Archive | Story RSS feed for this section

Don’t Go And Get Coffee While Your Child Is In Surgery

5 Mar

If you can’t laugh at yourself, nothing else seems very funny. -me

As soon as the nurse’s walked out of the doorway carrying Oli, I began to cry. Some of the tears were shed from fear. That irrational fear that I would never see her again. Fear that the audiologist would walk back into the room and tell me that her hearing on the right was lost. Fear that she felt alone and scared. Some of the tears were shed because I was just sad because she is so young and has been through so much. No child should have to go through the things that Oli has had to go through. And the rest of the tears were shed because I am a mother. What mother wouldn’t cry if her child has surgery? What mother doesn’t cry when their child has anything that she can’t fix herself?

I waited in the pre-op room until the ENT came back to talk to me about his recommendations for putting tubes in her ears. He walked back into the room about 20 minutes later.

“She does not need tubes in her ears again at this time. They were perfectly clear. No sign of infection and no fluid. I was surprised. I’ll keep a close eye on them and we’ll see if they stay clear.”

I was surprised too! Usually when she has a runny nose and goopy eyes (which is did that morning) she also has fluid in her ears. I thanked him for his time and gathered my things to go wait in the surgery waiting room until they called me for the results of the hearing screen.

I walked back out to sit in those very uncomfortable waiting room chairs. Who designs these waiting rooms? It’s like they said, “What kind of chairs should we put in here? We know that these parents are nervous, afraid, and will be unable to sit still while they wait for hours for their child to get out of surgery. You know what would be the best idea for chairs in here? Hard, plastic ones with a thin vinyl covering with just enough padding to avoid bruising and corporate complaints. Why make this process any easier by providing sufficient butt comfort? Oh… and let’s put a few gazillion gallon fish tanks in here. Who isn’t comforted by Nemo and Dory? And make sure to build the cafeteria at least 5 miles from here. It’ll give them something to do.”

“Sounds like a great idea Bob! I have one more! Make sure the person at the information desk is at least 100 years old, has no idea where anything is located and can’t work the computer or the phone. Parents will think that’s hilarious and won’t be at all frustrated or annoyed.”

Before the ENT left the room and sent me to this wonderful waiting area he said that the audiologist would come find me in the waiting room sometime between 1 hour and next Tuesday to tell me the results of the ABR. They gave me this little blue pager that was supposed to light up and vibrate when Oli was done. I had to keep it with me just in case they couldn’t get a hold of me by my cell phone. I really wanted to go get a cup of coffee, but I hated the thought leaving the waiting room. What if the little blue pager only works within a certain distance from the surgery area? I doubted it would work 5 miles away and in an underground cave-like area, which is where the cafeteria was located. I seriously doubted that my cell phone would work there either. My cell phone only works half the time, above ground in my apartment.

I spent the next 10 minutes having an inner debate about coffee.

Did I really need it? My butt was really starting to hurt already. Maybe a little stroll would take my mind off imaginary surgical catastrophe situations. No, I can’t go. What if Oli needs me? What if the pager and the cell phone fail and something happens that requires the one thing that no nurse, doctor, tech, therapists, specialist, aide, helper, or 100 year old woman can help with. What if it can only be fixed by my immediate action or Oli will die? I don’t need coffee that bad. Wait…that would never happen. Oli’s fine and in good hands. I will only be gone a little while.

I decide to make a go of it and fast-walked my way out of the waiting room. My pager and cell phone were clutched tightly in one hand. A few weeks later I stumbled back into the waiting room, pager and cell phone non-vibrating, lit, or ringing. I sat down and glanced at the brown card attached to the pager. It was directions on how to use the pager. Aaaaa….I had been in enough restaurants (pre-children) to know how to use one. I didn’t bother reading the card when they gave me the thing. I read it now.

________Do not place pager and cell phone in direct contact. The pager may not work properly if this happens._____________

What?!

I was holding onto them both in the same hand!

Oh My God!! Something terrible has happened and I was GETTING F****** COFFEE IN EGYPT!!

I rushed the old lady at the information desk.

“My daughter Oli is in surgery. I went to go get coffee and I had my cell phone and the pager on me, but I didn’t know that I wasn’t supposed to put them in the same place because I didn’t read the card because, you know, I thought I knew how to work one, but then I got back and I read the little card and now I think you probably definitely tried to get a hold of me but my cell phone doesn’t work very well and of course the pager didn’t work because I had it in THE SAME FLIPPIN’ HAND AS MY CELL PHONE, STOP LOOKING AT ME LIKE I HAVE LOST MY MIND AND TELL ME MY DAUGHTER IS OKAY!!”

