In the last 24 hours

Adam is gone again this week, and the kids are cracking me up in a funny kind a way, and in a crazy kind of way...



1. Theo tells me I should try conditioner, that it will make my hair smoother.

2. Nate informs me that I packed a fork last time I gave him applesauce, and that the cafeteria only allows 1st graders one spoon per year.

3. Mary says "I thought you were an art major at some point," as I struggle to draw the outline of a human body on a poster board free hand.

4. Nate says "When I look at you I think black." huh?

5. Nate screams "I am trying to show him the pain he puts me through everyday." This explains why he was following Theo around pointing a nerf gun at him.

There are two more I was going to write, but I can't remember, because they are sucking the brain cells out of me.

I have really been perplexed about what to do about where we live, if we move, if we stay, and for how long. I think about it way too much. I unplugged today, and laid on my bed to just be quiet and let God talk to me. I woke up 2 hours later, running out to the kids' bus stop, with the lines of my sheets imprinted on my face.

I love manual labor

I love feeling productive. I love the end result. I like the feeling of accomplishing something.

Adam and I installed 24 bags of insulation into our attic yesterday. This was the perfect home improvement project for us, because he was in the attic blowing in the insulation, and I was in the garage feeding the hopper.

About 8 years ago we installed 500 square feet of tile, and it almost ended our marriage. I am let's just start already even if we don't have everything we need. He is a perfectionist with a bit of a lazy streak. We decided to not do any more collaborative projects. Ever. But when the estimate for more insulation was 2 grand, and we realized we could do it in an afternoon for $250, we put the wounds of tiling behind us.

While I was loading the hopper, I had on a mask, but the dust kept getting in my eyes. So I put on sunglasses. The glasses fogged up because of the mask. So I started thinking about people who have cataracts.

So I used this tiny little peep hole of vision through the bottom to work, and keep the dust out of my eyes. So I started thinking about my RP as it progresses.

None of these were necessarily negative thoughts, just insights. I am so grateful for where I am at. Right now. I am so grateful that this is a progressive disease that I can adjust to as time goes on. It is almost like a "hey you, live in the moment" continuous reminder.

I have always wanted to volunteer for habitat for humanity. Thinking that I would not be on a roof in retirement was the first thing that made me cry about this disease. I am thinking, there has got to be something that I can safely do for them. I am going to go check it out now, I mean why wait?

I think I may go look around the attic again this morning, check out our work, while puffing out my chest.

Yucky

So when everything first happened I started to write things down. Thank you God that I just wrote a word document and kept it to myself. I was really pissed. Not at anyone, just in general. I am sure that was really fun for the people around me.

I have the worst memory when it comes to past events and where I have met people. I think this is a blessing. Because as I was reading the things I wrote, I was thinking, this is yucky. What kind of psychopath feels this way?

Okay so this is what I am going to pray for this week:
1. To continue to be able to forget, like a goldfish in a bowl.
2. To remember that feelings pass, and
3. Not emotionally abuse my loved ones while said feelings are passing....

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.....