I had a friend once compare blindness to being like the color blue. Most people assume that a blind person is in the dark because there is a loss of eyesight. There is no dark or light when it comes to blindness, just like there is no normal or abnormal whether a person has vision or no vision. Why must the general idea be that a person must have sight to be able to succeed or compete?
As a child I identified myself as having low vision. I struggled to keep up with my peers. I aimed to please my teachers by telling them I could see when I really couldn’t. I was ashamed to identify myself as blind or with other blind people because there seemed to be such a negative stigma on the word blind. My parents never mentions the word blind. I often lived by the motto of, “Fake it till you make it.” But who was I really fooling? Everyone knew. I wasted so much time and energy trying to be like everyone else. All I really needed was someone to tell me that it was ok to be me. It’s ok to be blind.
When we all found out that my daughter has Optic Nerve Atrophy we all went through all sorts of emotions. In order to fully process we need to go through the stages of grief. But if you end up staying in one emotion or another and not fully moving on then you will never accept the fact that blindness isn’t an illness. We don’t “suffer “from Optic Nerve Atrophy, We “have” Optic Nerve Atrophy. It isn’t something to fight or feel sorry about. It is something to emrace and make beautiful.
Last weekend we spent four days at Zion National Park. Unfortunately, since we brought our dog, I spent most of the time at the campsite or on the single trail that allowed dogs so that my husband could experience some of the hikes. He took our Marley along too while her brother napped. Saying that she did great on the hikes would be an understatement. She had so much excitement and animation in her when she told me about their adventure, I just about burst with pride as I listened to her stories. On the last morning there, my husband encouraged me to do some of the hikes and he would clean and pack up camp. After going back and forth on it, I finally decided that it would be such a bummer to not have experience any of the beauty that Zion has to offer. I’m so glad I did. At the top of the first hike I had to sit in awe for some time at what I might have missed because I was afraid of hiking alone. I was afraid that I wouldn’t be able to find the shuttle stop or wouldn’t be able to find the right trails and end up on one of the longer or tougher trails. If I would have let the fear overpower my love for the outdoors, the trip would have felt like a waste of a weekend.
Yesterday I heard the same phrase in two completely different movies, “Wall-E” and ’12 Years a Slave.””I don’t want to survive! I want to live!” Surviving is so boring. All you need for survival is food and shelter. To live is to laugh, to taste, to learn, to experience, to feel, to love, to grow. This can be applied to all aspects of life. So to you I ask that instead of just doing what you know you can do, do what you are afraid that you can’t. Challenge yourself everyday, and challenge those around you to do the same.
Here are a few photos from our Zion trip. We love having fun with the self timer feature on our camera. Enjoy!
I feel like I’m in a real life game of musical chairs. First I was the blind child, then the blind student, then the blind parent, and now I’m sitting in the seat as the parent of a blind child.
This blog has been a draft in progress, and I’m finally ready to share it with you all.
About 2.5 years ago, we brought my daughter into see the pediatrician for a double ear infection. This was when it was first brought to our attention that she had a nystagmus. After a few trips to the eye doctor, we were given the diagnosis of Spasmus Nutans. This is the combination of the Nystagmus, Amblyopia (lazy eye), and a head tilt in response to the other two symptoms. We were told that this was common in eye development in toddlers and it should correct itself by school age.
Over the next 2 years it looked as if it was somewhat getting better, only showing when she was really tired or concentrating to see something at a distance. But as her fourth birthday came around, we noticed more and more signs that perhaps we were just looking for it to get better because the doctor said it would
I noticed that she was having difficulty seeing the letters in her books while we were working on reading and writing. My husband noticed she was having difficulty tracking things at a distance. Some of my close friends noticed that when she went to grab an object, it looked as if she wasn’t reaching directly for that object but more feeling for it.
I couldn’t believe I let two years go by since her last eye check up. When I called to make an appointment in January, the first available appointment wasn’t until May. This wasn’t acceptable, especially to a worried parent. After asking around, I found another ophthalmologist who came very highly recommended in my network of moms. I also decided to contact the school district to see if she would qualify to get into their preschool program, because if she would be needing any services I wanted to start the process sooner than later.
