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Monday, December 31, 2012

Oli is just a little quirky

Sometimes you need to look at Life from a different perspective.

As the first few days of Oli’s life turned into the first few weeks, results began to trickle in from Oliana’s many tests.  And I do mean trickle. Sometimes it seemed to take forever to hear anything back.  I guess I can sum up what most of those tests found by saying, they were pretty normal, except… not completely.

 My sweet Oli is just kind of quirky.

The cardiologist said that her echo was normal except for a few things.  Oli’s first quirk.  The right ventricle in her heart was a little larger than normal and there was a small hole in her heart that should have closed when she was born, except that it didn’t.  It was very minor.

She had a repeat pelvic ultrasound to check her kidneys.  They still had extra fluid in them and then the doctor threw in a bonus quirk.  She had 2 uterus's. 

What?  I’d never heard of that either. 
I was starting to think that I should have paid more attention in nursing school.

Of course, as soon as I got home I Googled “two uteruses”.  

Have I mentioned how much I love Google?

Apparently this is not all that uncommon. 
Google told me that the there were two draw backs.
Sometimes when a woman with two uterus's gets pregnant the baby can be born preterm because the uterus's do not stretch to the size of one normal uterus.  The baby runs out of room.

The second draw back was that it is possible for a woman to get pregnant at two different times and have pseudo twins.  A baby in each uterus.

Well, Google.  I’d say those are pretty big drawbacks!!!

A trip to the endocrinologist revealed that her pituitary labs were normal, except her pituitary gland did not look normal on the MRI.  He said that her posterior pituitary gland was ectopic.  Which just means that it wasn’t in the spot that it was supposed to be.  Oli has had a few more MRI’s since then and I have heard many different opinions about how her pituitary looks. 

Is it moving? Changing? Mutating?  I have no idea. 

I don’t think anyone really has a definitive answer as to what is wrong with the appearance of that gland. 

I told you she was quirky.

The rest of the MRI results were normal except….(Yep. You guessed it) for a few things.

Apparently she did not have an optic chiasm or a pineal gland.

Are those important? 

Here is what Google tells me about these VERY important pieces of her body.

From Wikipedia, the free encyclopedia

Jump to: navigation, search

Brain: Optic chiasm
Brain viewed from below; the front of the brain is above. Visual pathway with optic chiasm (X shape) is shown in red (1543 image from Andreas Vesalius' Fabrica)
Optic nerves, chiasm, and optic tracts
Latinchiasma opticum
Gray'ssubject #197 883
NeuroLex IDbirnlex_1416
The optic chiasm or optic chiasma (Greek χίασμα, "crossing", from the Greek χιάζω 'to mark with an X', after the Greek letter 'Χ', chi) is the part of the brain where the optic nerves (CN II) partially cross. The optic chiasm is located at the bottom of the brain immediately below the hypothalamus.[1]


[edit] Pathways

The images on the nasal sides of each retina cross over to the opposite side of the brain via the optic nerve at the optic chiasm. The temporal images, on the other hand, stay on the same side. This allows the images from either side of the field from both eyes to be transmitted to the appropriate side of the brain, combining the sides together. This allows for parts of both eyes that attend to the right visual field to be processed in the left visual system in the brain, and vice versa. This is linked to skin sensation which also reaches the opposite side of the body, after reaching the diencephalon (rear forebrain). This decussation (crossing) is an adaptive feature of frontally oriented eyes and therefore having binocular vision. (Some animals, with laterally positioned eyes, have little binocular vision, so there is a more complete crossover of visual signals.)
Beyond the optic chiasm, with crossed and uncrossed fibers, the optic nerves become optic tracts. The signals are passed on to the lateral geniculate body, in turn giving them to the occipital cortex (the outer matter of the rear brain).[2]

From Wikipedia, the free encyclopedia

Jump to: navigation, search

Pineal gland
Illu pituitary pineal glands.jpg
Diagram of pituitary and pineal glands in the human brain
Latinglandula pinealis
Gray'ssubject #276 1277
Arteryposterior cerebral artery
PrecursorNeural Ectoderm, Roof of Diencephalon
The pineal gland (also called the pineal body, epiphysis cerebri, epiphysis, conarium or the "third eye") is a small endocrine gland in the vertebrate brain. It produces the serotonin derivative melatonin, a hormone that affects the modulation of wake/sleep patterns and seasonal functions.[1][2] Its shape resembles a tiny pine cone (hence its name), and it is located near the centre of the brain, between the two hemispheres, tucked in a groove where the two rounded thalamic bodies join.

The MRI also showed that her optic nerves are so extremely small that they can hardly be visualized.  In a few years, they weren’t visualized at all.

And that folks is one reason why my girl does not see and a BIG reason why she does not sleep!



Sunday, December 30, 2012

I need a cocktail!

Oh, my friend, it's not what they take away from you that counts. It's what you do with what you have left. ~Hubert Humphrey


And so it began…

As awful as that first evaluation was, I knew that it was only the first of many.  Countless interactions with doctors and specialists, listing endless possibilities of what could be wrong with her.  I know that they were trying to help us but, I started to feel like I needed anti-anxiety medication or a stiff drink every time I walked through their doors.

What kind of syndrome, disease, or affliction hypothesis are they going to throw at me today?

Sometimes I knew right away as I rushed home to Google their current theory.

Okay, I know she doesn’t have that!!

Sometimes I came up with my own diagnosis.

Whoops! Cats out of the bag!
I still do that sometimes.

(Didn’t I mention that my special needs mother hat also came with a medical degree.)

I guess in a way I am lucky.  I knew right away that something was wrong with Oli.  I’ve never had to search out doctors and try to convince them that something is wrong with her.

Ahhh…the silver lining?

On the other hand, I have had to convince them of things that are not wrong with her.

Yes, I promise you she can hear.
Yes, she really can feed herself a little.
Yes, she really can repeat a few words.
Yes, she really can walk a few steps by herself.
Yes, I promise you she does smile and laugh.

You are just not warm and inviting enough to have earned her smile nor are you funny enough to have earned her laugh.

Poking at her probably doesn’t help.

Sorry but, your loss.









Saturday, December 29, 2012

The first evaluation...it was awful!

“I wanted a perfect ending. Now I've learned, the hard way, that some poems don't rhyme, and some stories don't have a clear beginning, middle, and end. Life is about not knowing, having to change, taking the moment and making the best of it, without knowing what's going to happen next.
Delicious Ambiguity.”
Gilda Radner

Driving home from Dr. Hyun’s office that day my brain felt like it had shifted into overdrive. I was calling all of the doctor offices and the medical center trying to schedule Oli for her appointments,  MRI and lab draw.   Flipping through my appointment calendar I remembered that I also had to call Nevada Early Intervention Services and schedule an appointment with them.  NEIS serves the special needs children in the Las Vegas and surrounding areas that are under the age of 3.  After age 3 the children transition into the school district. www.health.nv.gov/BEIS_EarlyInterventionPgms.htm

No one had recommended that I call NEIS.  I just happened to remember referring some of my patients to them while reading off their discharge instructions. 