Of course I didn’t really say any of this. They might not let me take Oli home with me. I steadied my trembling hands, took a deep breath, and said “Can you tell me if Oliana is out of surgery yet?”

Tags: , , , , , , , , ,

Is She Afraid?

4 Mar

I can only imagine that preparing a typical child for surgery is difficult for any mother. Trying to explain something about hospitals, doctors, sleepy medicine, discomfort, and recovery time to a 5 year old must be like trying to explain Japanese to someone who has never heard of Japan.

I have never had to do it. Oli is the only one of my children, so far, (I have a sneaky suspicion that Ginger will one day break something doing her karate, dance, acrobats off the furniture) that has spent any significant amount of time in the hospital.

This last October, Kekoa fell off of his bike and required a few stitches. However minor it seemed to everyone else, it was traumatic for him. He was really scared on the drive there. He wanted to know exactly what they would do, exactly how much it would hurt, and exactly who would be fixing him. He wanted to know what would happen if they couldn’t fix his cut? What would happen if it hurt too bad? (Worst case scenarios. I wonder where he gets this?) He needed all of the information and was not so thrilled about trusting someone he didn’t know to make him better. Up to that point, I had always done that.

“Why can’t you just fix it mommy?” He asked me that multiple times on the drive there. I told him that the cut was just a little too deep for mommy to fix. I talked to him about the nurses and the hospital room where it would happen. I told him that they would put some numbing medicine on it and that it probably wouldn’t hurt too badly. I told him that I would be right there with him the whole time.

Despite all of these conversations and words of comfort, he was really scared and nervous. Until we met a boy a little bit older than him in the ER waiting room that had gotten stitches a few months before. He told Kekoa all about it and assured him that it was no big deal and that it didn’t hurt. He immediately looked at me with relief in his eyes and said “See mom. It’s no big deal. I’ll be fine.”

I could only smile and thank that little boy for providing the comfort for my child that I just couldn’t seem to give him.

As I walked Oli into that same hospital on Friday morning I wished that someone could provide Oli with that. Despite talking to her in the waiting room, telling her we were there to see a doctor, and explaining what we were doing step by step, I still wondered if she felt afraid. It’s hard to explain a concept like surgery to Oli. I don’t know any other way besides just talking about it like I talked about stitches to Kekoa. When the nurse took her temperature, her blood pressure, listened to her heart and then had her change into a hospital gown, I just talked her through it.

But does she understand what is happening? Does she think we are at her pediatrician’s office, her neurologist, or another specialist? Does she notice that a hospital smells different than a physician’s office? Does she think that someone is going to hurt her eyes? The last time she had surgery she had an implant put in her eye. This was a painful surgery. Does she think that I am doing this to her? She’s always pretty mad afterwards. What does she think when I hand her off to a stranger and don’t go with her? Is she scared? Does she think that I’m not there for her?

I don’t know. It worries me more and more as she gets older. I think that she understands a lot and I talk to her like she does. The nurse did give her a sedative before they took her back. I’m sure it helps because I assume that she is scared just like any other child would be.

A child life specialist came into her room before the procedure and asked what would help her not to be afraid. I just said “Talk to her. Talk. Talk. Talk. Tell her everything. Tell her your name. Tell her before you touch her and tell her exactly what you are doing before she goes to sleep.” I told this to everyone who walked into her room that morning. Both the doctors, 4 different nurses, the audiologist, the student audiologist, and the child life specialist.

When it was time to take her back to the operating room she was fairly sedated and had a glazed look on her face. I gave her a kiss, told her that I loved her and that I would be there when she woke up. I handed my precious girl to the OR nurse who carried her away and prayed that God would go with her. I prayed that she understood what was happening and that she wasn’t scared. I prayed that they would quickly get her off to sleep so that if she was scared, she wasn’t for very long.

This not knowing…not knowing what she is feeling…is the absolute hardest part of being Oli’s mom. It’s so hard not knowing just what she understands.

Tags: , , , , , , , ,

Fine-Garbage, Happy-Lie Vomit

3 Mar

When I reread my old blog sometimes it strikes me as funny and sometimes it just strikes me as sad. I think I honestly believed all of the things I wrote back then. I believed that Oli was learning to walk and talk. I believed that it was still possible for her to just one day catch up to other children her age. Even though by the time she was 2 it was clear that she would not.