After a series of assessments with the school nurse, psychologist, vision test, and hearing test, we sat down to our first IEP (Independent Education Plan) this last Tuesday. It was determined that my daughter qualifies to start preschool under the fact that she would be a blind/low vision student. Keep in mind that we hadn’t yet seen the new eye doctor. There was much discussion about what accommodations and services she would be given As I’d expected, there was much disagreement on the topic of Braille. The low vision specialist claimed she felt my daughter has too much vision to learn Braille, that it would slow her down and confuse her. Knowing the IEP process, and knowing that I was able to ammend it if I felt need be, I simply told them that if they didn’t want to teach her Braille in preschool, that was fine with me. I am already teaching her Braille, and by the time the school district is ready to approve Braille instruction, she’ll already be fully reading uncontracted Braille, and far ahead of her peers.
A few days later, on this last Friday we visited her new eye doctor. It turns out that she doesn’t just have the three sypmtons that make up Spasmus Nutans. She’s got Optic Atrophy just like her mama. It’s very possible it was a dormant gene that appeared in me, then I passed to her. It could be that since we weighted two years without treating the Amblyopia, it caused the atrophy in the eye. It could be a fluke coincidence. However, all that matters is, she’s got the same eye condition as me. The doctor also told us that her vision loss is severe enough that Braille would be best for her. Forcing her to read print would only strain and stress her eyes thus possibly making things worse.
I’ll be honest. This weekend consisted of a whole lot of tears, a whole lot of guilt, a whole lot of grief, a whole lot of anger, but also a whole lot of of inpouring of love and support. It also consisted of a whole lot of pride. On sunday morning, I heard my daughter chatting away while she was eating her pancakes. My mommy ears perked up when I heard her say, “X is 1 3 4 6.” I then asked her to show it to me, which she did on the little wooden Braille block that we play with. She then told me that X was her favorite letter in Braille. I was overwhelmed by the comforting feeling that no matter what, everything will be fine. She is a happy, healthy, beautiful, bright, and strong little girl that will succeed in whatever her heart desires.
With my own personal experiences, with the resources and support through the National Organization of Parents of Blind Children and the National Federation of the Blind, with the love of family and friends who will treat her like every other little girl out there and not like a child that needs to be tended to or coddled, I plan to surround her with nothing but positivity and make sure that she grows up to be a confident young lady doing whatever she wants to in life.
So…to my dear sweet Marley, this song is for you, because you’re amazing just the way you are.
It almost seems too perfect. Two kids, two years apart, and to top it off, a brother for my daughter and a sister for my son. They are the best of friends and they are the worst of friends. Watching them play together when it’s just the two of them, or in a group with other kids, I see how close the two of them are.
With my brother in Georgia, my sister in Texas, and my husband’ sister in California, my children aren’t fortunate to have their cousins near by to grow up with the way I did.
Luckily, they will always have each other.
Yesterday we took the kids to see the Chinese New Year Parade at the Bellagio and the Botanical Garden and check out the Chinese New Year display. Come to fine out, the parade was the day before. Well…at lease we got a few cute photos.
OK, well titling this blog, “The End of an Era,” may seen a bit dramatic for many, but to me and I’m sure to a few of my mommy friends, I’d think it’s fitting.
Today was the last official meet up of my mommy group. I started the group in February of 2011, when my daughter was 14 months old, and before I even knew I was pregnant with my son. I can honestly say that starting this group has been one of the best decisions I’ve made. In just under three years I’ve met so many wonderful women whom I now consider like family. I’ve made friends for both myself, my children, and even my husband. I’ve gotten the opportunity to bring dozens of moms together. I am so incredibly thankful to have been a part of so many lives, sharing the joys of new babies, birthdays, careers, marriages, and new homes. Some of these women have lent me a shoulder to cry on, laughed so hard with me that we couldn’t help but cried, and used my shoulder when they needed a good cry themselves. Some of these women joined the group looking for friends for their children, and some of these women joined looking for friends for themselves. Whatever the reason, we had a great time these last few years together thanks to meetup.com.
A few of the first blogs I wrote was about how joining and starting my own mommy group brought be out of depression and isolation and made me into a more productive, happier, and healthier person. You can read them here; Part 1 and Part 2.
Unless you have been in the shoes of a stay at home mom, you won’t ever understand how isolating that can me. Throw in not having any family nearby,not being able to drive, having a husband who worked long hours (sometimes being gone days at a time), and being blind into the picture, and that’s were I was then.
Even though our lunch today was the last official meet up of the group, it was like any other get together. We all had a great time chatting about our families, the holidays, and laughing at each others’ expenses. Just because the group was over, it didn’t mean we were done with each other. I’m looking forward to seeing more babies, watching our kids grow, and many many more moms night outs.