I’m thankful that I knew of them and knew that they might be able to offer us some help.  To be honest, I didn’t know exactly what they did.  I just knew that when I had a patient going home that might have some developmental delays we told them to call NEIS. 

 A woman from the front office answered my call and set up an evaluation for the following week.  She told me to bring Oliana to the appointment and they would look at her and decide which services she would benefit from.

I hung up the phone and was proud of myself for finally doing something for her instead of just worrying about all of the things that I couldn’t do.

Later that day a woman I worked with contacted me and offered to come out to my house to look at Oli.  She was a neonatal nurse practitioner in the NICU I worked at and she also occasionally worked with the pediatric genetic doctor in Las Vegas.  She told me that if she came out and did her own evaluation of Oli she might be able to submit it to the doctor and get her in earlier than the 6-9 months that we were told.  I was more than happy to comply.

When she came out to the house she began the physical exam.  She laid Oli down on a small flowered blanket and began measuring every inch of her body with a little fabric measuring tape.   I was not prepared for the onslaught of abnormalities that were revealed to me during that evaluation.

Her little ears were too floppy.
Her eyes were too far apart.
Her eye brows were not level.
The bridge of her petite nose was too wide.
Her nipples were too far apart.
The space between her delicate fingers was too wide. (What? Why does that even matter?)
Her peach fuzz covered head was too small.
Her physical tone was too weak.

The list went on and on….

I just wanted to scream at her.

Stop! Stop! I don’t want to hear any more! 
This is my child!  My perfect little angel and you are picking her apart!
What child could possibly measure perfectly according to your standards?
Please, just stop!
Leave my baby alone!

But she didn't stop because I couldn't yell any of those things.  I just let her continue until she was finished and I was completely defeated.

Then she got into her car and left and I picked Oli up and cried.


Friday, December 28, 2012

The doctors opinion

“One person's craziness is another person's reality.”
Tim Burton

Continuing on our scavenger hunt, the woman from the blind foundation gave us another name.  A pediatricians name.  Oli had already seen one since leaving the hospital, but we were not impressed. 

The opthamologist told us to make sure that Oli’s pediatrician drew labs to check her pituitary gland.  She told us that she knew kids with microphthalmia commonly had abnormal pituitary glands and that it was imperative to check the labs. 

Her first pediatrician just blew me off with an annoyed look when I asked for the labs to be drawn.  Apparently this was a common attitude with this particular group of pediatricians.

Don’t we need to check her pituitary labs to make sure she doesn’t need medication?  Don’t we need to check her growth hormone?

No.  We don’t need to check them right now.  We’ll just watch her and see what happens.

Watch and see what happens?  She’s not a science experiment or an action movie!  I don’t want to just watch and see what happens! I want answers!

We will just wait until after you see the geneticist and see what she says.  I’ll wait for her recommendations.

There was only one pediatric genetic doctor for the entire Las Vegas valley.  The waiting list to see her was 6-9 months long.

Don’t you think we at least need to do an MRI to take a better look at her brain?  Don’t you need to draw chromosomes?  I’m sure the geneticist will want chromosomes drawn.  What about her kidneys?  The doctors at the hospital said that you should refer us to recheck her kidneys.

No. I’m not going to order any tests.

By this point she was really annoyed with me for questioning her.  She knew, that I knew, that she was uncomfortable taking care of Oli.  She had no idea what to do for her.

I left that appointment feeling frustrated and bewildered that a doctor wouldn’t want to look further into what was going on with my daughter.  Why didn’t she want to help her?  Now what?

Then we went to the open house at the blind foundation and received the name of the perfect pediatrician for us and for Oli. 

Dr. Rosemary Hyun.

The day of Oli’s first appointment she came in the room and sat down.

How are you doing?

(You can guess my answer.)

I’m fine. Thank you.

I’m glad that you were able to meet another family with a child like Oliana.

Yes.  The mother of the boy gave us your name.  We weren’t very comfortable with Oli continuing to see the first pediatrician we scheduled.

I’m glad you’re here.  Let me just take a quick look at her and then we will discuss what tests need to be ordered and if there are any additional things you want ordered.

She was asking my opinion?  Really?

I was so surprised.  This doctor was actually considering what we needed as her parents.  She was thinking like a parent herself.  What would she want to know if it was her child.  I probably don’t even need to say this but,  for a doctor, this quality is very rare.

After she looked over Oli carefully she began to write down a list of tests and labs to be ordered.  She asked us if we needed anything else.  Then she handed us the slip of paper detailing everything that she had ordered.

Cardiologist appointment for an echo.

Endocrinologist appointment for labs.

Urologist appointment for her kidneys.

MRI of her brain.

Lab appointment to draw her chromosomes.

A follow up appointment with her.

A referral for the geneticist.

It seemed like an overwhelming amount of appointments.  Especially, since I was used to seeing the doctor only once every 3-6 months with my son.

But I needed answers.

As I walked out of her office a startling realization hit me.

Was this how the families of my patients in the NICU felt when I sent them home?

When I discharged them from the hospital with a list of appointments, doctor names, medications, medical equipment, and specific feeding times.

Was this how they felt when I carried their baby through the sliding glass doors of the hospital, handed them the car seat and 15 plastic hospital bags containing all of the things they needed to keep their child alive and said “Good luck”!

My experience with Oli began to give me a whole different perspective and a new found respect for the families of my NICU babies.



Wednesday, December 26, 2012

Will she forgive me?

“The truth is, unless you let go, unless you forgive yourself, unless you forgive the situation, unless you realize that the situation is over, you cannot move forward.”
Steve Maraboli, Life, the Truth, and Being Free

I wasted so much time at the beginning of Oliana’s life wishing and praying that things would change.

I wished that we could find the right doctor for her. I wished that she had been born without a disability. I wished it was easier.

I prayed that God would let her have some vision and that nothing else was wrong with her. I prayed that she would not be significantly delayed.

I prayed that I could just accept her as she was.

One by one, as these wishes failed to come true and my prayers were left unanswered, I became angry.
I was angry at my friends and family for not understanding what I was going through. I was angry at the doctors for continuing to give me bad news. I was angry at God for thinking that I could handle this.

I was so angry at God.
What did I do to deserve this?
I felt like I was being punished.

Much later I realized that I was feeling sorry for myself. I was being selfish and turning Oliana’s disability around and making it about me.

The angrier I became, the more I began to detach myself. I started pushing everyone who cared about me away.

I would often think, why can’t they just understand how hard this is?

As we continued to receive disheartening news about Oliana's condition, I spiraled deeper and deeper into a vortex of anger and despair.

The things I felt during those dark days are very hard for me to admit to now. I wanted to be okay with who she was back then. But the truth is, I just wasn't.