I was probably moving into denial at that point. I bounced around the first 3 stages of grief frequently in the beginning of Oli’s life. One moment I would be in denial and isolation and the next I would be angry. And then I would move into bargaining only to be swung back into denial. Most frequently I found myself in depression. Only recently have I moved on to acceptance and haven’t looked back since.

I didn’t know any of this then though. I didn’t consciously realize that I was grieving and nobody told me.

I thought maybe I just had bad coping skills (which I did) or that I was a bad person and a bad mother.

To combat my inner feelings of inadequacy, I told the world that everything was amazing. I tried to convince them that this was my lot in life and I whole heartily embraced it and was moving forward. I tried to convince you so maybe I would begin to convince myself. I thought that the more I tried to sell everyone on my fineness, the more fine I would eventually become.

It didn’t work out that way at all. The more I lied and faked happiness the more alone and miserable I became. By not letting anyone in, I isolated myself so deeply that I became entrenched in the quicksand of grief. Every move I made and word I spoke sucked me down and eventually had me suffocating on my own fine-garbage, happy-lie vomit.

As I move forward and continue my story I have to read the old blog to A.) remember what the hell happened 3 years ago because so much has happened since and B.) because it reminds me of that grieving process and I can clearly see it now in my writing. I can read a post from back then and see: lies, hope, sadness, fear, optimism, bargaining, pain, denial, anger, and a sense of being lost.

The one thing I don’t see in any of the old posts are real, genuine feelings. I see a bunch of words on a computer screen attempting to fool the world into believing that I was okay.

In the history of humanity, there was probably no bigger untruth.

Tags: , , , , , , , , ,

I Choose To Call It “Helpfulness”

1 Mar

“No one is ever quite ready; everyone is always caught off guard. Parenthood chooses you. And you open your eyes, look at what you’ve got, say “Oh, my gosh,” and recognize that of all the balls there ever were, this is the one you should not drop. It’s not a question of choice.”

― Marisa de los Santos, Love Walked In

All I have to say today is: Good thing I started a blog when Oli was born and updated it a few times because I have forgotten half of the things that Oli did between the ages of 1 and 2. Stress induced amnesia? Sleep deprivation?

She started talking around the age of 2. She had about 15-20 words back then. She only said one word at a time except on one occasion where she used two. I guess this happened?.. because I blogged about it. True to my absent minded, fog clogged brain self I didn’t mention in the post what that two word sentence was. I have no idea now. That sucks…

She used to say the beginning or the end of a word. For milk she would say “ka” and later “ilk”. For drink she would say “dri”. She did say mamma all the time. It started as “ma-ma-ma” and later became “mom-mom”. Always strung together.

Maybe she got it from Kekoa? That boy never said my name just once and still doesn’t. It’s always “Mom. Mom. Mom. Mom. Mom.” It doesn’t matter if I answer right away or not. Of course I tell him he sounds like a broken record. Apparently I am no longer allowed to use this terminology with children, per the husband. He told me yesterday “People under the age of 25 have no idea what that even means. You can’t say record, tape, VHS…”

I can say it as long as I want. I can even yell it into a phone and then slam down the receiver!

When did I become old?

What was I talking about?….

Oh yeah, Oli. The main character in my story.

She also started learning to walk around this age. Not walk- walk, but Oli walk which started with me holding her up and moving her legs in a walking like motion.

So…basically it was just me, puppeteering her around the room.

I guess now that I think about it, it was ALL me.

I should describe this part instead of Oli learning to walk as Mommy forcing Oli to learn to walk. I was so impatient. Instead of waiting for the poor girl to do things at her own pace and in her own time I would impose my “helpfulness” on her.

I can only imagine what Oli is thinking when I set out to help her learn something new. Walking… talking… perhaps braille reading?

“Really mom? Why don’t you just go ahead and do that by yourself and come on back down to earth when you’re done. I’ll be here waiting in the land of reality when you get back.”

I chose to pretend that I helped her learn to walk.

Okay, really I didn’t. But I tried. I tried for almost 2 years. When Oli was ready to walk she did. When she was 3 and a half. Despite my deceptive attempts to tell people she was learning to when she was 20 months old. Who did I think I was fooling? If you came over to my house and saw me hunched over, carrying my 2yr old with just her feet dragging on the floor, would you have been convinced that she was walking?

