stunk, but again moving to a more suburban, rural area, I thought these roads were darker at night, then I was used to.





So really that list just seems like old lady complaints. What made me insist something was wrong was the flashy lights,that have increased to being in my vision 24/7. And the sheer number of old lady complaints I had for a 35 year old seemed unreasonable.



The crazy thing to me, is that I have always been nearsighted. I had my eyes dilated annually. I had lasik eye surgery. I went to an opthomologist, and it was not until I was at Emory that my condition was diagnosed. This eye disease is common, I mean like not super common, but 1 in 3000 common. Crazy....