Tag Archives: fine

Fine-Garbage, Happy-Lie Vomit

3 Mar

When I reread my old blog sometimes it strikes me as funny and sometimes it just strikes me as sad. I think I honestly believed all of the things I wrote back then. I believed that Oli was learning to walk and talk. I believed that it was still possible for her to just one day catch up to other children her age. Even though by the time she was 2 it was clear that she would not.

I was probably moving into denial at that point. I bounced around the first 3 stages of grief frequently in the beginning of Oli’s life. One moment I would be in denial and isolation and the next I would be angry. And then I would move into bargaining only to be swung back into denial. Most frequently I found myself in depression. Only recently have I moved on to acceptance and haven’t looked back since.

I didn’t know any of this then though. I didn’t consciously realize that I was grieving and nobody told me.

I thought maybe I just had bad coping skills (which I did) or that I was a bad person and a bad mother.

To combat my inner feelings of inadequacy, I told the world that everything was amazing. I tried to convince them that this was my lot in life and I whole heartily embraced it and was moving forward. I tried to convince you so maybe I would begin to convince myself. I thought that the more I tried to sell everyone on my fineness, the more fine I would eventually become.

It didn’t work out that way at all. The more I lied and faked happiness the more alone and miserable I became. By not letting anyone in, I isolated myself so deeply that I became entrenched in the quicksand of grief. Every move I made and word I spoke sucked me down and eventually had me suffocating on my own fine-garbage, happy-lie vomit.

As I move forward and continue my story I have to read the old blog to A.) remember what the hell happened 3 years ago because so much has happened since and B.) because it reminds me of that grieving process and I can clearly see it now in my writing. I can read a post from back then and see: lies, hope, sadness, fear, optimism, bargaining, pain, denial, anger, and a sense of being lost.

The one thing I don’t see in any of the old posts are real, genuine feelings. I see a bunch of words on a computer screen attempting to fool the world into believing that I was okay.

In the history of humanity, there was probably no bigger untruth.

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A Young Nurse

13 Feb

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As Oli began to eat baby food I realized that her GI reflux, which I had been assured would dissipate when I introduced solids into her diet, did not diminish at all. The only difference now was that the things coming out of her mouth and nose were colorful instead of milky white.

When I think about her reflux I remember a young nurse assigned to us in the mother baby unit in the hospital.

It was a few hours after Oli was born and I was finally asleep. The nurse came in to check on us and woke me up indicating that something was wrong with her. I sat up and saw her turning Oli onto her side as she gasped and snorted through a nose full of milk.

“She is spitting up pretty bad. You have to keep an eye on her and keep her on her side. Here, use this to suck the milk from her nose and mouth.” She says as she hands me the little blue bulb I would become very familiar with.

Although this is fairly common and happens to newborns something about the way she looked at Oli that night sent alarm bells ringing through my heart. She had that look in her eyes of a nurse who knew something was wrong, but couldn’t quite put her finger on it. The way she looked at me as she turned and switched off the light said more than her words could have expressed.

I’m concerned about your baby girl. I’m young and intimidated because I know you are also a nurse, but look at me and recognize that something is off.

Of course, I was still deeply submerged in denial and ignoring those alarm bells. I wouldn’t find out until the next day that Oli was blind and I wouldn’t know for another three years that her reflux was linked to another devastating diagnosis.

I just smiled confidently, tucking my covers under my arms as she walked out of the room and assured her that I would watch her closely.

I wonder if that nurse heard later that her instincts were correct?

The doctors opinion

1 Feb

“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.

Pretending

28 Jan

“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

Insecure

Neurotic

&

Emotional

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.

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