Tag Archives: fear

Can You See Me? I’m Here In The Darkness. (Part 1)

22 Feb

I had the AMAZING opportunity to eat dinner last night at the Blind Café. Dinner and music in the complete darkness.

“Hold on to the shoulder of the person standing in front of you. Okay. Everyone ready to experience the Blind Café?” The woman at the front of the line leading us into the darkness has an advantage. An advantage that normally, in the sighted world she lives in, is a disadvantage. The woman in the black dress, holding a long white cane…is blind.

I quickly introduce myself to the woman in front of me and hold tightly to her slim shoulder.

The line begins to move. I walk behind a heavy white curtain and am immediately plunged into pitch blackness. As I took my first blind steps into the café my heart started pounding in my chest. I didn’t know where I was and I didn’t know where I was going. I simply had to trust the woman in front of me and hope that I didn’t walk into anything or fall over.

“Watch your head!” the woman in front of me suddenly shouts.

“What? Where?” I am ducking my head and swerving to avoid an unseen attacker.

“Left? Right? Where is it? What am I watching out for?”

No details are given. Those were the beginning moments that made me acutely aware of the importance of descriptive details when speaking to Oli about her surroundings.

We all follow in line until we reach our table. Our blind waiter begins to help each of us find our seat. We were told that our food would already be waiting for us on the table. I cautiously sit down and move my hands across the table.

What am I touching?

I have no idea.

There’s some squishy stuff to my left at 10 o’clock. There is a bowl of little balls and a short, fat, cone shaped object beneath the squishy stuff. The plate in front of me has a large, papery thing on it with a stick poking out of its center. Above that is more wet squishy stuff on little flat circles. Someone at my table said that there was bread in the middle of the table. I slowly reach my hand out and above my plate. I find more little balls. I move to the right. What is this? It’s slimy and wet. Now my fingers are dripping with a slimy oily substance. Where is my napkin? Did they give us napkins? Do we have utensils?

I search to the right of my plate and thankfully find my napkin. I also find a plastic fork. I contemplate using my fork to try and stab at some of my food and then quickly realize how pointless that seems. It will be way more efficient to use my fingers. Beside how will I know what I am eating unless I actually pick it up with my fingers? I find the bowl of little balls again and search for the cone shaped thing. I find it and decide to pick it up and smell it. My senses should be enhanced right? Since my vision is gone. Wrong. Total myth! I can’t smell it at all. It smells like something, but I have no idea what? It smells like my fingers and whatever that slimy stuff was.

After touching everything on my plate and probably everything on my neighbor’s plate too, I couldn’t tell where my food stopped and hers started, I decided to taste something. I find the squishy stuff on the flat circles and pick one up. I identified the circles to be crackers. I could feel the salt and circles. I raise it to my lips and take an apprehensive bite. Olives! Aaaccckkkk!! I HATE olives. The squishy stuff was some kind of spread. I don’t know what else was in it, but I could taste olives. I put the cracker down. Do I have a drink somewhere around here to wash the nasty olive taste from my mouth? I feel my way a little farther to my left, past my plate. I find a water bottle. Of course, I didn’t know it was water until I took a sip.

Moving on.

I’m really getting brave with my hands now. I find the bowl of balls again. I pick one up and pop it in my mouth. A grape. Yay! Win!

I pick up another ball. I think it’s another grape. Wrong. Olive! What-Is-With-The-OLIVES!! Tricky, sneaky, blind café.

FYI. An olive feels like a grape.

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.

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.

imagesCA2CPZPC

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.

A Young Nurse

13 Feb

imagesCABIVG4B (2)

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?

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.

Why would He do this to me?

1 Feb

“We love the things we love for what they are.”

― Robert Frost

HPIM0597

I really should have put this picture at the beginning of my story. This is Kekoa and me in the background. Yes, I was about to cry when it was taken. The picture accurately emphasizes and portrays everything that is me. When I look at it I see someone who looks absolutely terrified of the reality that has just come out of her body. Why God would choose to give someone like this a special needs child is beyond me.

I mean look at me.

I was a wreck and he was fine.

When we got home from the hospital my husband loaded the pictures from the delivery onto the computer. He pulled up this one and burst out laughing. “Look at your face! You look like you are convinced that the nurse is really a child predator and is about to run off with your baby.”

I came over and looked down at the computer screen. Yep. That is exactly what I was thinking. “Don’t laugh. I just love him so much.” I try to explain very near the brink of tears. How can he not understand? I mean this little person just came OUT OF MY BODY! I made this little guy and he is perfect. It all just became so real. When they’re in your body it’s just a faint idea. Especially when it’s your first. Once they actually come out it’s a whole new ball game.

I think I look the way I do here for a couple of reasons.

First of all, I was totally mortified by the whole child bearing experience. The gush of body fluids, squishy stuff and baby from my body was beyond embarrassing.

How would my husband ever look at me the same?