I know that I am going to have a very hard time as my children grow older and want to read this. I never want them to look at me and think that I didn't love Oli because I wanted to change her. These two things seem like they can’t co-exist but, in my life they did. I did want to change her. I also loved her. It just wasn’t easy.

As I continue to write this, the hardest questions of all are:

How will I read this to Oli?

Will she understand?

Will she forgive me?



“Prayer is not asking. It is a longing of the soul. It is daily admission of one's weakness. It is better in prayer to have a heart without words than words without a heart.”
Mahatma Gandhi


As we left the Nevada Blind Children’s Foundation that day I felt a little less alone.  I finally met someone who knew what microphthalmia was.  I still didn’t know what this would mean to my daughter but, I began to have that tiny seed of hope again.

The woman from the foundation told me that even though her son had bilateral microphthalmia and the doctors told them that he would be totally blind, he was actually able to see a little bit of red light.  So maybe that was a possibility for Oli.  Maybe she wouldn’t live in complete and total darkness.  Maybe if I began to pray hard enough she would be given the gift of having some kind of light perception.

I began to once again direct my prayers toward Oliana having vision. 

I didn’t realize then, that praying for someone to be given something, is not really how the whole prayer thing works.  Although I was praying for her to have some sight, part of me was really praying for an easier life for myself.  If she could see something, anything really, it would probably make this whole thing easier.

 If she could see something she wouldn’t be among the small percentage of people who are totally blind.   That small percentage that I had read about, many of whom are illiterate and unemployed. And if she wasn’t completely blind, I could probably still force her to fit into my little box of perfection. 

As long as nothing else was wrong.

Many times I also prayed “God if she is going to be blind, let her just be blind. Please don’t let anything else be wrong.”




Monday, December 24, 2012


“When someone is crying, of course, the noble thing to do is to comfort them. But if someone is trying to hide their tears, it may also be noble to pretend you do not notice them.”
Lemony Snicket, Horseradish: Bitter Truths You Can't Avoid

Seth and I decided to go to the Nevada Blind Children’s Foundation open house.  I was nervous about taking Oli out anywhere besides the doctor.  I didn’t want people staring at her or asking me questions about her eyes.  I didn’t want to have to start explaining my baby to people.  She was only a week old.

 We had to make the trip though.  We didn’t have any other place to go.  I needed to talk to another parent about what it was like to raise a blind child.

 The open house was in Las Vegas.  I tried to prepare myself on the hour long drive there.  I didn’t want a lot of people looking at her or touching her.  She was so small and I felt that fierce need to protect her like I had my son.  I brought my baby sling to put her in.

  I brought it because I knew that it was the best way to hide her from the world.

 If I could only hide her for a little while longer… maybe eventually I would be ready for the world to meet her.  Right now, I just wanted to get in, ask my questions, learn the secrete language or hand shake or whatever it was that I needed to learn in order to live this life and function normally.

 I really thought that these people would give me the magical keys to my new life.  I thought they would open the door for me.  After all I was now part of their club.  I had a child that was blind.  I thought they would just sit me down and explain it all.

It didn’t happen that way.

 They were very nice.  They told me their son was 3 and had bilateral microphthalmia.  I remember that I really wanted to meet him.  I wanted to be able to picture what Oli would be like in 3 years.  I wanted to see what his eyes looked like.  I thought that because Oli had the same condition as him they would be very similar.  I thought all kids with the same diagnosis were similar.  Obviously there was so much that I didn’t know.  I was disappointed when they told me that their son wasn’t there.

 The mother of the little boy approached me.

 How are you doing?

 I’m fine.  Thank you.

 Can I see her?

 Oh my God. The moment of truth.  Someone wanted to look at her.  At least this was someone who was familiar with her condition.  I felt a tiny bit more secure as I pulled the fabric back from her face.  She peaked inside the sling.

 She’s beautiful. Congratulations.


 I don’t think anyone had said those words since we found out about her eyes. 

As tears welled up in my eyes the next words out of my mouth were spoken with complete honesty and appreciation for that one word. Congratulations.

Thank you.

Thank you for reminding me that she was a baby.  She was my baby despite her disabilities.  I should be proud of her and people should not be afraid to congratulate me.

That word was spoken by a woman who, through her own experience, knew exactly what I needed to hear.  She could sense that I was frightened about what people would say.  Frightened by the way people might look at her. 

She knew what I needed and that is exactly what she gave me at the moment when I needed it most.



Saturday, December 22, 2012

Scavenger Hunt

"Remember, an easy question can have an easy answer.  But a hard question must have a hard answer.  And for the hardest questions of all, there may be no answer -except faith." -Charles Sheffield, Brother to Dragons

We went to the opthamologist appointment 3 days after I took Oli home. This is the doctor that the hospital had recommended to us. Since this is the only suggestion we had received so far, we went.
Her name was Dr. Shin.
She was sweet and sympathetic, but she told us that she was not familiar treating microphthalmic children. She could only tell us what we already knew. Oli's eyes were extremely small and she probably would be totally blind.
She did lead us a few more steps into the beginning of our journey by giving us two names.

One was the name of a family who also had a son with microphthalmia. This family had started a foundation called the Nevada Blind Children's Foundation. www.nvblindchildren.org
She told us that the foundation was having an open house in a couple of days and we should go and meet this family. 
Finally! We were going to be able to talk with someone who knew what we were going through.
The other was the name of a colleague she went to school with. He was another opthamologist but, had treated kids with microphthalmia before. He was located in Los Angeles which was about 6 hours away.
I still did not know what all these people were going to do for my daughter and my head was swimming with too much information. I thought that the doctor in L.A. was going to fit my daughter with her first pair of conformers. I found out 2 months later, when we saw him, that he was just more of an expert on her eye condition. I'm still not completely sure why we needed to see him. He told us the same information that we had heard since she was born. That her eyes were extremely small. We did finally get the name of an ocularist though.

I felt like I was on a scavenger hunt. Each person we met would lead us to another person and they in turn would lead us to another. Each clue was supposed to be leading me closer to an answer.
 But I never received the answer I was looking for.
 A way to make her better.
I may as well have been searching for the end of the rainbow. 

Friday, December 21, 2012


"Dear today,
I spend all of you pretending I'm okay when I'm not, pretending I'm happy when I'm not, pretending about everything to everyone." -Nina LaCour

After a few days of the earth quaking beneath my feet I think I began to absorb the shock waves that hit. I became numb. I went into what I now call, my "I'm fine mode".
A few people were really good about calling me to see how I was doing. I would always respond with the same response. No matter how I was actually feeling.
I'm fine.
Fine really stands for:

F#$@&*  Up
That's exactly how I was feeling.
But I could never lower my defenses long enough for anyone to get a real glimpse inside.

I didn't want anyone to think I was weak.

I really got into the "I am indestructible" role I played for everyone.
In reality I felt like I was falling apart.

