Archive | February, 2013

I Still Remember How You Made Me Feel

14 Feb

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Despite my negative experience with some of the doctors when Oli was born there was one more nurse who would make a profound impact on my memories of those 4 days in the hospital.

Her name was Sharon and she was my labor and delivery nurse.

She was a little bit older than me with exceptionally long, dark blond hair. She seemed to be just a step out of time with today and wore her bangs in a feathered style around her face. She was very sweet and one of those warm, compassionate people who make you feel like you’ve known them forever.

She encouraged me through out my labor and didn’t even bat an eye when I threw up moments before Oli’s birth.

“It’s okay. Happens all the time.” She reassures me, even though I am completely mortified having displayed my dinner to her and my OB/Gyn not to mention the NICU doctor I worked with.

After Oli was born she let me spend a considerable amount of time with her before taking her to the

nursery. She even apologized when she finally laid her in the bassinet to wheel her down the hall.

“I probably should have taken her down 20 minutes ago since she’s a little early, but it’s so important to bond with your new baby. Besides, she looks perfect.”

Two nights later as I’m sitting on the hospital bed I hear a faint knock at the door. Sharon peeks her head inside.

“Mind if I come in?”

“No. Please, come in.” I’m nervous as she sits down on the end of the bed and am wondering if she heard about Oli. It quickly becomes apparent that she has when I see her eyes fill with tears.

“Oh Shannon. I’m so sorry. One of the other nurses told me about your baby. I just couldn’t believe it.”

“I know. I’m still in shock. Thank you for visiting us.”

I’m trying to control my own tears now. Not just because I am again reminded of all that has transpired in less than 48 hours, but because I’m overwhelmed by the amount of empathy radiating from this woman who was a stranger to me two days ago.

“Do you need anything? Can I help you in some way?”

I just gave her a hug, told her thank you and assured her that it was okay and I would be fine.

I should have told her that the simple act of having the courage to walk into my room, cry with me and tell me she was sorry had done more for me than she will ever know.

I wish I would have known then, how that moment would make me feel 5 years later.

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10 Reasons To Give Up Newborn Hell

13 Feb

I know some mothers get really sad when they realize they are done having babies. I just want to give you some things to look forward to when you give up Newborn Hell.

1. Sleep. Oh sweet, sweet sleep. I think I forgot that word was in my vocabulary when I had babies.

2. Little purses. No more 50 lb diaper bags packed with 400 of your baby’s things and the tiniest wallet you can find crammed into the little front zipper.

3. Clean shirts. Good bye booger, throw up and drool stains!

4. Cute bras. No more nursing bras. Dear God! Could someone please make a cute nursing bra?

5. No more leaky boobs. You can now sit in the same room with another baby without checking to make sure your nursing pads haven’t shifted positions notifying everyone that you are the milk machine.

6. No more carrying enormous car seats everywhere. It was a fabulous day in my house when I sold my last child’s baby car seat. Why did I feel the need to leave her in the seat, carry it a mile through the parking lot, into the store or doctor’s office, only to lift her out and carry her on my hip and then the seat in my other hand? Why? I did though…every…single…time…

7. You can have sex again…like maybe even longer than 5 minutes. I don’t know about you, but every little sound on that baby monitor when my husband and I were…you know…. Instantly killed my mood. Oh, and the leaky boob thing didn’t help either.

8. Hot showers. You may now actually wait for the shower to heat up and stay in it long enough to get ALL of the soap out of your hair.

9. You get your living room back. Say good bye to the giant swing, exersaucer, play pen, floor play mats and bouncy seat that now dominate your living space.

10. If you’re lucky…very lucky, you may even get your sanity back. Months and months of crying, pooping, spitting up, not leaving the house and children’s music will take a toll on ones psyche. This is not a guarantee however. I am still looking for mine.

By the way…I guess I should mention that none of these actually apply to me except for the bras and the non leaky boobs because I still have Oli. The baby equipment in my house has now just been replaced with therapy equipment. That may be why I am continuing to search for my sanity;) But the bright side is I no longer have to tote a baby along for the ride!

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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?

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You Want To Put WHAT In My Mouth?

13 Feb

“Children aren’t coloring books. You don’t get to fill them with your favorite colors.”

