Tag Archives: baby

Something That I Don’t Talk About

28 Mar

Aggghhh….Okay. This is the post that I didn’t really want to write. I didn’t want to write it because it makes me really sad. Which actually says a lot.

People have asked me to talk about what I felt like once I became pregnant again. What happened to make me decide to have another baby once I knew all that I knew about Oli.

I’ll start by telling you that it wasn’t an easy decision. Especially after we learned that Oli had a genetic deletion. It was something that could affect subsequent babies, although the likelihood was only 5%. 5% feels pretty huge once you already have an affected child. Any percentage above 0 feels like an enormously stupid roll of the genetic dice.

You want to know how I felt when I looked down at that little white stick and saw 2 pink lines appear?

I felt terrified. I felt scared and selfish and happy and overwhelmed.

I felt like I had probably just sentenced this tiny little miracle to a life of blindness. A life of doctors, therapies, and disabilities.

I didn’t have a whole lot of time to process learning that Oli’s condition was genetic. I found out about her OTX2 deletion and then found out I was pregnant just a few weeks later.

Many scenarios ran through my head once I knew that I was going to have another baby. One thought, which I really really HATE to talk about, was maybe I shouldn’t have her. Maybe I shouldn’t go through with this pregnancy.

I don’t like to talk about that thought because the idea of my Ginger not being a part of my life literally brings me to my knees with pain. It sends a stabbing knife of sorrow straight through my heart and makes it hard to breathe.

My baby girl. My little Ginger. I had seriously thought about not having her.

See no one really talks about this.

I was raised Catholic and abortion is something that you are never allowed to even mention let alone talk about. I never thought it would be something that I would ever consider. Because I never thought that I could do it. I always thought that if I got pregnant then I got pregnant and it was my responsibility to take care of that baby. Abortion was never an option.

Well…right at that moment…it became an option.

My views on abortion have always been more pro choice. Mostly because I don’t believe that I ever have a right to tell YOU how to live your life. That goes for my beliefs on everything. Religion, marriage, abortion… You name it. I don’t feel like I have a right to tell you what’s right for you. I’ve never lived your life, had your experiences, dealt with what you have. I never would feel comfortable telling you what to do. I don’t believe that anyone really should. Just because something may or may not be right for me does not mean that it may or may not be right for you.

So anyway…I struggled with what the right thing to do for me, my family, and my unborn baby might be. I did a lot of crying and a lot of praying and pleading that nothing was wrong with this baby. Eventually one night I was lying on the couch late at night. I remember lying there thinking, I have to make a decision before it’s too late. I tried to picture myself going into a doctor’s office and having the procedure. I tried to feel what it would be like to not know that anything was wrong, but choose to play it safe and not have the baby. How did it make me feel? Could I live with myself terminating a baby if I didn’t know that she was blind? What if she was blind? Was it really that bad? Even if she had other disabilities or something else happened, was it really better to never have been?

The answer I came up with that night was…no. No. I couldn’t do it. I couldn’t end a life based on the fact that it might be hard for her. I couldn’t not have her because it might be hard on me. It was going to be scary, but I just couldn’t terminate the pregnancy. I decided that it would be way worse to NOT give this child a chance at life, then to just have the baby born blind. I chose blindness as a possibility for this child over death.

I’ve never made a more significant decision in my life.

I went to the doctor and then called the Albert Einstein Medical Center to see if they could do genetic testing on the baby before she was born to find out if she was missing her OTX2 gene.

It was scary. I was scared the entire 9 months that I was pregnant. Even after the amniocentesis came back and said that she was fine…I was scared. Because what if something else was wrong? What if they missed something? They missed noticing that Oli’s eyes were small before she was born, what if they missed noticing something with this baby?

It was scary because I continued to wonder if I had made the right decision.

Another baby was going to take time away from Oli. She needed so much more time because of therapy and doctor appointments and she just needed more help with everything. It was going to take time away from Kekoa. He had already had so much of his time stolen away by Oli’s disability. Another baby was going to take more. And the baby. What about the baby? Would I have enough time and energy or even enough emotion left for this baby? Would this baby get enough of what she needed?

Was this the right thing to do?

Could I do it?

I had all of those questions throughout my pregnancy.

And then Ginger was born.

I laid my eyes on the most beautiful baby girl. This little baby looked at me with eyes that said “Just love me. I don’t need anything else. It doesn’t have to be perfect. Just love me.”

And I knew that I had made the right decision.

It was the right decision for me. I look back and think about what if things had been different? What if something had been wrong? Now I know that it wouldn’t have mattered.

It would have been a different road, but it wouldn’t have mattered. She would have been perfect anyway.

Because Oli is too.

Oli has taught me that life doesn’t always lead me down the nice, friendly, easy path. It’s not always sunny and clear. And that in my life I have received gifts that I never would have looked at as gifts. But that’s exactly what they are. If my last child had been born with a disability then she would have had a disability. She would have been different. And that’s okay. Different is just different. No more, no less.

I would have gotten through it.

Just like we all do when life hands us something that we are not expecting. We hate it, are angry with it and scream at it. We deny it and argue with it. And then we get through it.

And we move on.

Because really?

What else can you do?

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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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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.

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.

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.

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.

