Tag Archives: blind

Total Mommy Meltdown

17 Feb

“There’s no bitch on earth like a mother frightened for her kids.”

― Stephen King

Finally after what seemed like hours of waiting in those little blue plastic chairs and watching cartoons on the Disney channel in the kids play room, the nurse called my name from the doorway.

“You can go back and see your daughter now. She’s awake, but we just got her into the recovery room. Normally I wait to bring families back until the kids have been there a little while, but since you work here I made an exception.”

I thanked her profusely for letting me go back early, but then was wishing she had waited a little bit longer as I rounded the corner and could hear Oli screaming at the top of her lungs from the end of the room.

I quickened my pace to get to her bedside and then looked at the recovery room nurse as she straightened out cords and tried to get her connected to the monitors.

“Aren’t you going to give her some pain medication?” I ask the obvious question when ones child has had surgery and then is screaming like they are still slicing off some major body part.

“Yes I’ll get her something in a minute.”

In a minute? Can’t you hear her pain? This purple color is not the normal hue of my daughter’s face.

I know what it’s like to be the nurse and have anxious parents breathing down my neck, but come on lady. I understand that you are busy and it is obviously important that you straighten out these cords (for some reason unknown to me), but give her something. I think she might be dying.

She finally untangles the last knot in the stream of medical cords and saunters off to get Oli pain medication.

By the time she came back I don’t think I had ever seen Oli quite the color that her face was now. I had no idea, until that moment, that human skin could turn that color. Her face had a kind of red, purplish tint that only the truly pissed off baby can become.

Now I am quite familiar with it. Now I know that when Oli turns that color I better get the hell out of her way in about 10 seconds because she may spontaneously combust. Or try to bite, scratch or beat me to death. Good thing my peanut is only 40lbs soaking wet and has yet to actually hurt me. ( She is usually very sweet. I promise… Except when she’s not. )

The nurse gave her some medicine and Oli eventually quieted down and went to sleep.

“This is normal. Sometimes children have that kind of reaction to the anesthesia. She should be better after a little while.” The obsessive compulsive nurse tells me.

“Okay.” I am thinking yes, I realize that, but it does not give me any comfort because I am watching my baby have a total and complete meltdown and therefore am well on my way to total meltdown phase myself. Watching her scream louder than I have ever heard her scream does not in any way feel “normal” to me.

However, thank you for trying to reassure me.

I don’t feel any better.

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Airing Out My Bitchies

16 Feb

Today I am tired of trying to be upbeat and optimistic. Although I usually am (or at least try to pretend to be) most days because it just feels better, today I am not. Today I am gloomy Mcgloomster and I don’t want to pretend or try. I was going to FB about it, but then I thought “Shit. Isn’t this what the blog is for? Letting my bitchiness all hang out.”

I think my morning started off badly when my demon child, lovely 2yr old daughter, woke me up at 5:45am by jumping on my head screeching at volume 1,000 “MOOOOMMY! I’M DONE SLEEEEEPIIIINNNGGG!”

I will now need to add search for hearing aids on my list of To Do’s today.

After begging, pleading, bargaining, yelling, and cursing at her to please go back to bed until at least 6:45, I pouted and reluctantly stomped down stairs. She didn’t hear any of my pleas because apparently when she realized mommy was in a bad mood she high-tailed it to her happy place. I found her sitting in her favorite spot. Inside the TV. Girlfriend could not possible sit any closer to the thing if she tried.

After turning on Mickey Mouse (good thing that crap comes on early) I made coffee and proceeded to drink somewhere between 3 and 10 cups. I lost track after my 3rd trip to the bathroom. It’s my own fault for staying up so late. I seem to have developed an unhealthy obsession with shows about the paranormal. Apparently I am not the only one because every month Syfy, the Travel Channel, Bio, and every other channel on cable has added a new ghost show to their repertoire. Last night it was Ghost Adventures and The Dead Files.

This stuff is serious….and I am fascinated. It drives my husband bonkers. Sorry honey. It’s a hobby? Of course I can’t watch anything during the day so I am forced to stay up late into the night scaring the crap out of myself. See Ginger? The reason mommy is in a bad mood is because you force me to watch ghost shows at night.

After spending some quality time on Facebook I decided that I needed to get out of the house. Air out my bitchies. My mom came over and we took the three kids to the park. It was good and I felt better. Oli had fun driving her little swivel car. Ginger and Koa ran around screaming and throwing sand. I decided to take Oli down the slide. It sounded like a good idea until I turned around and discovered two other children had also decided to go down the slide.

My immediate thought was “Children, please don’t say anything stupid to me about Oli because I’m just not in the mood for lovely flower and cupcake responses.” Kids are always asking questions about Oli. Usually they are just curious. Sometimes they’re mean, but that doesn’t happen very often. Today, I just didn’t want to deal with it. I can’t remember the last time I went to the park with Oli and someone didn’t ask questions about her.

Why doesn’t she talk? Why doesn’t she walk? What’s wrong with her eyes? Is she a baby?

