Tag Archives: pain

So I run

5 Aug

It’s been 6 months since I’ve written.

Probably even longer since I’ve written anything with 100% honesty in my heart and left it all out here on the page.

It’s been 8 months since I got divorced.

It’s been 1 hour since I decided to not let the fear of who might read what I’ve written stop me from being true to myself and writing what I need to, to cleanse my soul.

Running and writing do that for me.

I get a lot of flack from people for running and working out as much as I do. I run almost every day. Lift a couple of times a week and compete in triathlons.

“Why do you run? Why would you do triathlons? That’s so much work! You must like pain and suffering.”

Maybe I do.

I swim until the muscles in my shoulders and back ache. I ride my bike until my legs and butt burn so bad that I can’t crank the pedals one more turn. I run until the sweat drips from every inch of my skin.  I run until the pain in my heart becomes as numb as my legs.

I run because I don’t know what else to do with my feelings.

I run so that I can drown those feelings with sweat and let the unspoken words loop endlessly around in my brain until I’m too exhausted to speak them.

There are days when I feel like I’ve come so far in the past 8 years since Oli was born. I’ve come miles and miles from where I was 3 years ago.

But sometimes I just have a moment.

Or a day.

Or a week.

Or a month.

Sometimes it feels just like yesterday when I looked at the tiny baby sleeping in the cradle beside me and wondered if I could ever love her enough. If I would ever be enough for her.

I don’t have a problem looking at her now.

I don’t have an issue feeling for her. For accepting her and pushing her and dreaming for her and advocating for her and being her legs and her eyes and her voice and the interpreter between her and the rest of the world. I don’t mind teaching people about her and answering questions and embracing the differences and cherishing the moments.

I run into to trouble when I try to do all of these things while looking at me.

I run into to trouble when my mind merges with my heart and I’m left feeling less than and inadequately equipped to deal with all that comes with being a special needs mother.

So I run.

I run for her, with her, towards her.

And sometimes I run away from her.

I run away from the pain.

I run away from the fear of the future and the unknown.

I run away from the therapists and the doctors and the never-ending appointments.

I run away from the ARD meetings and IEP’s, missed goals, reports of plateaued progress, regression and missed milestones.

I run away from myself.

When I talk about her, when I talk about us, I still feel the need to justify everything. To throw my FINE’s at the world and scream from the top of my lungs WE ARE FINE! DON’T YOU KNOW HOW FINE WE ARE! NO! THOSE ARE NOT TEARS! I HAVE SOMETHING IN MY EYE!

Why do I do that?

What’s so wrong with being not fine?

I still haven’t figured that part out yet. I don’t know what’s wrong with talking about how I feel.

I still haven’t really figured out how to feel how I feel. If that makes any sense at all.

When Oli was born and the pain and despair simply became too much for me to bare, I turned all of my feelings off. It was so much easier to be numb than it was to face another day literally drowning in my fear.

Now 8 years later I’m trying to turn them back on.

It’s harder than you’d think.

So I run.

I run and I run and I run.

The tears melt into sweat and neither can be distinguished once they drip from my nose.

I’ve pounded miles and miles of trail with my little wet feelings littered behind me.

One day, I hope to be able to talk as much as I run.

Until that day…

I’ll run.

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I Know.

18 Apr

I don’t know why I still feel the need to read through every new doctor report that I get about Oli. Especially when they are brain scans like MRI’s and EEG’s.

I mean, I know what they will say. I know how they will make me feel. I know that by the time that I reach the end of the report, I will feel that familiar heartache, sadness, emptiness, and hopelessness that I always walk away with.

I know that it will take me right back to all of those feelings that I felt, and ran from, in the beginning.

I don’t know why reading certain words about her makes me feel the way that it does.

I know that she is cognitively delayed. This is nothing new. I do know that there has to be changes in her brain that make her unlike other children her age.