Second, I really hadn’t given the whole idea of baby = with you the rest of your life, a sufficient amount of contemplation. I just wanted a baby. But once I looked into his eyes and felt a kind of love that I had never experienced before, I knew that I was in trouble. My heart felt like it was bursting with love and breaking with fear all at the same time and either way I looked at it I was in danger of literally loving this little guy to death.

Once the nurse placed him on my chest, cleaned him off, and then took him away to the warmer to wrap him up and snap this picture I was totally and completely smitten.

I also started feeling other things that I had never felt before. A fierce protection of my little boy that was almost crushing when the nurse took him from my arms.

In the picture I am looking at the nurse like “OMG you are totally going to break him. I do not trust you at all. Give him back. Give him back before I cry.”

In what world does it make sense for Life to give this kind of mom a special needs child? I couldn’t handle the thought of raising this little guy, who was completely normal.

Can you imagine the picture of me after I found out that Oli was blind?

Or maybe this picture explains completely why I was given a special needs child…

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.

And then….they just let me take her home.

25 Jan

“In three words I can sum up everything I’ve learned about life: it goes on.” -Robert Frost

Now I have answers to most of those questions.

No. She would never see her daddy’s face. But, she would see how beautiful his soul is every time he holds her close to his heart. Every time he fiercely protects his baby girl.

Her brain appeared to be normal but, they would have to do a MRI to be sure. This would not tell me anything about her cognitive function, however. I did not realize back then that the words “her brain appears to be normal structurally” did not mean she would have normal cognition. It turned out to be a blessing that I did not know that then.

Her kidneys were anatomically normal. Except for some extra fluid in them called hydronephrosis and something called vesicoureteral reflux.

What the heck is that?

Pertaining to her story, it was pretty insignificant. She ended up just having a few procedures and was required to take medication so she wouldn’t get a kidney infection. Although the procedure called a VCUG, to test for the reflux, was traumatic for her it was probably more traumatic for me. She eventually grew out of it by the age of 3.

The hearing screen result was a little hairy. The first screen they ran was normal in one ear and abnormal in the other the first time they did it.

You can imagine my reaction when the hearing screen person told us the results. I will never forget the look on her face as she tried to be as gentle as possible explaining that they would have to test her again.

She knew that Oli was blind and I could tell that she wanted nothing more than to tell me my baby would be able to hear me. She could see the look on my face as I silently pleaded with her to tell me the test was normal.

Please let her hearing be okay.

“We will have to run the test again tomorrow. This does happen sometimes. Sometimes we run the test too early after delivery and there is still fluid in the baby’s ears.” she told me as gently as possible.

She came back the next day and tested Oli again.

The results were normal.

She did hear all of my expressions of love.

She did hear me when I repeated “I am so sorry” over and over again.

She heard me when I vowed to do absolutely everything in my power to ensure she had the best life possible.

And then the nurse came in and told me I could take her home.

Just like any other baby. They told me to just take her home.

What was I supposed to do with her next?

They were going to let me just walk right out of the hospital with her?

Were they crazy?

I needed a few more days!

I need to prepare.

I needed a battle plan, an army of soldiers to protect her from the world.

I needed to erect some kind of force field around her.

Wasn’t there some sort of pamphlet they were supposed to give me providing detailed instructions?

Wasn’t someone going to tell me what the next step was?

I was absolutely terrified.

The hospital staff just assumed that I would know what to do?

Why?

Just because I was a NICU nurse?

I was not NOT a nurse at that point. I was a new mother and I needed support. I needed to know there was a path that I was supposed to follow. I wanted someone to direct me and tell me where to go.

I will let you in on a sad little secret of the special needs world. Most people do not tell us where to go for help. Nobody provides us with a list of all the services that our childrn can benefit from. The services our children are entitled to. I guess they think that when we get the diagnosis we automatically absorb this information through osmosis. By being in close proximity to other special needs parents.

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.

thecrumbdiaries

Logan is challenged but not limited, and he is living his life like a boss. I am just lucky enough to be along for the ride.

Mommy Got Her Groove Back

How a new mom, and wife does parenting and daily life.

Lessons from my daughter

Although all doctors agreed she would do nothing.....

I'm fine, but my Mommy has issues!

Raising a daughter with special needs.

Living on the Spectrum: The Connor Chronicles

Our family's adventures in the world of ADHD and Autism.

Parenting And Stuff

Not a "how to be a great parent" blog

The Third Glance

A peek into my (Autistic) mind

One Stitch At A Time

Making my way back in time.

Disability Watchdog

Exposing Injustices for Vulnerable People

My thoughts on a page.

Living, Laughing, Loving, Loathing.

It is Well...with my Soul

Sure, my hands are full. So is my HEART!

Chopping Potatoes

And other metaphors for motherhood

This is the Corner We Pee In

Bulletins from the Parenting Trenches...

clotildajamcracker

The wacky stories of a crazy lady.

This is the place

visiting places where writers were born, lived, loved & are buried.

My Dance in the Rain

The journey of my life, my path to redefine myself and a special little girl with Cri du Chat Syndrome and Primary Ciliary Dyskenisia who changed it all.

Prego and the Loon

Pregnant and Dealing With Domestic Violence

%d bloggers like this: