Archive | February, 2013

My Old Lady, Gertrude

28 Feb

Tomorrow Oli has surgery…again. Every time she has to go through this I think, “For sure this is the last time. Surely she won’t need anything else done.” I think it Every. Single. Time. And then we have to do something else. Something comes up that only can be done under anesthesia.

Tomorrow’s surgery is no big deal. I know that it’s no big deal. They will not be cutting into her. Many, many people have gone through MUCH worse with their children. I know that too. Oli will only be having an ABR (hearing screen) done and possibly tubes put back in her ears.

But…I am terrified.

I have this wicked old lady, Gertrude that lives in my mind. (Wait….stay with me here.) She likes to whisper nasty, horrifying things in my ear. Remember worst-case-scenario-girl from previous blog posts? The one who is sure the power will fail during Oli’s surgery and her arm will end up falling off? Gertrude tells me these things. “Yoo-Hoo! Shaaannoooon! What if the anesthesiologist is a drug addict and gives her WAY too much medication and she never wakes up?” This is not all that far-fetched. When I had my tonsils out as a child my doctor was an addict and really did give me too much anti-nausea medication. Fortunately it was just that and not too much sedation. (A few years after my surgery he ended up giving a pregnant mommy too much sedation and sadly, she died.) I just couldn’t control my tongue for hours after surgery.

What?

Yes it was very, very bizarre. It would pull back towards my throat and then hang out like a dog. On the drive home my mom kept saying “Shannon. Stop that! It’s not funny.” I told her I couldn’t help it. After I finally convinced her that I wasn’t doing it on purpose she got kind of freaked out. (Hello! Her child had lost all voluntary control of her tongue!) She called the hospital and after looking at my chart the nurse realized that during surgery, I had been given WAY too much medication. The sticking out tongue thing eventually went away after a few hours. Thank God!! What if I had to live the rest of my life like that? What if I still had no control of my tongue? Has that ever happened before? I should Google ‘permanent loss of voluntary tongue control’.

Then I start thinking, what if that happens to Oli?

No. I probably shouldn’t Google it. I don’t want to know.

I’m just nervous. Nervous, nervous, nervous.

I’m scared because they will be putting her to sleep (obviously that alone provides a whole crap load of things for that old lady to work with), but I’m also scared of the hearing screen results. What if it’s NOT just fluid in her ears? What if that doesn’t explain why her eardrum isn’t moving? What if it’s something congenital? What if she’s NEVER been able to hear well out of that ear? I’ve spent her whole life providing a lot of information auditorily. What if I’ve been doing it all wrong? It would definitely explain a lot if it turns out that she really isn’t hearing well.

No matter what, I have to try and ignore the millions of bad scenarios that are racing through my head. (Shut up Gertrude!) I have to put aside my own fear and step up for Oli. And I have to just keep moving forward whatever the results of that test show.

“Don’t dwell on what went wrong. Instead, focus on what to do next. Spend your energies on moving forward toward finding the answer.” -Denis Waitley

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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?)

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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…

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.

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.

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.)

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:)

Can You See Me? I’m Here In The Darkness. (Part 2)

23 Feb

As I continued my experience randomly selecting food and taking small fearful bites (you never know when they would sneak in another olive, or infinitely worse, a bit of cilantro) I start listening to the conversations around me. I turn my head to the left and listen.

Perk. No one could see that I was eavesdropping.

They were talking about what brought them here tonight. Most people had just heard about it and thought it would be an interesting thing to try. I speak up and say that I have a blind daughter. They start asking me questions about her and want to know what she has to say about blindness. I explain that Oli has autism and doesn’t talk. A woman across from me and to my left starts to tell me about her friends daughter who is also autistic. We are interrupted by a loud voice behind me.

“Seth’s wife? Seth’s wife?”

“I’m here!” I call out.

Were you wondering where my husband was during my first moments in the café?

Where else?

In the bathroom. Minutes before we followed the waitress behind the curtain and stumbled into the darkness, Seth decides he has to pee.

I guess the line was really long because he hadn’t returned when it was our turn to be seated. I knew he would find me eventually.

I grab his hand, well. . .I try to grab his hand, but really just keep grabbing our waitress Faith’s hand.

“Nope. Your still holding onto Faith.” She tells me as she tries to guide me to Seth’s hand.

“See? Woman hand.” I touch her smooth hand. “Man hand” She laughs as I finally grasp hold of Seth.

“Ahhh. . .very important detail. Smooth soft girlie hands and rough man hands.” I say giggling about my complete ignorance.