I know that there are physiological reasons why she cannot dress herself, go the bathroom by herself, brush her teeth, talk, walk well, control her emotions…

I know all of these things, and yet I was still rocked and shocked when I read the words “static encephalopathy” on her latest EEG report.

Static encephalopathy?

Brain damage?

Huh?

My daughter doesn’t have brain damage. You, madam neurologist, are mistaken.
I googled the term “static encephalopathy”. This new, ugly label that you included in my daughter’s EEG report.
I googled it and I am totally regretting doing so. Although it didn’t really change anything. I already knew what those words meant.

Permanent brain damage.

Just seeing it written, actually written down, having been officially diagnosed, was enough for me.

Why did I have to read about it further on Google?

And why did the doctor not tell me herself that she suspected this?

Did she not know, that I didn’t know, that this is what they labeled her as?

Because I didn’t.

I didn’t know.

I just thought that she was delayed.

Just delayed.

I always think that it is a possibility that she will be able to catch up.

Maybe not completely. Maybe she would always be unique, but aren’t we all?

Did they have to go and write down, WRITE DOWN, that she has permanent brain damage?

Don’t they even care about my feelings?

Shouldn’t this new label have required an actual sit down with the doctor?

Shouldn’t an official diagnosis of “static encephalopathy” require a meeting with my family to explain what this means for my daughter? Why do they have to be such assholes and write down something like that in a report?

The only reason that I was able to read it was because I requested all of her records for this Medicaid waiver program that we’re trying to get her on. I wasn’t mailed a copy or given this piece of paper upon discharge from the hospital.

Now I sit here, with my daughter sitting beside me, tears pooling in my eyes, and whispering “I’m so sorry” once again.

I’m so sorry Oli. I’m sorry that this happened to you. I’m sorry that this is something that makes your life more difficult. I’m sorry that I had to read this ugly label and feel sad for you for a little while. I’m sorry that I had to look into your beautiful face, put my arms around you, kiss your neck, and let you feel my tears as they dripped down onto your shoulder. I’m sorry that I can’t tell you why I am crying.

I will make you the same promise that I have made to you since the day you were born.

I will NOT let this define you.

I will NOT let this hinder you or discourage you or slow you down in any way.

I will NOT let doctors or therapists or teachers read this about you and let them make decisions about your future based on what a piece of paper says.

I will make sure that they KNOW that this is NOT who you are.

I will make sure that they see everything that I see.

I will make sure that the world treats you the same as everyone else and in most cases…better.

Because you are my special little girl. You are capable of achieving any dream that your heart desires.

It doesn’t matter what a piece of paper says.

This…

I KNOW.

When the sun goes down and the rainbows disappear.

18 Jun

It’s almost time for Oli to start summer school. She goes for 4 hours a day, 4 days a week, for 5 weeks. She has gone to summer school every year since she began going to school at 3 years of age. ESY (extended school year) is for special needs kids who have shown regression over the Christmas break. If you regress, you go to summer school.

It’s a win, lose situation for us. It’s great that she gets to go because summer break is so long, I don’t want her losing any of her skills, and she really likes school. It gives her more of a structured day and a schedule, which she does well with. It’s bad because it means that she isn’t doing as well as some of the other kids. I guess it makes me a little sad because she NEEDS it. Although, her teachers have told me every year (the 3rd year now) that they are qualifying her based on the emergence of critical skills. Walking and talking. I’m not sure if these really were emerging at the time of her evaluation though.
When they qualified her for ESY this year she wasn’t talking again yet. She didn’t start that until a few weeks before school got out. They agreed on ESY sometime after Christmas. Her walking skills have improved over the last 3 years since she took her first steps. I wouldn’t classify this as emerging however. She’s stronger now, but her walking isn’t that much different than when she was 4 or 5. I think it’s mostly a balance problem. I’m hoping that one day her balance will get better. It has, little by little, year by year, but it’s a slow process.

