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One Mother’s Expectations

14 Mar

“I thought that one day I would just wake up and have all of the answers. What I have found is that the answers I get, rarely have anything to do with the questions I ask.”

It was a warm day in June 2009 and I was sitting on our cream colored leather couch in the living room. I’m sure there was a cartoon on the TV that I had forgotten to turn off when my kids laid down for a nap. I was alone, which for some reason, I usually am when I get bad news. My husband was at work.

The phone rang and I glanced down at the caller ID.

Unknown.

I normally don’t answer calls labeled unknown and let them go to voicemail, but on that particular afternoon I answered it.

Unknown.

That is where I was sitting in the moments before I took that call. I didn’t know what Oli “had”. I didn’t know why. I didn’t have any answers. Why had her eyes not developed in utero? What was wrong with her? Why was she so different from other children her age? Why was she 2 years old and not walking or talking yet?

At that point in her life, I needed to know why.

I thought that if I knew why, I could help her better. I thought that if I knew why, then I wouldn’t be so angry with the world. If I finally got an explanation as to what had happened, then I could come to terms with the whole mess that had become my emotional prison.

I found out why, on a warm day in June when my phone rang and I answered a call from the Albert Einstein Medical Center. They were calling to tell me the results of Oli’s genetic testing.

I found out why it happened, but I did not find out why it happened to her. Which is really what I wanted to know all along.

Why did it happen to my family? Why us? Why did fate choose my sweet, innocent, beautiful little girl to bestow such a big obstacle on. A big difference. A hardship.

Why?

You see, for a long time I thought that this was some kind of punishment. I couldn’t understand why this happened to me. To my baby. I was a good person. I never hurt anyone intentionally. I had a good life. A happy life. I grew up with a great family. I had friends, went to college, had a job. I was grateful for my life and was just going along trying to be the best person that I could be.

And then…the ground fell out from beneath my feet.

I thought it was all happening to me and my family. It was my son and my husband who were affected by this.


I
took on ALL of the responsibility of the health and happiness of my little family because I was the wife. I was the mother. I was supposed to protect them, keep them safe and ensure their happiness.

And then Oli was born.

She was born and I wasn’t sure that I could do any of it anymore.

If I could not stop, prevent, change, or fix what had happened to this little person that I had brought into the world, then I could not stop, prevent, change, or fix what happened to any of them. That realization hit me like a 2 ton steel truck, right smack dab in the middle of my forehead.

When I realized that…I began to react and operate by my fear.

Fear of this big, scary world that had walked into my hospital room on another warm day in May, 2 years previously. That unknown world walked right in, handed me a big pile of crap called unmet expectations and promptly walked right back out of that room.

Oli wasn’t what I had expected. She didn’t fit into my box. The box that was supposed to hold my perfect little life. No matter how hard I tried to cram that square peg into that round hole, she would. not. fit.

When I answered that unknown phone call, I still had expectations. I expected to hear that she had SOX2. Something that lots of other kids had. This particular gene deletion is responsible for the majority of microphthalmia and anophthalmia.

You know what I heard instead?

I heard that she did NOT have SOX2. I heard that she had something else. Something that was not very well known or very common.

She had OTX2.

A gene called OTX2 was deleted from her 14th chromosome and caused her eyes not to develop.

They didn’t know a whole lot about OTX2. When they diagnosed Oli she was one of only 15 kids in the world known to have this deletion.

I expected to finally have an answer, a plan. I expected to find out her diagnosis and then hear, “She will do this at this time. Talk at this age. Walk at this age. Have this ailment, but never suffer from this one. She will go to college. She will get married. She will wear a pink dress to the prom.”

These are the things I wanted to hear when I got that phone call. I thought that I would finally have answers. Real answers. A plan. When I got the diagnosis, I expected a map for the rest of her life to be laid out during that phone call.

What I got instead was….we don’t know?

We don’t know what her future will look like. We don’t know when she will walk or talk. Or if she will at all. We don’t know if she will go to college, ever have a boyfriend or get married. We don’t know if she will ever even be able to live on her own. We just don’t know.

My expectations, the ones that I had been relying on this whole time, were shattered like a mirror when I got that diagnosis. Her future, reflected in that piece of glass that I had been focusing on for 2 years, came crashing down around my feet.

Now I had a diagnosis, but I was no closer to any answers. No one could tell me how to fix it for her or what I needed to do as her mother, to make her fit into this life. Because no one knew what this life would look like for Oli.

I hung up the phone and gazed out of the window towards the mountains in the distance. Tears freely rolled down my cheeks and I made no attempt to wipe them away.

Now I knew what had happened, but I realized right at that moment, that I would never know why.

A Phone Call I Won’t Forget

8 Mar

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On Saturday May 9, 2009 I got one of the few phone calls that I will never forget. How do I remember the specific date? Because we were celebrating Oli’s 2nd birthday.