“Look World! I am a genius! I give you—-Oli’s first steps! Just pretend you don’t see me here doing everything for her.”

I can’t help but laugh at my faked enthusiasm, my I-rock-at-this-parent-thing attitude and blatant foolery in my old blog posts.

imagesCATL3XV6

Tags: , , , , , , , , , , ,

The Night Was My Enemy

1 Mar

“Sometimes the hardest part isn’t letting go but rather learning to start over.”

― Nicole Sobon, Program 13

I called Oli’s doctor and told her our decision to try Melatonin. She suggested that we start at 3mg and see if it helps. The first night I gave it to her I was so hopeful that she would begin a normal sleep pattern. I crushed up the pill and mixed it in some applesauce at bedtime. As Oli closed her eyes I whispered a little made up song in her ear.

“Sleep sweet Oli. Sleep tonight. Sleep sweet Oli until it’s light.”

It worked!! For the first time in months she slept through the night. I would like to credit my little song and the mystical powers of my voice, but there was a reason I was whispering it to her and not singing it.

Melatonin was now my best friend.

It was wonderful seeing what regular sleep did for her. She had more energy, ate better, and put on some weight. She finally weighed 20lbs at 20 months old.

It helped me tremendously too.

Before we tried Melatonin I would occasionally have anxiety attacks when darkness fell. I worried every night about how many hours of sleep I would get. Was I going to be able to function at work the next day? If I was staying at home the following day I worried that my temper would be short and that I would be too exhausted to do anything productive with the kids.

The night was my enemy. It held all of my fears, inadequacies, demons, unfulfilled dreams and unanswered questions. It made me feel weak and useless. I would hold my playful baby in my arms at 2am and silently cry so she couldn’t hear my anguish. I would turn my head so my tears wouldn’t fall on her face. And I would pray in the dark. I prayed and prayed for peace. I prayed for comfort and then I would wrap her up in her blanket and hold her tightly to my heart. Oli’s link to my heart and the complete love I felt for her was the only tether I had binding me to this life. This place and my role as a mother. I held onto her and gave this tiny person the power to hold me down and keep me from floating away.

Once she started sleeping it lifted some of those anxieties from my shoulders and allowed me to take a much needed deep breath. I actually took deep breath.

I hadn’t done that in a very long time.

Tags: , , , , , , , , , ,

Was The Sandman Hiding In A Bottle Of Melatonin?

27 Feb

Taking ‘naps’ sounds so childish…I prefer to call them ‘horizontal life pauses.’- Unknown quotes

When Oli was 18 months old I crumbled under her terrorist acts of sleep deprivation and gave her a magical pill called melatonin. I had been hearing about this over-the-counter medication for months, but had been previously reluctant to try it. The only medicine I had given her before was Tylenol, Prevacid for her reflux and a low dose antibiotic to prevent kidney infections caused by her kidney reflux. I was scared to give my baby anything not approved by the FDA. Which like most supplements, it isn’t.

I was also apprehensive because I had read and heard mixed opinions about the use of it in children. Although no one came right out and said “If you give your child this medicine it will harm her.” I had read that its use was too new for studies on its possible long term implications to be available. So essentially I heard “If you give your child this it may harm her.” That was an enormous and terrifying maybe.

That was why it took me an entire year before agreeing to try it.

Eventually I came across articles like this:

“Studies of melatonin use in children have shown it could reduce the amount of time it takes to fall asleep and increase the duration of sleep in children with mental retardation, autism, psychiatric disorders, visual impairment, or epilepsy.”—-from cbsnews.com

At this point I didn’t know that she was autistic. She was too young for psychiatric disorders and did not have epilepsy yet. She was blind and could possibly have MR. That was enough for me to start looking more closely at reasons to try it.

(Did I mention that it had been a whole year since the elusive Sand Man had made regular house calls to Pahrump?)

imagesCA41DURJ

And I began to realize the very big importance of a very tiny gland that Oli just happened to be missing.

So I began researching articles like these: taken from Wikipedia

“Circadian rhythm

In humans, melatonin is produced by the pineal gland, a small endocrine gland[26] located in the center of the brain but outside the blood–brain barrier. The melatonin signal forms part of the system that regulates the sleep-wake cycle by chemically causing drowsiness and lowering the body temperature, but it is the central nervous system (specifically the suprachiasmatic nuclei, or SCN)[26] that controls the daily cycle in most components of the paracrine and endocrine systems[27][28] rather than the melatonin signal (as was once postulated).”