― Khaled Hosseini

One of the most difficult things I ever had to teach Oli was how to eat solid food.

Seems like a pretty simple thing doesn’t it?

Just open up the little jar of green, orange, or tan puree. Get the spoon ready. The baby, at this point, is watching in anticipation because they probably know what is happening. They get that look of excitement on their face like, “Really? It’s my turn?”

Usually by the time the baby is old enough for solid food they have been watching big people eat for a few months and know what to do.

See food.

See spoon.

See mommy scoop up food.

See the spoon coming towards mouth.

Greedily open mouth as wide as possible.

Get food in mouth and then immediately insert fist in mouth too.

Because really, what goes better with baby food than baby fist?

At least this was my experience with my son.

I’m sure you spotted a few obstacles that I encountered when I attempted this technique with Oli.

I got the baby food jar out and the little rubber spoon and set them on her tray. I opened the jar and had the camera ready to snap the classic baby expression that comes with the first bite of real food. I scooped up the green mush, brought it toward her face and…nothing.

My face fell when I immediately recognized my mistake.

I put the food up to her lips and watched as she clamped her mouth shut when she realized that I was trying to put something in there.

“It’s food Oli. Food like mommy and daddy eat.” I gently try to coax her into opening her mouth.

Nothing.

My baby had absolutely no frame of reference for the word “food”. She’d never seen people eat, had no idea that this was something people do, and had no clue that she was supposed to open her mouth and chew when I spoke the words “food” or “eat”.

When Seth came home that night I greeted him at the door with a bewildered look on my face.

“She doesn’t understand what food is. She doesn’t know that she’s supposed to eat. All she knows is the bottle and milk. The spoon and baby food feel nothing like these. How do we teach her to eat?”

Seth just shrugged his shoulders and gave me the reassured look that only a father who has no idea of what to do, but is confident he can work it out, can give.

“We just do. We have to show her.”

Over the next week I tried to do just that. I tried to show her that I ate food and did not drink from a bottle. I would take her little hand and raise it to my face as I ate. I let her feel the fork or spoon layered with food as I raised it to my mouth, feel the motion of my jaw as I opened and closed my mouth and then chewed.

Then I would sit her back in her highchair and attempt to feed her again.

“Come on Oli. Open your mouth just like mommy does.”

Nothing.

Eventually I was able to squeeze past her tightly closed lips and get a small amount on her tongue. She immediately tried to spit it out and stuck out her tongue. I quickly jumped at this opportunity and put a spoonful on her tongue. Unable to spit out the entire glob she was forced to close her mouth and got a chance to taste it. She realized that it tasted pretty good, but then she thought that that was the way she was supposed to eat. Every time I fed her she would stick out her tongue and expect me to put food on it. This technique soon became frustrating for her because she never got much into her mouth and most of it ended up falling off and onto her tray.

I was frustrated and again met Seth at the door after work. This time with an exasperated expression.

“I don’t know what else to do. This is not working and I’m out of ideas. Tomorrow, it’s your turn to try.”

“Ok.” He answers with that confident look on his face again. But this time rather than finding it comforting or endearing I just fine it annoying.

I’m thinking, “You think it’s going to be so easy and I’m going to laugh when you figure out that it’s more difficult than you realize.”

The next night I get everything ready for Seth’s feeding attempt and get the “I told you so” look on my face.

He sits across from Oli and then does something completely unexpected. He takes her face in his hand and gently pry’s her mouth open and puts the spoon inside.

“Open your mouth Oli.” He says as he gently taps the spoon against her lips and then opens her mouth for her.

At first the food comes right back out being thrust onto the tray by her tongue, but after a few more attempts she starts to open her mouth on her own. Soon afterwards all we had to do was ask her to open her mouth and touch her lips.

Apparently his interpretation and my interpretation of “We have to show her” were completely different.

Thanks to Seth’s straight forward attempt to show her, my girl learned how to eat.

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I Thought I Was The Only One

12 Feb

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I began to think that all of the feelings in my heart about my daughter were terribly wrong. I was a loathsome, despicable mother for not just accepting who she was and continuing to battle with thoughts of alternate realities.

I began to hate myself.

I no longer believed that God had given her to me for a reason. Why didn’t He give her to an extraordinary mother who could just deal with this unexpected twist and not ritually beat herself up about what was wrong.