I really need to concentrate and let me other senses take over. I am focusing on the blackness with my eyes. Opening them wide and trying to discern any tiny shape, form or different shade of darkness. There was nothing and I am disoriented.

After Seth is seated I turn back to my left and try to speak to the woman about her friends daughter again.

“So your friend’s daughter has autism?” I speak in the direction I had before.

There is no reply.

My voice seems small and gets lost amidst the other conversations. I have no other way to get her attention because I cannot make eye contact with her and don’t know where she is to touch her arm. I don’t even know her name.

All of a sudden I feel very alone and lost. I feel unseen and unnoticed.

Is this what it is like for Oli? She can’t see me and she can’t talk to me.

Does this sweet little girl feel unnoticed, unheard, lost and afraid in her world of darkness?

I slump in my chair as my heart begins to feel unbearably heavy. I sit back as those startling realizations hit me and think about that moment.

I think about how I am feeling at that exact point in time and try to burn it into my brain. I don’t want to forget it because I am learning. I am finally learning a very small part about what it is really like living in Oli’s world.

(Check back later. I have more to tell you!)

Can You See Me? I’m Here In The Darkness. (Part 1)

22 Feb

I had the AMAZING opportunity to eat dinner last night at the Blind Café. Dinner and music in the complete darkness.

“Hold on to the shoulder of the person standing in front of you. Okay. Everyone ready to experience the Blind Café?” The woman at the front of the line leading us into the darkness has an advantage. An advantage that normally, in the sighted world she lives in, is a disadvantage. The woman in the black dress, holding a long white cane…is blind.

I quickly introduce myself to the woman in front of me and hold tightly to her slim shoulder.

The line begins to move. I walk behind a heavy white curtain and am immediately plunged into pitch blackness. As I took my first blind steps into the café my heart started pounding in my chest. I didn’t know where I was and I didn’t know where I was going. I simply had to trust the woman in front of me and hope that I didn’t walk into anything or fall over.

“Watch your head!” the woman in front of me suddenly shouts.

“What? Where?” I am ducking my head and swerving to avoid an unseen attacker.

“Left? Right? Where is it? What am I watching out for?”

No details are given. Those were the beginning moments that made me acutely aware of the importance of descriptive details when speaking to Oli about her surroundings.

We all follow in line until we reach our table. Our blind waiter begins to help each of us find our seat. We were told that our food would already be waiting for us on the table. I cautiously sit down and move my hands across the table.

What am I touching?

I have no idea.

There’s some squishy stuff to my left at 10 o’clock. There is a bowl of little balls and a short, fat, cone shaped object beneath the squishy stuff. The plate in front of me has a large, papery thing on it with a stick poking out of its center. Above that is more wet squishy stuff on little flat circles. Someone at my table said that there was bread in the middle of the table. I slowly reach my hand out and above my plate. I find more little balls. I move to the right. What is this? It’s slimy and wet. Now my fingers are dripping with a slimy oily substance. Where is my napkin? Did they give us napkins? Do we have utensils?

I search to the right of my plate and thankfully find my napkin. I also find a plastic fork. I contemplate using my fork to try and stab at some of my food and then quickly realize how pointless that seems. It will be way more efficient to use my fingers. Beside how will I know what I am eating unless I actually pick it up with my fingers? I find the bowl of little balls again and search for the cone shaped thing. I find it and decide to pick it up and smell it. My senses should be enhanced right? Since my vision is gone. Wrong. Total myth! I can’t smell it at all. It smells like something, but I have no idea what? It smells like my fingers and whatever that slimy stuff was.

After touching everything on my plate and probably everything on my neighbor’s plate too, I couldn’t tell where my food stopped and hers started, I decided to taste something. I find the squishy stuff on the flat circles and pick one up. I identified the circles to be crackers. I could feel the salt and circles. I raise it to my lips and take an apprehensive bite. Olives! Aaaccckkkk!! I HATE olives. The squishy stuff was some kind of spread. I don’t know what else was in it, but I could taste olives. I put the cracker down. Do I have a drink somewhere around here to wash the nasty olive taste from my mouth? I feel my way a little farther to my left, past my plate. I find a water bottle. Of course, I didn’t know it was water until I took a sip.

Moving on.

I’m really getting brave with my hands now. I find the bowl of balls again. I pick one up and pop it in my mouth. A grape. Yay! Win!

I pick up another ball. I think it’s another grape. Wrong. Olive! What-Is-With-The-OLIVES!! Tricky, sneaky, blind café.

FYI. An olive feels like a grape.

