Monday, April 4, 2011
This morning, I started looking to make a plan for the house. I realized the only true way to clean and de-clutter is to lose these three children. Life with a family is messy. There are bits of things everywhere. There is artwork hanging on expensive furniture. I have a paper mache volcano on a cake plate sitting next to a water frog that is way past his expiration date. Controlled chaos.
I wouldn't trade it. I can have a perfect house when the kids are gone. But for now I am going to use this house up, enjoy our lives, and go bike riding instead of spring cleaning.
Saturday, April 2, 2011
Blind mothering fits in so many ways. I am a fly by the seat of my pants kinda gal, so there's that. I have great kids, so I am really glad it is working out so far. hehe.
So, I have been working on my attitude toward marriage and my husband lately. I was listening to some talks on love and marriage, and thought I would try. So here is the basics:
1. Love one another - like actively, do loving things, kindness, respect, compassion. See I am a bit dark and kinda a jokster, so this is hard for me. Apparently sarcasm is not the way to true intimacy.
2. Submit - Have a servants heart. This is not sexist. Both of us should feel this way. I think the best way this was summed up for me was - Choose the relationship over self interest. Again, this is hard. I want to make sure I am not submitting more than him. I have a healthy fear of not getting out what I put in, so I am always in negotiations.
3. Don't Compete - For me this is about being right. Not just being right but having Adam tell me I am right, why I am right, and why he is wrong, wrong, wrong...
4. Be interested in their interests. Apparently, I suck at relationships, because I find this hard as well. Adam was travelling for work through parts of western Europe. He was sending me emails about castles and countrysides. He was truely excited. I was up to my elbows in throw-up and school projects. I actually asked him to stop sending me the email updates. I am not a grown up.
Really the difference is amazing. I just decided to try this new perspective and attitude. Honestly, I like myself better. And when I see old Melissa in a relationship, I am like eww. But at least now I know what I am striving for.
Thursday, March 24, 2011
I am feeling so much better it is ridiculous. I am about 6 months away from diagnosis. I knew I would feel better, adapt, and regain hope. I kept telling myself that, but then I would tell myself to shut up. There is no speeding up time, I just had to get through it, and it hurt. I can make myself cry again, thinking of the pain. Yet, I truly feel like the darkest days are past. It is amazing the way family and friends rally me, hold me up.
Okay, too mushy. moving on.
I have a bull horn. I got it for Christmas from my brother in law. See we all draw names, he got me, and he thought bull horn. At first, I was offended, deeply. This is no normal gift exchange. See my husbands family is so competitive, that after all the grown children exchange, my mother-in-law judges who gave the best gift. She thought the bull horn was the best. Again, I was offended deeply. She knew I was irritated by the present and she twisted the knife by picking it as the winner.
Well, I love that bull-horn. I can stand at the top of the stairs to the basement and call the kids up for dinner. I can call them in from playing. The neighbors think its hilarious ( at least that is what they tell me). I have brought mothering to an all new low. Imagine a woman in slippers, standing on her back deck, calling her children through a bull horn. I am no longer offended, I am in love.
Wednesday, March 9, 2011
Tuesday, March 1, 2011
The last couple of weeks has been difficult. I have repetitive obsessive thoughts about the future. The thing is, I know better. I have been in therapy before, I worked in the field of helping, and I have read countless books on personal and spiritual growth. And I feel like a total loser.
I mean really, who doesn't know better. Anyone will tell you to focus on your gratitude, your abilities, your blessings, and I am struggling.
So, I made a to do list. Sometimes, just plowin through', getting things done, and having an outward focus brings me back level.
Here is the list:
Write a blog entry - done
Call the new tumbling place for Mary
Email class about carnival baskets
Call Joanne's about a sewing class
Look at the parks and rec book for a spring Art class
Get supplies for bake sale
Go to coffee with friends
I gotta fight. I can't just lay down in this. So I am off to put on my shoes and earrings and hit the day.
Monday, February 21, 2011
Sunday, February 13, 2011
Wednesday, February 9, 2011
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.
Sunday, February 6, 2011
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.
Thursday, February 3, 2011
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....
Monday, January 31, 2011
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.
Tuesday, January 25, 2011
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!
Friday, January 21, 2011
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.
Thursday, January 20, 2011
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.....
Wednesday, January 19, 2011
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.
Monday, January 17, 2011
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.
Sunday, January 16, 2011
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....
Saturday, January 15, 2011
I am just about paralyzed thinking about what the next move for our family should be. I know that I have to stop driving at some point in the not too distant future. If only I knew when.... I really want to be as independent as possible. Our current house is not walkable.
There is this awesome website about the walkabilty of your address, 90-100 is a walker's paradise. My house is a 16.
Here are my options
Stay in the same house options:
1. Become a shut in, grow our my leg hair and fingernails.
2. Hire a driver on occasion that I need it. I am thinking like a fellow housewife, who is in need or want of extra money. In addition, I can send emails out to about 10 neighbor friends to find out whem they are going to the grocery stores and ask for rides.