I felt small and worthless. Tired and overwhelmed. I felt like I was sinking on a slow leaking ship. I watched all of the other passengers confidently leap to safety while I remained steadfast, determined to somehow repair the damage or die trying. Everyone else was moving on, but I just couldn’t.

I loved her. I knew that I loved this little girl with all of my heart, but hated the fact that she had a disability. More importantly I hated that I hated that she was different.

I felt like I was all alone and that I was the only mother in the world with a special needs child who had experienced this sense of loss. I felt like I was the only one who grieved what might have been. Although I had all of these feelings in the beginning, as she got older they only intensified.

The weight of this emotional load began to get heavier and I grew weaker.

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Roller Coaster

12 Feb

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Each day came with an anticipation of ways to fill the day with two young children and ended with a feeling that I wasn’t doing enough. My mind was full of contradictions and confusion. I looked forward to going to work, but hated taking care of other people’s babies when mine seemed to need so much. I liked to stay at home with my kids, but I wanted to get out of the house and try to focus on something else. However nothing seemed to be able to tear my mind away from focusing on what I should be, could be, or would be doing if things had turned out differently.

Oli was actually a very happy and easy baby. When she learned to smile she smiled all of the time. She started to coo and babble, giggle, reach for toys, and bounce in her bouncy seat. She seemed to be developing as a regular baby despite her blindness. By the time she was 5 months old and meeting her developmental milestones I wondered if maybe the doctors were wrong. Maybe despite all of her quirks she was actually pretty typical. I still worried about her, but I had a little bit of hope again that her blindness would be her only hurdle in life. I was slightly more comfortable with the idea of her disability and even began to enjoy hearing stories about inspiring blind adults and children. I would think, Yes, Oli can do those things too!

But then I would remember that the specialists had warned me that the developmental gap between her and other children would only widen as she got older. My life had become a series of these highs and lows. I would just reach the top of one peak only to come crashing down the other side.

You see I was on a roller coaster ride and I couldn’t figure out how to get off.

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A dark and lonely road.

10 Feb

“The worst part of holding the memories is not the pain. It’s the loneliness of it. Memories need to be shared.”
― Lois Lowry, The Giver

As we left the doctor’s office I picked up my sweet baby Oli. I picked her up amongst all of the questions and uncertainty that surrounded her. I held the top of her head to my face and inhaled the smell of fear that came with her.

Oh Oli, what am I going to do? How am I going to get through this?

We drove back home and again the isolation of that house surrounded me. Oli was three months old now and it was time for me to go back to work. I desperately needed to get out of that house, but at the same time I was afraid to leave her. She had become my whole world. Every moment had been consumed with thoughts about her blindness and how I was supposed to help her. Every night I was scouring the internet for information on how to raise a blind child. I had even purchased a few books, seeming to be about a 100 years old

There should be more updated books on this subject. If the child on the cover is sporting extremely short cotton shorts and his mom has the feathered Farrah Fawcett hair, the book is probably a little bit dated.

However old, these books accompanied me to my first day back to work. I sat at the table in the break room with a strong cup of coffee and my feet propped up on a chair reading this musty smelling book. Topics included: how to encourage your blind child to crawl, encouraging your child to explore their environment, the importance of providing your blind child opportunities to touch different types of textures. I sat there reading this book while my co-workers chatted and laughed around me.

I was no longer one of them.

Could they see the pain in my eyes as I tried to laugh with them? Could they hear my heart breaking when I stopped to look at recent photographs of their children tapped to their lockers? Did they notice my annoyance when they tried to talk to me about mundane things?

I wanted to shout, “Didn’t you hear? My child was born without eyes! Why are you afraid to ask me about her? Why are you so scared to congratulate me?”

Not all, but a lot of people at work simply ignored the elephant in the room and said nothing. This hurt more deeply than being asked what I had shoved into her eyes. I wanted someone to acknowledge my pain. I wanted someone to take me by the hand, lead me away from the isolettes and ventilators and just hug me. Feel my pain with me. Cry with me.

As my break ended, I closed the book and silently walked back into the NICU. I peeked under the blanket of a tiny preemie lying in her bed. Born addicted to drugs, this tiny baby was screaming in discomfort. Her mother was nowhere to be found.