If I would have let someone inside my head at the time this is probably the conversation they would have heard.
How are you doing Shannon?
Well, let me see. I just had a baby that has some pretty significant disabilities and my son is still only a baby himself. I am completely terrified not to mention that this really just screwed up my whole plan for my future. I just want to run away from it all but, you see I have this image I portray to the world and running away isn't really in sync with the "pretend" me that everyone is counting on. Everyone is counting on me to be this person that knows all the answers so I just need to go along and fake my way through it. Even though I really just want to curl up and die.
Nope. I definitely could not let that craziness out of the bag.
So I just went on pretending.

Everyday I was the feature actor in my own life.

Life is not always easy

"Life is loving so hard you inspire and become inspired to be the next level of the person you never knew." -Unknown

After Oli's bath that night I gave Kekoa his bath. He was so happy that we were home and he was especially happy to have his baby home. I got the cutest pictures of him with Oli that night.
He was so amazed that this little doll was real. She wiggled and cried. She would grasp his chubby finger if he placed it in her hand. He just kept staring at her tiny hands and feet.

After I took some pictures we went into the bathroom and I started filling the tub with water. When it was ready Kekoa climbed in and began to play in the warm water. I was just staring at my perfect little boy.
My little boy.
I cried the day I took Kekoa home from the hospital. I had to go out to Target and I started sobbing in the passenger seat on the way there. Seth looked over at me like I was crazy.
What's wrong? Why are you crying?
I don't know. I'm just so afraid for him. I'm afraid we're going to get into a car accident and he's going to get hurt. I'm afraid someone will want to look at him and accidentally sneeze on him and he will get sick.
I'm afraid someone will want to touch my new baby.
I just want to protect him from the world.
I remember all those fears while I watch my son take his bath.  I am overwhelmed again by my fierce instinct to protect him.
I want to protect him from this challenging and unfair life that now lays before him.
I want to protect him from the bullies at school that will tease him because his sister is different.
I don't want him to ever see people staring at Oli. Watching his little face as he tries to comprehend why people are looking at his little baby and then turning away with pity on their faces.
Watching him try to understand the question that will inevitably come.

What is wrong with her?

I just love him so much and I want to give him everything.
I realize now, that I just wanted to give him everything that was easy.

Life is not always easy.

She gave me a new meaning to that phrase.

It no longer meant that life wasn't easy because the money was a little tight that month. Or that it wasn't easy because I might not be able to afford the new car I wanted or the bigger house with a bigger yard.

It used to mean that life was hard because I might not get what I want.

Now it was hard because I began to see how small and insignificant this all was.
It was hard because I now realized all that I had taken for granted and just thought I was entitled to.

It was hard because I really wanted my old life back.
I didn't want to think about all of the challenges that now faced my family.

I wanted to remain where I was, even if it meant I would never grow.

I wanted my son's life to be easy.

I could only look at him and cry. I just looked at him and repeated the 2 words that had become my mantra to my children.

I'm sorry.

Thursday, December 20, 2012

It was blue.

"There is no better way to thank God for your sight than by giving a helping hand to someone in the dark." -Helen Keller

The first night at home with Oli I did what I always do with my babies. I gave her a bath. She was so tiny and sweet. I washed her little arms and legs. Her little round head covered with blond fuzz that I was so excited about. Kekoa had been born without a single hair on his head. I washed her petite nose and her small eyes that still had not opened.
I just wanted her to open her eyes.
When they did the CT at the hospital the doctors told me that both of her eyes were extremely small. The left measured only in the 10th percentile of normal. The right was half the size of the left. We would later see that her right eye was really just an empty socket. What they saw on the CT was only a bit of underdeveloped tissue located behind her socket.

I knew that her left eye probably wouldn't look like a normal eye but, I still needed to see it.
A mother needs to inspect every single part of her new baby.
I felt like I was being cheated out of that right as her mother.
No matter what it looked like, I needed to see it.

After her bath that night I tried to fill out the information in her baby book.   A pink baby book.   A book that I had spent a lot of time searching for. It had to be the perfect book because when I bought it at 8 months pregnant, I knew my daughter would love to read through it someday. Just like I still like to look through my baby book.
I started filling out the questions.
What time was she born?
How much did she weigh?
How long was she?
Then I got to a question that made my heart drop.
What color were her eyes?
My eyes filled with tears.
I don't know.
I don't know what color her eyes are.
Why can't she just open her eyes?
Why can't I do something to help her?

I still hate that book. I haven't look at it in years. I hate it because I remember sitting in my brown rocking chair by the window. I remember reading that question and feeling incredibly small and useless.
I hate that book for making me feel like I was useless to my daughter.
She finally opened her left eye 2 days later.
She was 4 days old.
It didn't look normal. It was small and underdeveloped. It had a tiny blue iris that danced around in her head.
I knew that she couldn't see me with it. When she opened her eye I knew that my daughter would never see me.
But, to me, it was beautiful.
I was finally going to be able to write down in her baby book what color her eyes were.
It was blue.


"If isolation tempers the strong, it is the stumbling-block of the uncertain." -Paul Cezanne

When Oliana was born we lived in a town called Pahrump, an hour outside of Las Vegas.  We had moved there from Vegas only 5 months before her birth.  I took my baby home to a house 1500 miles away from my mom, who lived in Iowa.

 I had never really felt lonely before but, that day I began to realize how alone and completely isolated I was. 

I just wanted my mom.

 I have always been a very independent person but, right then, I just wanted her near me.  I wanted her to hug me and tell me again that I was going to get through this.  And that it really wasn't as difficult as I imagined.  Even though she had never raised a child with a disability, I wanted her advice on how to walk this difficult road that now lay before me.  I had no idea even where to begin.

Going back to that house in Pahrump felt like being abandoned on a sinking ship.
There was no one around that I could use as a life raft when I began to feel like I was drowning

There were no doctors or therapists for her in Pahrump.  Oli's nearest physician would be an hour away and I still didn't know exactly what kind of medical complications she might suffer from.

I began to realize what a terrible mistake it had been to move to there. 

I didn't know back then, what living out there in isolation was going to do to me.

Tuesday, December 18, 2012

A phone call to my mom

"I cannot forget my mother.  She is my bridge.  When I needed to get across, she steadied herself long enough for me to run across safely." -Renita Weems

I think the hardest phone call I have ever had to make was the one I made to my mother, telling her that Oli was blind.  I don't even remember the details of that conversation but, I remember thinking...

I can't believe I'm telling her this.
I can't believe that I have to tell her that I will not be able to give her granddaughter the kind of life that she gave me.

My mom LOVES her grandchildren! ( Notice the capitalization and exclamation mark.  This means that sometimes I think she loves them more than me.)

I can't even imagine what she was thinking when I whispered those 5 words into the phone that day.

Mom, my baby is blind.

I could hardly even speak the words. I didn't want to speak them. If I said those words to someone outside my hospital room, that would solidify it.  That would make it real.  I didn't want it to be real. 