Seth Was On The Teacups; I Was Still On The Tornado

21 Feb

“Home is where you are loved the most and act the worst.” ― Marjorie Pay Hinckley

I remember that first year of Oli’s life being full of incredible pain and sadness. I remember wishing that she was older so I could just get past all of those feelings. I thought that she would just hit some magical age and all of those feelings would just disappear in an instant.

“If only she was 6 months old…”

Then she turned 6 months. Nope. The pain was still there.

“If only she was 1…” Nope.

I couldn’t understand why I just couldn’t get over it?

Seth made a comment when Oli was about 6 months old that he was so glad the first 6 months were over because he felt so much better. The roar of our wild roller coaster ride had dulled to the excitement of the Teacups.

I looked at him and smiled.

“Yes. Me too. I feel the same way.”

I didn’t feel that way at all. Not one tiny bit. I felt exactly the same as the moment when the doctor said she didn’t have any eyes.

I…was stuck.

I feel like I missed enjoying Oli as a baby because I spent every waking moment worrying about her.

When she turned 1 and it was time for her to get her eyes I thought that, that would be the moment I had been waiting for. She would get eyes and everything would be right with the world again.

Nope. It didn’t happen then either.

Don’t get me wrong, it helped. Once her eyes were painted, I didn’t feel like I had to hide her in her car seat when we went out to avoid the stares and the comments.

It made it a little bit better, but it turned out that it wasn’t her appearance that was bothering me. She was beautiful either way.

The first couple of days after she got her first pair of painted conformers was a mixture of highs and lows.

(Her first pair fit perfectly and were not crooked.) The moment Beverly put them in and turned Oli around to face us was incredible. Suddenly my girl had perfect, beautiful blue eyes.

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She had eyes.

We couldn’t stop staring at her, turning her this way and that. Examining her face from every possible angle. Oli had a funny look on her face, feeling the emotion in the room.

“Oh, Oli. Look at you! Look at your eyes baby! You’re so beautiful!” I gushed over her and cried with emotion.

We got back into the car and started the drive back to Las Vegas. Oli was still in a car seat facing the back seat so I couldn’t see her face when I turned around to check on her. I found myself making up excuses to stop the car. Suddenly I had an attack of the munchies, the thirsties, and needed 10 bathroom breaks on the drive home. Of course I had to take Oli out with me. (Even though Seth was still in the car.) I would get her out of her seat, pick her up, and then spend 5 minutes just staring. It was an amazing day.

The next morning the rush of that high faded and I began my descent to another low.

They had given her a pair of eyes, but she still couldn’t see me with them.

My girl still couldn’t see.

Why Are They Crooked?

20 Feb

“One of the reasons I blog is because I can’t afford
to pay for proper therapy.”

Once we finally arrived in LA it was one of those hurry up and wait moments. After what seemed like hours but, really was only 20 minutes, the receptionist called Oli’s name.

“Have a seat and Beverly will be with you in a little while.” she tells us.

A little while? I was practically bursting from my skin with impatience.

The ocularist, Beverly walks through the door a few minutes later.

We started out with Beverly’s partner, Steven Haddad but transferred to Beverly after a few visits. She was working more on different custom made conformers although Oli’s had never been custom fit. What I mean is, no mold was taken of her eye sockets and then a conformer made based on the mold, like it is now.

I would have preferred to stick with Steven.

Beverly was nice, but she would just never listen to us as parents. She was a rough spoken, tall, blond, older woman who liked to think that exactly what the prosthetic looked like or how it was positioned didn’t matter.

I didn’t really care at first when it was a little crooked and never seemed to sit straight. After a few appointments, I started to get annoyed.

“As long as it doesn’t bother her, it doesn’t matter that it looks like one eye is looking at the ceiling or that one is turned in. The point is that it is bigger and it’s in.” she would tell me.

Yeah, Beverly it does matter because it bothers me.

I didn’t want her eyes to look crossed or rolled toward the ceiling.

She never listened though. I should have been more vocal about it looking right.

After all, we were driving 6 hours one way and spending about $1000 on each eye.

I guess I just didn’t want to make a big fuss and trusted that she knew best because she was the professional. This was a common theme in the first few years of Oli’s life. I just trusted that everyone treated and loved Oli like I did. I thought that if they were teaching or caring for her they would give it 100% each and every time.

Now I’ve learned that, that isn’t always the case. Most of the time it is, but I’ve learned to trust that nagging feeling in my heart that tells me something isn’t as it should be.

I trust my abilities as her mother and know that I will always do what’s best for her and if it differs from what someone else is telling me, I have the right to say no.

It is my job to always give 100% because it’s not always the job of everyone else even when it should be.

IMG_0282
See how her right eye looks like she is looking at the sky.

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