Didn’t this mother understand what a precious gift a healthy baby was? Didn’t she appreciate that she had somehow drawn a lucky card in the genetics department and had given birth to a baby without a disability? Why would she damage her child by doing drugs during her pregnancy? Did she have any idea how much I would have given for my girl to be born without complications?

I was beginning to get even angrier.

This was a very dark and lonely road that I chose to travel down.

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This One’s Broken

10 Feb

“The world breaks everyone, and afterward, some are strong at the broken places.” -Ernest Hemingway

The geneticist we saw was a large, friendly woman with a warm smile and a gentle nature. I was not quite as nervous when she asked if she could now perform a physical examination of Oli. I thought, “This woman is so nice she can’t possibly give me any more bad news.”

She started examining every inch of Oli’s little body and then offering phrases to her assistant. I was listening intently as she rattled off terminology to describe my Oli for her chart. Terminology that I was familiar with. I was starting to think that this woman wasn’t so nice.

“Extremely small eye sockets characteristic of microphthalmia and anophthalmia, hypotonia exhibited in all major muscles, microcephaly, congenital mid line defect, dysmorphic facial features.”

These words cut me to my core and left a painful gaping hole in my heart.

Dysmorphic facial features.

What? Are you trying to hurt my feelings?

I felt like someone had punched me in the stomach. How could she describe my beautiful daughter as dysmorphic?

Hypotonia in all major muscles.

So what if she was a little weaker than other babies? She could still catch up and get stronger.

Congenital mid line defect.

Mid line defect refers to the abnormalities associated with the fact that the neural tube failed to close properly when the baby was developing during the first trimester of pregnancy.

I hate that term. Mid line defect. I guess because it has the word defect in it and in turn implies that my girl was born defective. Like some sort of toy or kitchen gadget that fails to work properly when you plug it in. I couldn’t just return my girl to the factory and demand a refund. I couldn’t look at God and say “Sorry. This one’s broken. Send me a new one.”

Satisfaction is not guaranteed with children and I refuse to view my daughter as defective.

I told you I was sensitive.

Microcephaly.

She has an unusually small head. I pointed out to the doctor that I seem to also have a small head. I told her that I was able to wear my 9 year old step daughter’s bike helmet. Although, my husband has a huge melon (sorry honey) and I would think that between the two of us it would have balanced her out genetically.

She explained that while Oli was probably prone to having a smaller head because of me, it was more than that. Oli’s head measured below the 5th percentile on the growth chart.

“What does that mean in terms of her development?” I asked quietly.

“It can mean any number of things. She could develop normally or it could mean some mental retardation. Usually with microcephaly we tend to see some form of MR.” She replied honestly with sympathy in her voice.

That was when the fear for Oli’s future really took hold. I was already terrified of her facing the world without any sight but, now I had to think about her learning capacities as well.

Combined with all of the other things we had learned about her, it was starting to look like my girl was not just blind.

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Did You Make Her Blind?

9 Feb

“Bad things do happen; how I respond to them defines my character and the quality of my life. I can choose to sit in perpetual sadness immobilized by the gravity of my loss or I can choose to rise from the pain and treasure the most precious gift I have- life itself.” -Walter Anderson

We ended up not having to wait as long as was predicted to see the geneticist. It turned out that the nurse practitioner I worked with was able to pull some strings and get us in a few weeks after Oli’s second conformer appointment.

After visiting with the geneticist we actually began to ponder the absurd questions that she asked us. Questions that I’m sure have to be asked when a child is born with a birth defect.

“Was there any possibility that Seth and I were related? ”

Was there?

How silly, but in that moment we paused and had to wonder.

I was from Iowa and Seth’s father was from Iowa.

Was it possible?

After thinking about it for a second we realized how crazy that was. Of course we were not related.

“Is it possible that I contracted some sort of disease very early in my pregnancy?”

A few people at work in the NICU had also asked me this. Was it possible that I picked up a bug at work and it made Oli the way she was?

That was an awful question to be asked.

Did I somehow “make” her blind?

I honestly didn’t know. I didn’t think that I had unknowingly transported some kind of harmful virus to my unborn child, but I couldn’t be sure.

Was it my fault?

I was supposed to provide a nurturing environment for her to grow and develop properly. I had obviously failed to do this. Maybe it was my fault?