Thank you ladies, and thank you meetup.com for being a part of our lives.
If only I had Braille when…I was a child learning how to read.
If only I had Braille when…my classes took turns reading out loud and I was skipped over because I couldn’t even read the large print books that the schools provided me.
If only I had Braille when…the waiter handed me the menu when I sat down with my friends at a restaurant.
If only I had Braille when…my kids asked me to read the signs on the trails where we were hiking.
If only I had Braille when…my son had a 102 degree fever and I had a brand new box of medicine and didn’t know the correct dosage to give him.
If only I had Braille when…I was reading the directions on the box of blueberry muffin mix.
If only I had Braille when…I wanted to read a nutrition label on a granola bar wrapper.
If only I had Braille when…my kids find a new book and want me to read it to them.
If only I had been offered Braille as a child instead of fighting to learn it as an adult.
If only Braille was as common as print.
If only all blind or visually impaired children were taught Braille so they wouldn’t have to struggle to read as adults.
Braille is something that I am very passionate about. Tonight as I was reading my children their bedtime stories, I started thinking, “If only I had Braille when…”
Did you know that only 10% of blind or visually impaired children are taught Braille?
Did you know that as a child I struggle to read large print, falling behind in school, and working twice as hard as my peers to keep up?
Did you know that I didn’t fully become literate until the age of 23 when I finally learned Braille?
What if only 10% of sighted children were taught how to read.
I have to admit, I haven’t thought about these things quite as much in the last few years. However, now that I am teaching my own daughter how to read and write, and now that I am personally transcribing many of the books that are on their bookshelves into Braille so that I can read to them because it is faster than waiting for new Braille/print books. As a child, I used to wish that I could be either completely sighted or completely blind so that I wouldn’t have to be stuck in the middle, always having to explain my so called disability.
Now all I wish for is for more Braille.
More Braille for blind children learning how to read.
Today was the first day of school for most kids in Las Vegas. Both parents and kids were full of excitement and maybe just a little bit of anxiety this morning. Alarm clocks buzzing, lunch bags and backpacks getting double checked so that nothing is forgotten, new shoes laced, tied, and double tied for plenty of playground fun, and we can’t forget about those first day photos getting posted to Instagram, Facebook , Twitter, and texted to grandparents.
But none of that happened here in our house. The kids and I slept in until 8:30am. My husband and I enjoyed a big breakfast and coffee out on the patio while the kids ran around in their bathing suits splashing in the rain and the kiddy pool water slide. Now Jackson is napping, Marley is watching Mickey Mouse Clubhouse, hubby working in the garage, and I’m cranking out this blog.
Why isn’t Marley starting school today? Well…here’s what I told my next door neighbor when she asked me this morning.
Marley is still only three, and not turning four until November. This means she won’t be starting Kindergarten until fall of 2015 because of the age cut off here in Nevada. As a stay at home mom, I don’t think it is necessary to send her to two years of preschool. We spend a few hours each day working on preschool activities, and also incorporate learning into everything we do; from trips to the grocery store, gardening in the backyard, or strolls through the park. I run a neighborhood mommy meet up group so the kids get plenty of socialization. My husband’s work schedule gives him quite a bit of time home, making it easy for us to go camping, hiking, to museums, visit local orchards and farms, and take countless road trips exposing the kids to hands on learning opportunities like our upcoming trip to the Astronomy Festival at Great Basin National Park. We are even giving a little bit of thought about homeschooling our kids completely.
I go back and forth on homeschooling. There are so many pros and cons to consider. As a blind parent I will definitely have a few more challenges with home schooling than a sighted parent. I can’t read handwriting, so I will have a tough time teaching my kids how to write. I am not very tech savvy, and a lot of the curriculum comes from online sources, including PDF format which aren’t screen reader friendly. However, homeschooling would mean we would have more control over our children’s education. Nevada has one of the worst public school systems in the nation. We can continue to incorporate learning in our frequent family trips. We won’t need to worry about things like bullying, unhealthy school lunches, transportation, etc. Like I said, so many pros and cons.
So for the next two years, at least until I need to make a decision about Kindergarten, my kids will be getting their education here at home. I’ll talk to more parents who have chosen to homeschool and do the research so that we can make the best decision for our family. For the next two years we won’t need to worry about alarm clocks on Monday morning delegating the start of another week. I am going to suck up every moment of our family quality time. Whether those moments may be adorable, annoying, or aggravating, they’ll be gone before I no it.