Move to a different house, same schools.
3. Pay a butt load of money and break even on our current house to move to a neighborhood that is more like a 50 out of 100. Easy walk to schools, moderate walk to grocery and bus stop.
New schools - Kinda sucks for the kids
4. Stay in our current city, but go much more urban. Further commute for DH, but totally walkable. Walk score in the 80s-90s.
5. Stay in our current city, the kids would have new schools, but could stick with same sports and stuff, walk score about 60.
Leave Atlanta. Move to a totally walkers paradise, near my sister and parents. The thing is, they live in Phoenix area,not really a walkers paradise, but we could find an area with a walk score in the 70s. So this fantasy does not exist in this dimension.
Confused? I am. Totally. I have no idea what to do. I hate how much brain space this takes up. I hate thinking about this all the time. My indecision and is driving my husband completely bananas. My friend says stop thinking about it and let the answer come to you, that I am fighting to hard. Ugh...
What I know is that by the time I was diagnosed with it the retina specialist thinks I am under 5-10 years from being legally blind. How did she make this decision? Well, she guessed. Because the disease is different in everyone. It progresses at different rates, and it progresses to different levels of severity. Very few, become totally blind, about 4-5%. Most are legally blind by 40.
Basically your peripheral vision closes in and you have "tunnel vision." Think looking through a straw. Also night blindness is one of the first indicators of the disease. In the late stages of the disease, it can effect your central vision.
Just to clear this up. Legally blind means, legally blind even after correction and surgery. So you and your brother are not legally blind, unless you are legally blind with your glasses and after your cataract surgery. Man, that sounded grumpy. Maybe it's cocktail time!
Mary is 13. She is stunning, fairly smart, and total trouble. She is a 7 year old in the body of a 21 year old. She is sweet as honey, academically very smart, but would probably take a ride from a stranger, and definitely candy. She loves and hates her mother.
Mary was born when Adam and I were in college. I had just turned 22, and had this amazing, purple,bald, pimply beautiful child. We were great parents, especially considering, we were total idiots.
Theo was born 2 and half years later. A little boy, a sweet squishy little boy. He did not speak until he was almost three and then with issues. We never would have named him Theo, if we would have known he couldn't say it until he was like 8. No worries apparently "Phil" was very well liked on the playground. He is 10 now, and very bright, super mellow, and he adores sports.
Nate is our baby. The smartest of all of them, which is a good thing, because I think he is going to be super short, and he will have a witty sense of humor about it. He just turned 7 the other day. I told him to live it up on his last day of being 6, because 7 year olds have to pick up dog poop. You know that little rascal took that as an invitation to streak the neighborhood, too bad I caught him in time.
So, I have no idea if the kids will inherit my RP, Retinitis Pigmentosa. It is hereditary, but I have zero known family history. I have begun the process to have them seen by an opthomologist and will keep the blog updated. It stresses me out to think that they may have this, but they will still be the unique individuals that they are, and I know they are going to be great. I mean really really great.
"I am sick of all these sparkly flashers, Adam. And what the heck, I am only 35, and I can't see anything at night!" "Hmm" shrugged Adam. "That's it, Adam. I am getting my eyes checked out and this time I am not stopping until they figure out what's wrong." "Good" shrugged Adam.
Okay, so I have always kind of seen fireworks, auras of light, sparkly things, when I closed my eyes at night for bed. I remember this from childhood.
I had lasik eye surgery in 2005. There was a battery of tests before surgery. One was a peripheral eye test. The young woman said, "push the button when you see the squiggly" I said, "Lady, I see squigglies all the time. I have no idea what you are talking about." She said ,"Oh forget it, this test must not work on you."
Well, as I aged the flashing lights became much worse, and then it was hard to navigate at night, walking mostly. We would go to friends houses, then maybe have a drink, and I was tripping on curbs and what not. I thought, man, I am a light weight. Next, we moved to Georgia in 2008. We live in a part of Georgia that is in the burbs and has lots of neighboring rural areas. I was pertrified to drive at night. I could not see shit.
In the summer of 2010, I had enough and made an appointment with an opthomologist. He told me that it was nothing but particles in my vitreous solution and not to worry. However he wanted me to come back for one more test. A visual field test. He saw the results and said it seemed that I may have a tumor on my pituitary gland, and he sent me to a neuro-opthomologist specialist. In the month waiting for my appointment, I wrote letters to my children in my head, trying to think of ways to tell them I loved them on their graduation/wedding/coming out party/whatever, and not depress them with thoughts of their dead mother.
I went to Emory in Atlanta. I saw the neuro-opthomoligist. She said you don't have a brain tumor dummy! Your just going blind! Whoo-hoo! I am not dying! Three weeks later...Oh crap, I am going blind. I had the final test (an ERG) to confirm the diagnosis, and I saw a retina specialist. And yes, I am going blind, and have been probably since birth.