Normally I just tell them that God made her different and that she is blind. I’m nice and friendly. Honestly I would much rather have them ask me questions than just stare at her. Today I was just tired. I just wanted to be able to have fun at the park with her with other kids around and not have to answer questions.

So when the little girl came up to me and asked why she doesn’t talk I just responded “She just can’t.” I did smile, but then turned my back and walked away with Oli.

I feel bad. I really do. But, today I just couldn’t do it.

Today I am tired. And today I am tired of the questions and stares.

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Please Don’t Let Her Arm Fall Off

16 Feb

“Sometimes beautiful things come into our lives out of nowhere. We can’t always understand them, but we have to trust in them. I know you want to question everything, but sometimes it pays to just have a little faith.”
― Lauren Kate, Torment

Fortunately because my two small children were in the car with us that cold day in January it ensured that my husband’s enthusiasm for an adventure took a back seat. We made it to Oli’s surgery appointment unscathed, unstuck and virtually un-traumatized.

It was scary riding with a driver who was unfamiliar driving in the snow on gravel roads in the middle of the desert, but Seth was cautious. We got to the hospital 2 hours late to her appointment. I had gotten a hold of the surgeon when we realized that we were going to be late and she told us to go ahead and come whenever we could.

They prepped Oli for surgery and the nurses whisked my baby girl off to the operating room shortly afterwards. We were assured that Oli was in good hands and were sent to the waiting room.

I had never been the parent of a patient before Oli was born. One time I had to take Kekoa to the ER when he was 4 months old because of a high fever. We were only there long enough to make sure he didn’t have an infection and then left.

This was nothing like that.

I knew they were going to be cutting into my baby, however minor the operation was.

THEY WERE GOING TO CUT INTO MY BABY!!!

I had been involved in lots of surgeries with babies before Oli, but none was my child. My heart went out to all of the parents who had sat in those little plastic chairs before me.The parents that I myself, had sent to the waiting room when I was the nurse on duty the day of their child’s surgery. Many times I spoke the exact same words spoken to me that morning, “She’s in good hands. Everything will be fine.”

Of course there are no guarantees. I knew that. I was terrified.

The few hours it took to perform the operation and get Oli into the recovery area were some of the longest hours of my life. Oli has had a few other surgeries since then and it never gets any easier.

Remember I am a worst-case-scenario girl.

I worry about everything from a complete power failure when my girl is still on the ventilator and unconscious down to worrying that the nurse didn’t properly swab her IV port before injecting medication into it and subsequently she gets a terrible bacterial infection and her arm falls off.

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It’s awful!

Luckily none of those things has ever happened.

I want to trust people taking care of Oli. I really do. Most of me has to or else I would drive myself crazy, but this is my baby girl. I can’t trust them completely. I don’t think any mother ever does.

Moms worry about our children the moment we realize we are having them. It’s not any more difficult, I don’t think, when you have a child with special needs. We are just given more opportunities to worry. And we are given more opportunities to trust people and have a little faith in them. Sometimes they let you down, but most of the time they don’t.

Most of the time my imagination is far worse than reality.

Good thing!! Otherwise my girl would defiantly be missing a few limbs by now.

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Getting Rid Of The Reflux

14 Feb

“While we try to teach our children all about life, our children teach us what life is all about.”

― Angela Schwindt

Finally when Oli was 7 months old we made the decision to surgically fix her GI reflux.

I could no longer watch her struggle to keep her food down. Despite thickening her formula, a strict regimen of reflux medication and eating baby food, the reflux was not improving.

We had to wait several months before making this decision because she didn’t fit into her GI doctors normal category of surgical patients. She was still gaining weight, growing, was at that time still sleeping, and was not screaming most hours of the day. The exact opposite of most of his patients.

He kept putting off the idea of surgical intervention until one day when I brought Oli in for her monthly check up.

“How is she doing?” He asks quietly. He was a tall, gentle, soft spoken man with an awkward personality.

“Well not to good. This cannot be normal.” I tell him. Frustrated with her lack of response to his treatments, my goal today is to show him how miserable it was for her. I laid Oli face down on the crisp, white exam paper.

“Now just watch.” I say as I encourage Oli to lift her head. This was an ongoing struggle for her because of her lack of visual motivation,. But also because every time she exerted any abdominal force whatever was in her stomach seemed to become pressurized and shot out her nose. As he is looking down at Oli she performs right on cue. A thick stream of chunky old milk, tinted green from her lunch comes out her nose.

“This happens every single time I put her on her tummy. You have to do something.”

“Yes okay. I guess it’s time to look into surgery.” He relents.

“Great. I know a pediatric general surgeon who I’m comfortable with. I’d like him to perform the surgery because I know he won’t put in a G-tube unless she absolutely needs it. I don’t think she needs one and he agrees.”

A few weeks later Oli had the surgery. She did not need the G-tube. I was happy that I had found a doctor willing to listen to me and not just put one in, as was the general practice.

One week after the surgery she began sitting up and was finally comfortable lying on her tummy.

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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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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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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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