I can tell you the last three times that I’ve worn make up. Last night, at a friend’s wedding where I was a bridesmaid in 2008, and at my own wedding in 2007. I haven’t owned any make up since 2007, and since my daughter destroyed the last of my shimmery lipgloss a few months ago, I haven’t bothered to replace it. I always used the excuse that I don’t like to wear make up because I don’t need it. Yes, that is partly true. I rather do hate the way it feels on my skin. However the main reason is that I’ve never truly felt comfortable with applying it. Crazy since I love all other things girly like clothes, shoes, purses, and jewelry, that I can’t even apply my own make up.
Here’s a great candid from my wedding of me and two of my best gal pals, Yolanda and LM. These are two very confident and beautiful blind women.
I know plenty of blind women who wear make up daily. I’ve been part of plenty of seminars teaching blind youth about beauty tricks and tips. but when it comes down to it, I am 30 years old and I can’t even put on my own make up. Don’t think that this is an, “Oh poor me, pity party,” blog post. This is more of a self admission of the truth. Why should I let this bother me and make me feel any less feminine?
That’s me in the same outfit I wore last night, but this was last January with my friends Deja and Jessica, also two stylish blind bloggers.
This weekend I had one of my oldest and dearest friends in town and my husband and I join her and her friends for dinner and dancing. I decided to wear my fit and flare snake skin print dress from Express, black peep toe Maryjane pumps, a thin black belt, my black coral necklace I bought in Hawaii, and dangly silver and black earrings. Something seemed to be missing. Especially if I was going the Hakkasan Nightclub, supposedly the “It” club of the season. I thought about leaving early and stopping at Sephora or Mac for a little makeover and picking up some basics, but that would mean leaving the baby sitter would need to arrive earlier, and we already planned to have her for ten hours with the kids. So I sucked up my pride and asked a good friend if she wouldn’t mind stopping by to help me out with my make up. She did an incredible job.
There I am with hubby all done up before heading out to Las Vegas Blvd for the night.
Now that I am 30. my skin isn’t as great as it used to be. The dry climate has perpetuated a constant cycle of dry/oily skin. I think it’s time I start looking into doing a little bit more for my face. And for those evenings where I want to get dressed up and look just a little bit glamorous, maybe it’s time I invest in some basic essentials in the make up department.
On a recent Time Magazine cover, there is a controversial photo of a happy couple laying on the beach. Above them it says, “The Childfree Life, when having it all means not having children.”
My husband and I had a lengthy discussion about this yesterday on the way to hang out on the Las Vegas Strip with some friends, who happen to be a child free couple.
At the hotel pool as we happily splashed with our kids, there were plenty of child free couples laying on the loungers reading or sipping cocktails. It made me wonder, who really is the happier couple?
While I’d rather not be woken up in the middle of the night by my daughter’s screams caused by her night terrors, and this morning while both kids emptied everything from my DoTerra lavender oil, band aids, Neosporin, and all the rest of the contents of my first aid bag onto themselves because they were playing doctor. I still wouldn’t trade this life for a million trillion dollars.
At 107 pounds, I am nowhere near fat. I just tried on my wedding dress and it is looser on me now than when I wore it over 6 years ago. I have gone from a size 6 to a size 2 in pants, and from a M to XS in dresses and shirts.
So, why is my daughter calling me fat?
Well…it’s because she heard me use the F word. After a delicious meal I’d say, “Oh…I feel so fat.” Or I might say things like, “I’m so fat in this.”
Raising children in a city like Las Vegas, where you are bombarded with billboards of strip clubs, pool parties on the Boulevard, bikini parades, and where most women pay $$$$ so they can look like Holly Madison isn’t like raising children in other cities. Where body image is everything, and obesity is now a national epidemic, I feel like I need to take extra care of how I portray a beautiful body to my daughter. Beauty isn’t about having a small waist or big bust. Beauty is about being healthy.
I haven’t lost all that weight with any crazy diet or work out regime. We’ve simply taken on a clean and healthy active life style. I love food as much as the next person. I’ve even been told that I eat like a man. Give me a bacon cheese burger and fries, and I’ll clean my plate and wash it down with a beer. Cutting out processed foods, refined sugars, family walks, and even goofy family dance parties to break a sweat are just an example of what I mean by a clean and healthy active lifestyle.
So, the next time my stomach is about to burst from a delicious meal, I’ll think twice before using the F word.
Blind Mom in the Burbs 