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

Real, Fake Eyes

19 Feb

“Never forget that anticipation is an important part of life. Work’s important, family’s important, but without excitement, you have nothing. You’re cheating yourself if you refuse to enjoy what’s coming.” ― Nicholas Sparks, Three Weeks With My Brother

A few days before Oli’s first birthday I woke up after only sleeping a few hours. The big day was finally here. The biggest day! She was getting her first pair of painted prosthetic eyes!

I could hardly contain my excitement. I couldn’t even imagine what she would look like. All of those feelings returned from when I was pregnant and would lie awake at night trying to picture her.

Before she was born I imagined her with big brown puppy dog eyes, long full lashes, and a sparkle that would melt everyone’s heart. Now I was imagining the same thing minus the long lashes and the sparkle. Little did I know how fantastically real, ocularist’s can make fake eyes. That sparkle was there, just painted on.

I rushed everyone through breakfast and we all piled in the car for the trip to L.A.

The drive seemed to take forever. Seth and I passed the time talking about what we each thought she would look like and what color we were going to choose.

“Brown. Or maybe blue. Kekoa has blue eyes. Or green like yours?” I couldn’t make up my mind.

“Blue. Kekoa and Thalia both have blue eyes and her little left eye looks like it is blue.” Seth makes the final decision.

“Blue it is.” I honestly really could have cared less by this point. All of those dreams of big brown eyes were receding from my mind and by the time she was 1 year old I just wanted her to have any kind of eyes. They could have been purple, red, or painted like cat eyes and I would have been absolutely thrilled.

Months and months of staring at blank eyes had made me realize how much I wanted to look at a pair of real looking ones. Although we had shed the ghastly pegs months ago, I was now anxious for the conformers to be painted.

I knew that I would love them, but I had no idea how much the prosthetics would change her whole face and appearance…

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Oli before she got her painted prosthetics.

What Do I Know? I’m Only Her Mother.

18 Feb

“Sweater, n.: garment worn by child when its mother is feeling chilly.” ― Ambrose Bierce, The Devil’s Dictionary

After Oli settled down it was time to transfer her to a room on the pediatric floor for an overnight stay. As they wheeled her upstairs I am staring down at my daughter’s beautiful face. My mom calls her a china doll because that’s what her face looks like. Especially when she was a baby and sleeping. Her face was so peaceful. Chubby cheeks, little porcelain nose and a perfectly round head.

The nurse notices me staring at Oli as she settles her into her new room and comments on how beautiful she is.

I know that she is beautiful but I’m a little taken aback by a stranger saying it. I just wasn’t that used to it. She was very beautiful, but because of her eyes most people just didn’t say anything.

“Thank you.” I tell the nurse.

“Let me know if she wakes up and seems like she is in pain. She has some medication ordered for her, but I don’t want to give it unless she absolutely needs it.” the nurse finishes up and leaves the room.

I was thinking “Oh good. This nurse won’t make her wait forever when she is hurting.” I breathed a sigh of relief and settled onto the chair to watch TV.

A little while later Oli wakes up crying. I pushed the nurse call button and tried to comfort her as I waited. The doctor had warned me that she might be a little more uncomfortable because he didn’t put in a G-tube so there was no way for gas to escape. Because the top part of her stomach was now wrapped around the bottom part of her esophagus (a fundoplication) she could no longer throw up, but she also could no longer burp. The doctor told me that if the pain the reflux was causing her was worse than the gas pain then it wouldn’t be too bad for her and she would adjust quickly.

Looking down at her now, I started questioning my decision not to put in a G-tube.

The nurse finally comes back into the room and has to raise her voice above Oli’s wailing. “Yes?”

“Yeah, I think she needs some of that magic juice ordered for her. I think she is in pain.”

“Oh I think she’s okay. She’s probably just hungry.”

I stare at her incredulously. Ummmm, no. I think I know her. First of all I have taken care of this little person while she lived INSIDE my body for 9 months and second of all I have taken care of her OUTSIDE my body for 7 months. That is 16 months 17 days 10 hours and 15 minutes longer than you have taken care of her. Besides, I think by now I know the difference between a cry of pain and one of hunger.

“No. She’s not okay. You need to give her some medicine.”

The nurse gives me a disproving look and then leaves to get the medication.

I couldn’t believe that she was actually going to argue with me!

She came back in the room and gave her the medication. Throughout Oli’s 2 day stay this was an ongoing fight with this nurse. I’m not sure what the problem was?

By the next morning Oli was much better and didn’t seem to be in pain at all. I got to feed her Pedialyte first which she inhaled (as much as I would let her. I had to be careful that she didn’t suck in too much air). Then once she was tolerating her formula we took her home.

The surgery was a success and I was so happy that Oli was feeling better. The doctor was right. The gas pains didn’t seem to bother her at all. The only downside is when she gets the flu she isn’t able to throw up unless the pressure is very great. So instead of feeling crappy and just barfing everywhere and feeling better she dry heaves for hours. It’s no fun for her.

As for the nurses I’m not sure what the problem was. They really should learn to trust parents and understand that they know their children. I didn’t want my baby doped up either but I knew that she was hurting and isn’t that what the medication is for?

Somehow being just a parent is equivalent to being stupid in some doctor and nurses eyes despite your credentials. What do I know? I am just her mother.

Even though I have not eaten, slept, or breathed, unless she has first, from the moment she was born. I can’t possibly know more than someone who has met her. . .once. . .for 15 minutes. . .and can’t remember if she is a boy or a girl. . .

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