Tag Archives: cry

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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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.

He began to cry.

23 Jan

When I think of that moment 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.

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