I was crying uncontrollably and I just wanted my mom to do what she always does when I am hurting.

I wanted her to make it go away.

I wanted her to stand up for me, yell at someone for me, tell me how unfair this all was. 

I wanted her to say that she would fix this for me.

But, she couldn't make it go away this time.
This is the one time my mom didn't offer to fix it for me.

She just cried with me.  She told me how sorry she was that this had happened.
And then she told me that it would be hard but, I would get through it.

My mom's heart was broken that day. 
She loves me and my children like her life depends on it and I know that if she could have bargained with the devil for Oli's eyesight she would have done it. If she could have fixed it somehow, she would have.  She would have fixed it so that I didn't have to feel this unbearable heartache.

But she didn't offer me a lie that day.
She didn't offer to do something that she knew she could never make happen.

Moms can't always fix things for their children, even when their hearts are shattering to pieces before them.

My mom showed me that day how hard it really is to be a mother.  I love her immensely for the things that she unknowingly taught me that day. Things that I now know are the honest gifts of a mother to a child.

 She has never lied to me  when she knows something is going to hurt.

Never promised me things she knew I will never have.

And she  has never tried to fix something for me when it is not truly broken.

8 Things I wish someone would have told me when Oli was born.

"None of us is as smart as all of us." Eric Schmidt

1. I am my child's parent 1st.

I am not her therapist, or teacher.  I am definitely not her drill sergeant.  It's okay to just be her mom sometimes. Of course, I still have to work with her at home.  But, I no longer have that tremendous amount of guilt when I just cuddle her instead of doing physical therapy exercises.  I don't feel guilty when I carry her up the stairs once in a while instead of forcing her to walk up them when she doesn't want to.

A woman from the Texas School for the Blind and Visually Impaired told me this when Oli was 4 years old.  It was the first time anyone ever gave me permission to "just be her mom".  I will never forget that because it was the gift that I had been aching to receive since the day she was born.

2. Think about today.

Boy, does this one catch me up sometimes... I don't need to worry about the things that Oli will or won't do 10 years from now. (I really like to do this!)  It just weighs me down when I do.  I have realized that she can do what she can do today and that is just fine.  I really can't tell you what her future will look like but, for right now, what she is doing is perfect.

3. Don't be afraid to be Donald Trump 

If a doctor talks about Oli while she's in the room like she is not even there, I fire them. 

If a doctor is not compassionate and does not realize the he/she is treating my whole family and not just my little girl, I fire them.

If a doctor or therapist seems annoyed that my 2 year old is crying and my 7 year old keeps interrupting because he wants me to look at his latest accomplishment on his Nintendo DS game, I fire them.

These doctors and therapists have no idea how many times I have dragged my other children to these appointments. How many hours of their short lives have been spent in waiting rooms and in the car driving to different appointments.  If they cannot respect the fact that my other children are also affected by Oli's disabilities, we find someone who does.

4. Google is my friend.

5.  Laughter is an even better friend.

6.. I probably have Post Traumatic Stress

Oli's wonderful pediatrician in Las Vegas, Dr. Hyun, told Seth and I this while we were sitting in her office one day. 

It could have been our red swollen eyes, lack of matching clothes,all around disheveled appearance and the "Holy shit! What just happened?" look on our faces that tipped her off.

It was the first validation I received that all the craziness in my head had a diagnosis.

7.. Functional not Perfect

So many therapists would spend hours trying to get Oli to do things perfectly.  She was never successful because the reality is,  no child does things perfectly when they are just learning to do something. Special needs or not.

Oli's new physical therapist, Cathrine, was working on trying to get Oli to stand up from the middle of the floor. (We had been working on this for a couple of years with different therapists.)

She told me on her first visit, "I don't care how she does it.  I just want her to be able to do it. It doesn't have to look pretty."

And guess what....Oli did it!

8.. Special = Expensive

Having a special needs child is very very expensive.  I had to claim bankruptcy when Oli was 6 months old because of the mounting medical bills, co-pays, and things our insurance didn't cover.

 Very Special = Very expensive

(It's okay. I'll still take very special, even though it means I'm broke all the time.)

Monday, December 17, 2012

Never going to be the same...

"We must be willing to let go of the life we planned so as to have the life that is waiting for us." -Joseph Campbell

We drove baby Oli home on a warm sunny day.

 I was trying my hardest to be upbeat for my son despite my inner turmoil.  I was sitting in the back seat with Kekoa, listening to his favorite nursery rhyme CD.

As we were driving past the desert mountain bike trails that Seth and I used to ride, I am reminded again of another life.  Another person that I'm having a harder and harder time connecting with. 

I feel like I am floating away. 

Leaving behind the person I was.  My life, that used to make perfect sense to me, now I can no longer recognize.  I am being consumed by despair of the unknown.

I look at Seth in the review mirror.

Our lives are never going to be the same.

A medieval torture tactic

"I liked things better when I didn't understand them." -Bill Waterson

So that's what I did.  I just took her home.  I didn't have a battle plan or an army and I certainly didn't have a force field.  I had the only things I could offer her at the time.  I had an infinite amount of stubbornness, a heart bursting with love and two eyes that I would share with this little girl for the rest of my life.

An enormous amount of weight settled on my shoulders that day as I strapped this tiny person into her car seat.  I could feel the weight threatening to suffocate me.

 Before I left the hospital, my sister in law, gave me a website.  It was for an organization called ican.  International children's anophthalmia and microphthalmia network. www.anophthalmia.org  I did not know that this information would become a life line when I began my adventure into the unknown.

I did know that no one in that hospital had ever really seen a child born with this condition.  The only person they could direct me to was a pediatric opthamologist.

So before I left the hospital I googled ican.  It was full of people,terms and images that were so foreign to me, I had a hard time comprehending what they were saying.

 I didn't know what an Ocularist was.  This was a profession?  I had never heard of it.  Of course, I had never heard of a baby born without eyes either.

So I googled ocularist.  Apparently he was some sort of artist that made these things called conformers.

I googled conformers and was overwhelmed by what I read.  An ocularist makes, and then forces these conformers into the eyes of anophthalmic and microphthalmic children in order for the eyes to stretch big enough to wear painted prosthetic eyes.  At the time, this sounded like some kind of medieval torture tactic.

What? This sounds barbaric!  Wasn't there some kind of new technology for these children?  Something not so painful?

We would have to do this every month for years in order for her to wear prosthetic eyes. And it might not even work.  Her eyes might never stretch enough to wear prosthetic eyes.

It said that we would need to start this process as soon as possible to give her eye sockets and eye lids the best chance of stretching.  Then I read on another web site that if I didn't do this to her, her face might cave in. (Untrue, but I didn't know that until talking with other parents.)

I had to turn off the computer.  I grabbed Oli's little pink newborn blanket, buried my face in it and just cried.  I cried for myself, I cried for her, I cried for Kekoa and Seth.  I cried like I have never cried before.  I did not want to do this.  I did not want to have to put this little baby through procedures that would hurt her.