We were having some family and friends over to the house to celebrate Oli’s special day. We were just getting ready for everyone to arrive when my cell phone rang.

“Hello?” I didn’t recognize the number on the display.

“Hi. My name is Bridget. I got your number from Tanya from the Albert Einstein Medical Center. I’m 22 weeks pregnant with my first child and I was recently told that they suspect that she has microphthalmia. I know you have a daughter with micro and I just had some questions and wanted to talk.”

It seemed like all of the breath was expelled from my lungs in one quick whoosh. My heart dropped to my stomach and the moment became imprinted in my memory. This woman was going to have a baby girl just like my Oli. I was one of the first people she reached out to. I knew how terrifying those first few weeks were when Oli was born. I remember searching for just one person who knew what I was going through. I found that one person and I still remember my phone call with her. Now I got to be that person. I got to offer another mother the same compassion and understanding that was offered to me.

I wished I could reach right through the phone and wrap my arms around this stranger.

“Where are you?” I asked.

“We’re just outside Austin, TX.” She answered.

Now, I was stilling living in Pahrump, NV at this time. Seth and I hadn’t even discussed moving yet. Well…we had discussed it, but we didn’t know where we were moving to yet.

Fate, strange coincidence? I don’t know. I find it eerie that we ended up moving about an hour away from Bridget just a little over 5 months later. We’re still friends, although she has since moved away to be closer to her family in St. Louis, MO.

“I’m so glad that you called me! I would love to talk with you about Oli and help you in any way I can.”

I remember carrying the phone into my bedroom, mouthing “another A/M (anophthalmia/microphthalmia) mom to my husband, and closing the door. I sat on my bed and asked Bridget to tell me her story. How she found out, what she knew about micro, and most importantly, how she was feeling. I remember she sounded scared, lost, and overwhelmed. But, she had something in her voice that I had been missing. Something that I pretended to have, but always fell short of achieving.

She had faith in her voice.

A lot of babies born with microphthalmia have some sort of vision. If the eyes are not too underdeveloped they may have some usable vision or light perception. Sometimes only one eye is affected and the other eye is normal. If the micro is severe enough, then the kids don’t usually have any sight and sometimes even when the micro eyes are not severe, there is no vision because other structures are involved. Like underdeveloped optic nerves. Basically….one just never knows until the babies show us that they can see or not. Anophthalmia means the eye is missing completely. This also can affect only one eye, the other being normal, or it can happen in both eyes. You would think that the kids with bilateral anophthalmia would not have any vision at all. You would think that they would be 100% blind because, well…because they are missing their eyes. Not true. I have heard of some kids with anophthalmia in both eyes and these children display signs of having light perception. You just never, ever know. You cannot say with any certainty that a baby is blind until they absolutely prove to you that they are.

When Bridget went in for a routine ultrasound the tech noticed that her baby’s eyes seemed small. Upon further testing/measuring the eye sockets they realized that they were really small. Although, no one knew the extent of the underdeveloped eye sockets. They wouldn’t know for sure until her baby was born.

For a long time after Oli was born I would think about what it would have been like if I had known about Oli’s eyes before she was born. Most people don’t know until birth because eye measurement just isn’t something they do with a routine ultrasound. They only do it if the tech notices that the baby’s eyes look small. I can make arguments about which would have been better for me, knowing or not knowing.

On one hand, I’m glad that I didn’t know because I got to enjoy my pregnancy. As much as I can enjoy being pregnant, which is not very much. I didn’t dread her delivery or have to worry about what would happen afterwards. For people like me, this was a very good thing. My mind has a hard time staying in today as well as suffering from constant abuse from my nemesis, Gertrude. That little old lady would have made my life a living hell in the months before her birth. If I would have known I would have been plagued by a constant rush of bad scenarios and terrible outcomes running through my head.

On the other hand, if I would have known, maybe I would have been better prepared. Maybe I could have talked to another A/M mom before she was born. Maybe it would have helped. Maybe not? Maybe I would have been paralyzed with fear and raging pregnancy hormones. Maybe….

Now it doesn’t really matter. Not knowing is just part of my story.

I talked with Bridget for a long time that warm day in May. I tried not to let my sadness or my fear for her creep into my voice that day. I tried to just listen and offer her whatever I had that might give her some peace. The truth is…Bridget already had it. Although I’m sure that she was scared, she already had a sense of peace about her because Bridget had faith in something bigger. Faith that her baby would be born exactly as God had intended and she knew that her baby would be well taken care of.

Her baby girl was born in September 2009. She has bilateral anophthalmia. She is totally blind.

And she perfectly named her baby….Faith.

If you want to read more about Bridget and her sweet Faith go to www.superbabyfaith.com

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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?”

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.

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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.

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

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.

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.

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