Tag Archives: sadness

Stop picking her apart!

1 Feb

“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.

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.

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Will she forgive me?

30 Jan

“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?

As long as nothing else is wrong…

29 Jan

“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.”

Life…it’s not always easy

28 Jan

“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.

Babykoababyoli1

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 sobbed.

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.

It was blue.

27 Jan

“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.

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.

Isolation

27 Jan

“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.

A medieval torture tactic

26 Jan

“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 ophthalmologist.

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.

Would she ever see a sunset?

25 Jan

“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.

24 Jan

“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.

I started watching the new mommy/baby show that is on the hospital channel. I guess I felt like torturing myself for a little while. Watching all those cute babies and learning about their development. They were 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 at a camera and coo like a normal baby?

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.

Destiny

24 Jan

“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.

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