 What kind of a mother volunteers her baby for pain?

But, I didn't want her face to be deformed either.

I cried harder.

And then I picked her up and whispered "I'm sorry" again.

Sunday, December 16, 2012

And then....They just let me take her home

"In three words I can sum up everything I've learned about life: it goes on." -Robert Frost

Now I have answers to most of those questions.

No. She would never see her daddy's face.  But, she would see how beautiful his soul is every time he holds her close to his heart.  Every time he fiercely protects his baby girl.

Her brain appeared to be normal but, they would have to do a MRI to be sure.  This would not tell me anything about her cognitive function, however.  I did not realize back then that the words "her brain appears to be normal structurally" did not mean she would have normal cognition.  It turned out to be a blessing that I did not know that then.

Her kidneys were anatomically normal.  Except for some extra fluid in them called hydronephrosis and  something called vesicoureteral reflux. 

What the heck is that?

Pertaining to her story, it was pretty insignificant.  She ended up just having a few procedures and was required to take medication so she wouldn't get a kidney infection. Although the procedure called a VCUG, to test for the reflux, was traumatic for her it was probably more traumatic for me. She eventually grew out of it by the age of 3.

The hearing screen result was a little hairy.  The first screen they ran was normal in one ear and abnormal in the other the first time they did it.

You can imagine my reaction when the hearing screen person told us the results.  I will never forget the look on her face as she tried to be as gentle as possible explaining that they would have to test her again.

She knew that Oli was blind and I could tell that she wanted nothing more than to tell me my baby would be able to hear me.  She could see the look on my face as I silently pleaded with her to tell me the test was normal.

Please let her hearing be okay.

We will have to run the test again tomorrow. This does happen sometimes.  Sometimes we run the test too early after delivery and there is still fluid in the baby's ears.

She came back the next day and tested Oli again.

The results were normal.

She did hear all of my expressions of love. 
She did hear me when I repeated "I am so sorry" over and over again.
She heard me when I vowed to do absolutely everything in my power to ensure she had the best life possible.

And then the nurse came in and told me I could take her home.

Just like any other baby.  They told me to just take her home. 

What was I supposed to do with her next?
They were going to let me just walk right out of the hospital with her?
Were they crazy?
I needed a few more days!
I need to prepare.
I needed a battle plan, an army of soldiers to protect her from the world.
I needed to erect some kind of force field around her.
Wasn't there some sort of pamphlet they were supposed to  give me providing detailed instructions?
Wasn't someone going to tell me what the next step was?

I was absolutely terrified. 
The hospital staff just assumed that I would know what to do?
 Just because I was a NICU nurse?

 I was not NOT a nurse at that point.  I was a new mother and I needed support.  I needed to know there was a path that I was supposed to follow.  I wanted someone to direct me and tell me where to go.

I will let you in on a sad little secret of the special needs world.  Most people do not tell us where to go for help.  Nobody provides us with a list of all the services that our children can benefit from.  The services our children are entitled to.  I guess they think that when we get the diagnosis we automatically absorb this information through osmosis.  By being in close proximity to other special needs parents. 

Why doesn't anyone let us know?

Saturday, December 15, 2012

Would she ever see a sunset?

"Through the blur, I wondered if I was alone or if other parents felt the same way I did - that everything involving our children was painful in some way.  The emotions, whether they were joy, sorrow, love or pride, were so deep and sharp that in the end they left you raw, exposed and yes, in pain.  The human heart was not designed to beat outside the human body and yet, each child represented just that - a parent's heart bared, beating forever outside it's chest." -Debra Ginsberg

The next day the doctors performed a few tests on Oli.  One was a CT of her face to determine if she had any eyes or any abnormalities of her brain.  Another was an ultrasound of her pelvis to determine if her kidneys were present and normal.  And the last was a hearing screen.

It was so hard watching the nurse wheel my baby out of my room that Saturday morning.  I knew in just a few hours the results of those tests would be delivered to me and would determine her life, quality of life, or her death.  I couldn't think about the outcome of those tests anymore but, I couldn't not think about them either.

Would she be able to see her handsome daddy's face, admire a sunrise in the mountains, or see a sunset over the ocean in her daddy's beautiful Hawaii?
Or would she spend her life in darkness.

Was her brain normal?
Or would she spend her life confined to a bed, unable to ever care for herself and perform daily activities.

What about her kidneys?
Would they be missing or badly deformed and non-functioning?
Would she spend her life attached to a dialysis machine multiple times a week for hours at a time?
Would I be forced to administer numerous medications with harmful side effects in order to keep her alive?

Was she able to hear her sweet brothers voice when he called her his "bee-bee" and kissed her head?
Was she able to hear how many times I had whispered "I love you" into her ear?
Did she hear how many times I told her I was sorry that this had happened to her?
Did she hear me tell her that I would have offered God anything if He would allow me to trade places with her?
Did she hear me tell her that I wished it had been me that had been born blind and not her?

I didn't want to pick her up

"I may not have gone where I intended to go, but I think I have ended up where I needed to be." -Douglas Adams, The Long Dark Tea-Time of the Soul

I, however, was not so willing to accept my destiny.  I wanted to fight it, change it, punish it, scream at it, plead with it, bargain with it....Anything but, accept it.

I was left alone at the hospital with Oli when Seth had to go and drop Kekoa off back with his Grandma.  She was sleeping peacefully in her little clear plastic bassinet beside my bed.  I turned on the TV for a little distraction.  This turned out to be a very bad idea.

You know that new mommy/baby show that is on the hospital channel.  Yeah, well, I thought it would be a brilliant idea to turn that on and torture myself for a little while.  Watching all those cute babies and learning about their development.  They are smiling and cooing at the camera.  Their big eyes filled with the wonderment of the new world they've just been introduced to.

Would my daughter ever smile and coo?

Would she even live long enough to achieve this level of development?

These were the earth shattering questions that I felt the need to ponder at this moment.  Watching all those beautiful babies I started looking at my own beautiful tiny baby girl.  Beautiful but, different.

And then I was afraid of her.

This little 6 pound peanut.  I was suddenly afraid of her.  How could I possibly take her home and care for her?  How could I teach her?  I had never even met a blind person before.

I looked back up at the television monitor and wished with all of my heart that I could just reach through that screen and grab one of those babies.  I wanted to replace her with one of them.  One I wasn't afraid of.  I looked at her again.

I didn't want to pick her up.

But, then I did pick her up.  Because that's what mothers do.  We pick up our children and love them.  Even when they don't fit into our perfect little box of what we thought we wanted.  We pick them up and love them because they are our babies.

Friday, December 14, 2012


"Character cannot be developed in ease and quiet.  Only through experience of trial and suffering can the soul be strengthened, ambition inspired and success achieved." -Helen Keller

Destiny is a funny thing.  There are times in my life where I have hated it and refused to believe in it and there are times that I have witnessed it's amazing power.  Destiny is a strong word.  I do not say this lightly when I tell you that Kekoa was destined to be Oliana's big brother.