That was clincher for me. If she doesn’t have the gland that produces melatonin and she doesn’t have any light perception to help create a sleep-wake-cycle then how in the hell was she ever going to sleep without some kind of help?

Once that realization finally sunk in I jumped into my car and raced my stressed, sleep deprived, pajama clad butt to Walgreens. Like a woman on a mission I shoved aside little old ladies and received snooty stares from well rested patrons. Oblivious to the rest of the customers in the store I made me way to the supplement section and grabbed two bottles. My savior came in a little green bottle with a yellow lid.

I immediately encountered an unforeseen problem. There were two doses available at Walgreens. One that was 3mg and one that was 5mg. How much do you give an 18 month old? I had discussed trying Melatonin with her doctors, but we had never finalized the decision so we never talked about dosage. I took them both to the register feeling severely deflated. I wasn’t going to be able to try it tonight.

I paid for my purchase and climbed reluctantly back into my car.

Another long night was waiting for me…

Tags: , , , , , , ,

I Didn’t Sleep In 2008

26 Feb

Everyone should have kids. They are the greatest joy in the world. But they are also terrorists. You’ll realize this as soon as they are born and they start using sleep deprivation to break you.
-Ray Romano quotes

By the time my mom moved in with me in April of 2008 I think I had been slowly losing my mind.

True, it was partly because of my complete submersion into Oli-land and lack of full emotional participation in anything other than blind baby support. It was also due to a familiar term recognized world wide by new parents. And talked about, dreaded, cursed, and feared by the blind community.

Sleep deprivation.

When my girl was 6 months old she just simply stopped sleeping.

She was on her own little planet where there was no 24 hour day. Sometimes her day was 20 hours, sometimes it was 27 hours. There was absolutely no sleep schedule. She would go to bed at 7pm get up at 1am, be up until 9am, go back to sleep until 2pm, get up and stay up until 12am, sleep until 4am. . .every single day was different.

When I went to work with bags under my eyes, mismatched socks, and had forgotten to run a brush through my hair, the new moms in the unit would spot me across the room like a bug drawn to a light. They knew what I was suffering from and they were always ready to inundate me with solutions to Oli’s sleep problem.

“Put her to bed at the same time every night. Make sure she’s had enough to eat. Bath her with this soap and then apply this lotion. Play this song before bedtime…” The list goes on and on.

I listened and I tried anything anyone ever suggested to me. Nothing worked. The only thing I refused to try was putting a dab of alcohol in her bottle at night. But that may have simply been because I didn’t want to share and needed every last drop.

I read books on sleep, googled sleep solutions for blind babies, talked with other parents of blind children, asked her pediatrician, doctors who worked in my unit, and random strangers at the grocery store who looked just like me. A soundly sleeping infant in a car seat and a mother looking like she had just returned from war, hadn’t eaten in a week, showered in 2, or slept for 3. We would bond in the frozen foods section describing last nights battle in which our child always defeated us. Granted, their baby was only a month old and mine was turning one year.

Eventually by the time my mom arrived I had just given up.

I was totally convinced that Oli was never going to sleep again.

Tags: , , , , , , ,

Flies, Trash, and Dead Bodies

25 Feb

“Like a corpse left in a garbage dumpster in the middle of summer.” -Sin City quotes

Right around the time that Oli turned 1 and got her first pair of prosthetic eyes, my mom moved in with me to help with the kids.

Which means she moved to the town of. . .Pahrump.

I wish I could tell you that it was a quaint little cozy city with white picket fences and the scent of fresh flowers in the air.

It was more like a city from Stephen King’s book Desperation with trailers sporting rotting sideboard and the scent of dead bodies in the air.

When we moved there we were sold on the idea of Parump becoming an up and coming city. With the housing prices sky rocketing in Vegas, we thought it would be an excellent idea to purchase a house in another town and wait for their market to increase. We thought there would be an influx of buyers recognizing the beauty and the quiet peace of living in the middle of the desert.

At least. . .this is what my realtor told me.

“Buy here! Buy now! You won’t regret it when your house doubles in value in a year!”

It didn’t work out quite like that.