“Did we have any history of blindness or any other birth defects in our family?”

“No. Not really.”

“Not really? Can you please list everyone in your family who was born different in any way.”

We gave her our family history. Let me tell you, after Oli was born I was looking at everything and everyone as a possible explanation to what had gone wrong. We were listing absolutely everyone with any kind of odd feature, behavior, or characteristic. I was thinking about second cousins who I remembered chewed their food weird at the dinner table, or a distant uncle who talked just a little bit too loud for normal conversation.

My family has a history of bad eyesight. I actually had the thought,

Well, maybe my genes deteriorated to the point that her eyes were so bad they just couldn’t develop.
(Yeah, sometimes my mind went a little nuts.)

Family members also gave us their opinion as to what might have happened.

My step daughter, who was 9 when Oli was born, wondered if her eyes didn’t develop because she was born early. We assured her that wasn’t the reason.

My mother thought maybe it was because her family had decided not to donate my grandmothers corneas when she passed away.

Some people in my husband’s family wondered if it was because I had named her Oliana. Oliana is translated to “oleander” in Hawaiian.

Maybe I had destined her to be blind by naming her after a poisonous flower.

Of course, all of these theories were completely ridiculous. Everyone was just looking for an explanation. That’s what happens when tragedy strikes. People start questioning why?

Why did this happen?
Sometimes there are no answers.

In my heart I knew that I had not caused this. I knew that I hadn’t married a distant relative, contracted a disease, passed it on through bad eyesight, pissed off God, or destined her to blindness with a name.

I knew that it had just happened.

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5 Ways That Motherhood Has Changed Me

8 Feb

1. I can’t stand silence.

I used to revel in the silence. Now if no one is crying, giggling, arguing, singing or asking me a thousand questions I feel like the apocalypse may have happened and I was left behind.
I also can’t stand it because I know what it means. . .someone is coloring on the walls, making hair and dresses out of the toilet paper, or gluing my new earrings to paper.

2. I cook

No, I don’t cook well. But I do cook. Before I had kids cooking consisted of pouring a bowl of cereal and adding milk. Now I am like a mad scientist. You can find me in the kitchen whipping up concoctions, smoke billowing from burning pots and pans and children begging me for McDonalds. (They just haven’t developed their pallets yet to appreciate my cooking.)

3. Drool no longer bothers me.

I seriously had a major hang up about drool when I was pregnant with my first child. Thick, drippy, smelly, liquid constantly hanging from a baby’s mouth was one of my phobias. Gross. I never thought I’d get used to it. Now I don’t even think about wiping my kid’s mouths with my shirt, pants, hands, arm, or the nearest toy or baby blanket if it suits me. Sometimes I’m sneaky and wipe one of my kid’s mouths on the back of my other kid’s shirt. Excellent reason to have multiple children. You never run out of clothing surfaces to wipe faces on.

4. I don’t sleep.

Ok I do sleep, but I definitely don’t sleep like I used to. I used to close my eyes and be completely comatose until my alarm went off the next morning. Now I am on night time mommy watch 24/7. I hear a cough, sneeze, or fart in the night and I am suddenly the world’s fastest, sneakiest spy. I creep into their room, find out which one made the sound, decipher if it needs further investigation and then escape like Houdini before I am spotted by the enemy.

5. I think yoga pants and pajamas should be a strictly enforced dress code for stay at home moms.

Before I had kids I wouldn’t have been caught dead without my hair brushed, make up on and a properly thought out wardrobe. Now I think. . .Why do I have to get dressed to go to the grocery store? Why do I need to put on my “good jeans” (you know. . .the ones that don’t make my ass look like a deflated saggy pillow) to go sit in a circle with 15 other toddlers, singing The Wheels on the bus, coloring happy faces and trying to keep my kid from gluing the picture to the table? No my good jeans are reserved for the times when even my pallet is too underdeveloped to appreciate my cooking and we need to go to out to eat. I mean really out to eat. Like going to McDonalds and forgoing the drive through to sit in the exceptionally fun play room. I mean Playscape. . .yes, my jeans must be worn to the Playscape. If for no other reason than to provide a thicker barrier between my knees and the pee soaked tunnels my kids ask me to crawl through.

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