 This is the story about my 1st miracle.  What better way for a miracle to arrive than in the form of a little, 18 month old boy named Kekoa.

The day that the doctor gave us the awful news about Oliana's eyes was no doubt one of the most painful experiences of my life.  It was absolutely devastating to my husband and I as well as our families. It was devastating to everyone except one little boy.  One little bright light that happened to come to visit me that day to meet his new baby sister.

I had just finished telling Seth that our baby was going to be blind.  Kekoa was wandering around the hospital room playing with his favorite cars and periodically watching the cartoons I had on the TV.  After the tears were dried up and Seth and I had composed ourselves, I ask Kekoa if he wants to meet his new sister.  We had been practicing for months with a tiny toy doll and he was very excited to show us just exactly how gentle he could be.

 Seth picks him up so he can have a better view of her lying in the bassinet.  He asks Kekoa if he wants to give her a kiss.  He slowly nods his head yes and says "bee-bee".  Seth leans down and Kekoa gives his sister the sweetest little kiss on the top of her head.  He then asks to be put down on the floor.  Seth puts him down on the ground and.....

He starts walking around the room  with his eyes closed and his little chubby baby hands out in front of him.

He is pretending to be blind.

Somehow this little boy, a baby really, has this whole thing figured out in 20 minutes.  Tears that had been dry just a few minutes ago immediately race down my cheeks.  How does he know?

He then opens his eyes, turns around and looks at his 2 astonished parents.  He just looks at us like, "Yeah. So she's blind.  See I can do it.  It's no big deal."

I will forever love my son for the millions of gifts he has given me as his mother.  However, the memory of him walking that room with his eyes closed with be forever imprinted in my mind as one of the things I love the most.  It was the moment I realized that Kekoa was more than willing to accept his destiny.


"Sometimes when you pick up your child you can feel the map of your own bones beneath your hands, or smell the scent of your skin in the nape of his neck.  This is the most extraordinaary thing about motherhood- finding a piece of yourself separate and apart that all the same you could not live without." -Jodi Picoult

Obviously I wrote and published the previous post before watching the news. Terribly bad timing on my part. There is nothing funny about what happened today.  Sometimes you just can't laugh through things.  My thoughts and prayers are with the families of the victims.  I pray that they find peace and that their babies find peace.  Things like this happen and we are only left with questions and heart ache.
As a mother I cannot even imagine what those mothers are going through right now.  It reminds me even more to appreciate this amazing life that I have and my 4 beautiful children.  My heart absolutely breaks for anyone who has lost a child.  I have been through a lot with Oliana but, I do not believe that I would survive losing her. 


"The most wasted of all days is one without laughter." -E.E. Cummings

So I couldn't help but write a little note about my husband's reaction to my last few posts.  And then our subsequent laughter. Proving once again, you really can laugh at terribly sad things.

Seth was out when I wrote and published the last post.  I couldn't wait for him to get home so he could read it.  This one even made me tear up.  I'm not a big crier so I was shocked when I re-read the post and felt tears pooling in my eyes.

(How silly considering I wrote the thing!)

I was curious to see his reaction.  He is a crier so I knew he probably would. (Sorry honey but, you know you are.)  But I was surprised at our reaction afterwards.  This is how it goes...

Seth reads the post.  I am sitting there staring at his face as he reads it.  I am trying not to be obvious about it so I am pretending to clean up the kitchen.

(Shhh. I'm sneaky like that.)

He finishes.  Looks up at me with tears rolling down his face and says, "That's horrible!"

For a second I'm offended.  What?  Then I realize he's talking about that time in our life, not my writing.

I look at him with tears in my own eyes as that memory breaks the surface again and tries to taunt me.  Reminding me of how incredibly sad and helpless I felt then.

It only stays for a moment though and then retreats back into the cave where I have sentenced it to live in the back of my mind.  Those memories of complete sadness are not allowed out very often.

Then I look back up at Seth and our eyes meet.  We both burst into uncontrollable laughter.

ME- "That sucked!"

SETH- "It did suck didn't it!"

And then we laugh some more.  Because that's what we can do now.  I never want to go back to that place of grief but, sometimes it's a good reminder of how sweet the laughter can be.

Thursday, December 13, 2012

Watching Seth walk into the room that day...

"People are afraid of themselves, of their own reality; their feelings most of all.  People talk about how great love is, but that's bullshit.  Love hurts.  Feelings are disturbing.  People are taught that pain is evil and dangerous.  How can they deal with love if they're afraid to feel?  Pain is meant to wake us up.  People try to hide their pain.  But they're wrong.  Pain is something to carry, like a radio.  You feel your strength in the experience of pain.  It's all in how you carry it.  That's what matters.  Pain is a feeling.  Your feelings are a part of you.  Your own reality.  If you feel ashamed of them, and hide them, you're letting society destroy your reality.  You should stand up for your right to feel your pain." -Jim Morrison

I don't even know what to say.  It still makes my heart race and my eyes tear up when I remember him looking down at me lying in that bed with our baby girl next to me.  I'm sure I looked like a complete mess.  I had been crying and panicking.  Wondering when I was going to wake up from this nightmare.

He walked over to the bed with a panicked look of his own.

He knew.

He knew something was wrong with our baby.  I could see it written all over his face.  I was suddenly glad that I looked a wreck.  At least the first words out of my mouth didn't have to be...
"Sit down. I have some terrible news about the baby."

Nope. I just looked at his face and blurted it out.

"She's blind Seth.  They say she doesn't have any eyes.  Or if she does have eyes they're really small and they probably don't work.  She's blind.  Our baby is blind."

He put Kekoa down on the ground and did what any father would do. 

He began to cry.

Mother's Day

"Life shrinks or expands in proportion to one's courage." -Anais Nin

After the doctor left my hospital room that day I felt pain like I have never felt pain before.  I started questioning things that I have never questioned before and I began to ask the obvious question, "What the hell just happened to me?"  In a mere 10 minutes my entire life had changed.

The worst thing was, I had to be the one to tell my husband.  He didn't even know yet.  I had to tell this poor guy, who wanted nothing more than to give his children anything and everything in this life, that there were going to be things he wouldn't be able to give his daughter.  I was going to have to break his heart like it had never been broken before.  God damn that doctor for leaving me with this responsibility!!

As it was, though, I couldn't really think of anyone else who should tell him.  I surely didn't want that doctor to come back in here with his emotionless tone and his slightly bored attitude.  I didn't want that guy telling him that all his wonderful dreams of showing his daughter the beauties of desert mountains and Hawaiian sunsets were never going to happen. I had to be strong for him.  I had to pretend that I knew we were going to get through this.  And I was going to have to do it now because he just walked through that hospital room door.  He walked in holding my beautiful baby boy and an armful of balloons and flowers.  Because...it was Mother's Day weekend.