Apparently everyone else spotted what I missed when touring Pahrump. The poverty, high rate of meth use, decaying landscape, trash, and a disturbing amount of flies. I guess the fact that Sherry’s Ranch was just down the road didn’t encourage families to move there either. Yes, this is a brothel.

What in the hell were we thinking?

And then I asked my mom to move there?

Granted we technically didn’t live in Pahrump. We lived in a track community about 5 miles outside of town.

It wasn’t far enough. The trickle of garbage, fly larvae, and stench of unbrushed teeth eventually made it’s way right to my front door.

The housing market in Vegas started on its downward spiral the year after we moved, which subsequently really plunged the value of my house into the toilet.

After my mom moved in with us she began to recognize that my optimism when describing my city was really just an act of desperation to get her to move to Nevada.

I used to tell her “It’s really not that bad. You’ll get used to it.”

I think she wanted to believe me at first until one afternoon she told a coworker that she had a blind date that night. The woman looked at her with hope and jealousy in her eyes, and sincerely asked “Does he have all of his teeth?”

That was the last straw for my mom.

It also didn’t help that her date turned out to only be in possession of most of his teeth and then offered her a sad plastic rose at the end of the evening.

She stayed though. She didn’t hightail it out of there fleeing like a woman who is being chased by smelly, aging, toothless men.

It did, however, end her dating career in Pahrump.

Tags: , , , , , , , , , ,

Can You See Me? I’m Here In The Darkness. (Part 4)

24 Feb

I spent the last two days attending the Blind Cafe and then the 2013 TX Deaf-Blind Symposium. Because of these two events my perception of Oli and some preconceived notions of her abilities/disabilities have completely been swung around and turned on their heads.

Where I have focused a lot of my time on what she cannot do because of or what she will not do because of .I am now seeing exactly what she is capable of and what is possible if I give her the chance. Although I really felt like I had given her lots of opportunities to explore the world and chances to communicate, after talking with blind adults and listening to experts in the field, now I feel like. . . Holy shit! I still have been regarding her learning opportunities in terms of what I see as limitations because of her disabilities.

While I was sitting in the darkness at the cafe a striking realization came to me when the wait staff started answering questions. I hate to say that when I first see a person with a disability, I see a disability. I’m not supposed to see that right? Because my daughter has a disability? But I still do. I don’t like that about me and I really try not to. I realized that one of the things that was so wonderful about listening to the blind adults speak in the cafe was. . . I didn’t see a disability. I couldn’t! And it was great. All I heard were intelligent, funny, nice people speaking. And then I started thinking about what an advantage they have over all of the rest of us. They honestly get to know people in a fast, genuine, real way bypassing all of the visual judgemental nonsense that sighted people have.

Always aspiring to be one of those “good” people who doesn’t judge people by what they look like, what they’re wearing, or how clean they are (although I’ll bet blind people notice that one even quicker than me) I suddenly started thinking of Oli as. . .lucky. I stopped viewing blindness as something I would never want for her and although I still wish she wasn’t, I started looking at all of the good things about blindness. Like seeing people by way of her heart and judging them by the truth in their words and the honesty in their voices.

I had a moment when I was sitting in the dark, listening to the band play, that I was overcome by sadness. Silent tears poured down my face as I sat there thinking about how hard it was. Walking around not knowing where I was going, trying to find my food and not knowing what I was eating because nobody told me. Tasting food that I HATE and not knowing if I had a drink. Wanting to wipe off my hands and not being able to find my napkin. I felt helpless. I felt alone.

But as I sat there crying quietly so no one would know, I started to recognize that feeling. I remember spending a lot of my time feeling that exact same way in the first years of Oli’s life. Lost and alone, crying silently in the dark. I welcomed that feeling like an old friend and greeted her with open arms without even realizing who she is. Who she really is… is my own self pity. My own fear, ignorance, and judgement.

I opened my eyes, dried my tears and sat up straight in my chair.

NO! No more!

I will not allow this twisted friendship to continue! I will not welcome you into my heart! I will not pretend anymore that you will stay for a short visit and then let you live on my couch for years!

You Miss. . . are no longer allowed in my front door.

I am not helpless, weak, alone, unheard, unloved, or in this by myself. More importantly, this is not about me.

This is about Oli and she is none of those things either.

(Thank you for reading about my experience at the Blind Café! If you want to know more about it or want to know if it will be coming to a city near you go to www.theblindcafe.com The End.)

Tags: , , , , , , , , , , ,

Can You See Me? I’m Here In The Darkness. (Part 3)

24 Feb

As I concentrated on that feeling of smallness and aloneness, my husband nudges my shoulder propelling me out of my reflection.

“Hey Shannon? Have you tried shaking your head?”

“No.” I reply laughing at his enthusiasm for the experience.

“Try it. I’ve been doing it for the last 5 minutes.” He chuckles.

I start shaking my head back and forth, imitating Oli’s constant head movement.

“What’s it doing for you?” I ask Seth after a minute.

“I feel like I can hear the sounds around me better. I hear something different each time I turn my head.” He tells me. “What are you getting out of it?”

“Dizzy.” I respond. “I could only do it for a minute before I started feeling like I wanted to throw up.” I am a person who couldn’t even ride the Teacups at the county fair without wanting to throw up.

While I was sitting there my eye was continually drawn to a little red light on the ceiling. I’m guessing it was a smoke detector light or something like that. In the darkness I could orient myself to that light. Every once in a while another small light would be illuminated in the back of the room. I think it was from staff coming in and out and lifting a curtain.

Although I was WAY more secure sitting in my chair and not walking around in the dark, I was immediately drawn to any kind of change in the blackness. When I would see that little bit of light, a tiny tiny minute change in the texture of the dark, my body seemed to be able to orient itself to it. I instantly knew where I was in space. I didn’t feel so lost. I began to realize why it has taken Oli so long to be aware of where her body is. I began to recognize the HUGE importance of teaching her orientation with regards to herself and her environment because she doesn’t have any kind of light perception.

All of a sudden the lessons that I had been learning and teaching her made absolute and complete real sense to me. A light went off and I felt it. I felt why it was so important.

“It’s now time for the question and answer part of our night here at the Blind Café. The blind waiters and waitresses are inviting you to ask questions about what it is like living as a blind person.” The man who made this whole night possible, Rosh Rocheleau, stands up and introduces them.

“Everyone who has a question raise their hand.” This statement is met with a nervous, awkward silence and then followed by laughter as the waiters begin to laugh. Oh? It’s okay to have a sense of humor about this whole thing?

I think sometimes people are so insecure and uncomfortable around people who are different from them that they forget that they are just like everyone else. They are smart, funny, happy, real people. Except for the fact that they cannot see, they are just the same as you. The blind wait staff made us feel like it was okay. It was okay to ask the typical questions about blindness. They were so comfortable and confident in themselves, they tolerated the ridiculous questions and were happy to dispel many myths. I have to say, I was slightly annoyed at some people’s stereotypical questions about blindness. However, I am not afraid to admit that I too, have had similar questions when I first learned about blindness.

People asked questions like “Do you see in your dreams?”

Answer: “No.” People who have been blind since birth don’t see in their dreams because their brains just don’t work like that. They have never seen anything so their subconscious has no reference to input visual pictures into their dreams. They dream in smell, sound, and touch.

“Are your other senses super enhanced? Did they become heightened?”

Answer: “No. We don’t develop super powers like Superman.” A blind person’s hearing and sense of smell are the same as everyone else’s. If measured I’m sure it would be at a normal, appropriate level. Blind people just learn to use their senses better than you or I. They pay better attention to things that we generally don’t because we experience our world about 60% of the time through vision.

“Do you hate it when people say things like ‘Did you listen to American Idol last night’?”

Answer: “Yes. Absolutely. I try to be nice about it and if someone says ‘Did you listen to ….’ I respond, ‘Yes. I watched….last night.’ You don’t have to adapt your vocabulary just because I can’t see. I still use words like: see, look, watch….because they are acceptable terms in our language.”

“What is another one of your pet peeves that people do to blind people?”

Answer: “I hate it when I go out to a bar or restaurant with my friends and the bartender asks my friend what I want. They don’t ask me. They’ll say things like ‘What does he want?’ You can talk to me. Hello! I’m standing right here! I also hate it when I give them my money and they hand my change back to my friend. They never hand it to me. Ummm….it’s MY money. You can give it directly to me. Sometimes people treat me like I’m a child or incapacitated and I hate that.”

“What is a relationship like with another blind person vs. a sighted person?”

Answer: “Really, it’s the same. There is just a much bigger learning curve and much more teaching involved in dating a sighted person.”

(Check back again. I STILL have more to tell you. I could probably write a whole book on this experience:)

Tags: , , , , , , , ,

← Older Entries
Newer Entries →