Wednesday, December 12, 2012

What did he just tell me?

"But better to be hurt by the truth than comforted with a lie." -Khaled Hosseini

Day Number 2: May 11, 2007

Seth left that afternoon to go pick up Kekoa (he was 18 months old) from his Grandma's house where he had been staying. He was going to take him back to our house for some lunch and a nap before bringing him up to the hospital.  The pediatrician, who I mentioned before, picked that lovely time to give me the news about my daughter.  He was the pediatrician on call that day.  This is pretty much how this event took place:

DOCTOR- I'm just here to take a look at your baby.

ME- Ok. I'm kind of worried about her eyes because she hasn't opened them yet.  I think they're just swollen, you know because I had been in pre term labor awhile and I'm sure that stressed her out and probably caused some swelling, but I'm sure she'll open them soon.  Maybe later today or tomorrow.  Do you think?  I'm sure there's nothing wrong.  They're just swollen. Right?

DOCTOR-  He just looks at me like he's mildly bored and somewhat irritated because I am rambling at this point.  I tend to ramble and talk really fast when I'm nervous.

ME- Are you going to look at her eyes?

He is looking everywhere else besides her eyes.  Her feet, legs, tummy, arms, nose, mouth.  Taking his sweet time at it too, I must say.  I just wanted to scream at him "TELL ME NOTHING IS WRONG WITH HER EYES YOU BIG JERK!!"
Finally he tries to open her eyes.  Oli starts screaming her head off like he is trying to rip her eyelids apart.  Which is essentially exactly what he was doing because they were literally fused together.
After trying this for a minute he puts the blanket back over her, straightens up and looks at me.

DOCTOR- Well, I think she has either really small eyes, or no eyes at all and she will be completely blind.  Microphthalmia is what it is called.  Do you have any questions?

ME- Mouth gaping open, tears in my eyes, looking back at him.  Do I have any questions?  Well let me see... I guess I have two.  Where did you get your medical license and where do you live so I can come rip your heart out while you are sleeping.  Like you just ripped out mine.

Did I have any questions?  What a dumb question.  Of course I had questions but, at that point I couldn't even remember my own name let alone think of a way to put together a question out of the millions of thoughts racing through my head.

ME- I don't know.  Have you ever seen this before?

DOCTOR- Once. 15 years ago.  A little boy that had Fraisers Syndrome.  We'll have to check her kidneys.  She might not have any kidneys.

ME- Staring at him again, mouth open.  Did he just say what I think he said? No kidneys?  That means death right?  I mean, I am a nurse and I'm pretty sure no kidneys means death.  Did he just tell me she might die?

DOCTOR- Ok then.  I'll order some tests and we'll let you know.

With that he promptly walked out of my hospital room leaving me alone with my new baby that I now thought might die.

Fix her

"Once you had put the pieces back together, even though you may look intact, you were never quite the same as you'd been before the fall." -Jodi Picoult

I used to get so mad when people would try to talk to me about "fixing" her.  They would say things like "You never know what the future holds. Someday they will invent a way for her to see".  I didn't want to hear any of it.  I knew they were just trying to give me hope and trying to get me to see the rainbow at the end of all this but, I couldn't hear it.  I again, being a -worst-case-scenario- girl, wanted to make myself believe that she would never be able to see.  Secretly, this was only part of me.  Secretly, I wanted to have hope.  Let's face it.  I am a nurse.  I wanted them to give her some kind of magical pill or hook her up to some kind of machine and fix her.  I just wanted so desperately to wake up one morning to a baby with vision.  I wanted someone to tell me what her future looked like and that she would be okay.  I had that tiny seed of hope for a little while.  Until one day I didn't.  Until one day the growing list of things wrong with her outweighed any hope I had of her living a "normal" life and the disappointment became too much.  Until one day, another doctor, another specialist, another therapist unknowingly squashed that little seed of hope like an insect they didn't even notice.  They never noticed that little seed of hope that I had for her future.

Let's talk about all of those specialists.  Let's talk about how to approach new parents of a special needs child.  First of all, if you're the pediatrician delivering devastating news to parents about their newborn, you should probably wait until both parents are present in the room.  Not tell the new, already hormonal mommy by herself in the hospital room.  You are changing somebodies life forever.  You are informing them of a death.  You need to be compassionate and gentle.  You need to have some kind of emotion.  Also, sometimes parents need a break in between all of the bad news.  You can't just sit parents down with a newborn and give them a 4 page list of everything they think, might be wrong with her.  I don't know.  Break it up a little.  Give us a coffee break.  Offer us some pastries.  By this I DO NOT mean send us back into your tiny overcrowded waiting room where we have already been sitting for the past 2 hours.  Your waiting room is not that cozy and I do not enjoy your uncomfortable chairs or your rude receptionist.  Obviously I'm not exactly sure how this should be approached with new parents.  But, I do know this.  They way it was done with my husband and I wasn't conducive to acceptance.

Tuesday, December 11, 2012

They didn't have a special needs mother hat in my size

"There's nowhere you can be that isn't where you're meant to be..." -John Lennon

I would love to talk about those first few days in the hospital after Oli was born as being beautiful and full of acceptance.  I would love to say "They told me she was blind and I immediately put on my special needs mother hat and began my new identity."  That's not exactly what happened.  I went through a lot in the first years of Oli's life to get me where I am today.  I wouldn't be doing her story justice if I just painted a pretty picture and pretended it wasn't hell.  Of course I loved her.  I've always loved her more than anything.  But that's been part of my problem.  I loved her so much but, I couldn't fix her.  I couldn't give her eyes or sight.  I couldn't take away all the hardships and pain that I knew were in her future.  I couldn't make society treat her with respect or hell, even a human being, as a special needs child.  I've had experiences with more than one doctor referring to her only as a diagnosis.  Talking to me like she was an object and telling me everything that could possibly be wrong with her and not to expect much.                                                                                          

  Lying in that hospital bed, after she was born, was absolutely the lowest part of my life.  Mostly because I am a -worst-case-scenario- kind of girl.  I can take a perfectly sunny day at the park and turn it into, an escaped convict jumps out of the bushes and kidnaps me where I spend the next 5 years locked in his basement forced to eat pickles and honey, in my mind.  That's just how my mind works.  I just wasn't ready to accept this life that had just punched me in the face.  She didn't fit into my perfect little box of what I wanted my future to look like.                                      

                     Now, let me say something about life that I learned at that moment.

 Life did not care that I had an 18 month old son at home.  Life did not care that I currently had a full time job to get back to.  Life did not care that I felt I did not deserve this.  Life did not care that I felt somehow cheated.  Life simply handed me this baby girl and said, "Ok. Here you go. Now what are you going to do?  Are you going to run away? Fight this with every fiber of your being? Or are you going to accept this and move on?"  Me being me, of course, I chose option number 2.