All that being said…she gets to participate in summer school. With all the other kids who NEED to be there. Who cannot afford to have a regular summer vacation like all of the other kids. This is the part that is hard to swallow. She isn’t like the rest of the kids. She never will be. This is both wonderfully special and woefully heartbreaking.

I try to be positive and upbeat. I focus on what she can do, how far she has come, and the progress she’s made. I try to focus on all of her abilities and not her disabilities. But I would be a terrible, fake, fraud if I told you that I never get sad or mourn her struggles. If I told you that I never get angry at the injustice and unfairness of her multiple disabilities.

Here’s part of the real, honest truth. I get sad. I get sad a lot. Not every day. Not even every couple of days, but it happens. When she’s having an especially hard day and the meltdowns become epic, and the tears become frequent and she refuses to walk and she doesn’t speak a word, and it feels like the day will last forever, I remember exactly how much she is NOT like other children. I am faced with how different she is. I am reminded of what makes me a different kind of mother. I’m not very fond of those days because I REALLY want to be like you. Most days I try to pretend that I am. Most days I treat Oli like she is just like your child. And then we have those days where I just can’t pretend and I can’t ignore the fact that she’s not.

It’s during those days that it becomes hard to chronicle our story and write about our journey through our unique life. I mostly wrote about the positive and people always love reading about the warm fuzzy encounters we have. The pink cloud moments where everyone is smiling and life is full of rainbows and roses. Everyone knows though, this is not always the reality of our situation.

No ones reality looks like that all of the time. So sometimes I’ll write about the hard times, the sad emotions, the tears, and the fear…in the hopes of portraying an accurate account of her life. Of my life. I’ll write it knowing that people will worry about me, they will worry about her, they will question my strength, they will be afraid to offer words of comfort, they will offer too many, they will feel sorry for us, and they will be glad that they don’t have a special needs child. I will write it knowing that some people will not want to hear about this part, they will refuse to read about the struggles because life is easier when you don’t know about the difficulties of it all. Life is easier when you ignore the pain and only celebrate the happiness. I know. I was like that too. Some days…I still am. People may choose not to read this part, but hopefully… they will come back. Hopefully, people will continue to be inspired and hopeful about my daughter even when I describe my hard days. Even when I talk about my pain and disappointment.

Because this is our life. We live life on life’s terms through the good, the bad, the smiles, and the tears.

And I really wouldn’t want it any other way.

What Do I Know? I’m Only Her Mother.

18 Feb

“Sweater, n.: garment worn by child when its mother is feeling chilly.” ― Ambrose Bierce, The Devil’s Dictionary

After Oli settled down it was time to transfer her to a room on the pediatric floor for an overnight stay. As they wheeled her upstairs I am staring down at my daughter’s beautiful face. My mom calls her a china doll because that’s what her face looks like. Especially when she was a baby and sleeping. Her face was so peaceful. Chubby cheeks, little porcelain nose and a perfectly round head.

The nurse notices me staring at Oli as she settles her into her new room and comments on how beautiful she is.

I know that she is beautiful but I’m a little taken aback by a stranger saying it. I just wasn’t that used to it. She was very beautiful, but because of her eyes most people just didn’t say anything.

“Thank you.” I tell the nurse.

“Let me know if she wakes up and seems like she is in pain. She has some medication ordered for her, but I don’t want to give it unless she absolutely needs it.” the nurse finishes up and leaves the room.

I was thinking “Oh good. This nurse won’t make her wait forever when she is hurting.” I breathed a sigh of relief and settled onto the chair to watch TV.

A little while later Oli wakes up crying. I pushed the nurse call button and tried to comfort her as I waited. The doctor had warned me that she might be a little more uncomfortable because he didn’t put in a G-tube so there was no way for gas to escape. Because the top part of her stomach was now wrapped around the bottom part of her esophagus (a fundoplication) she could no longer throw up, but she also could no longer burp. The doctor told me that if the pain the reflux was causing her was worse than the gas pain then it wouldn’t be too bad for her and she would adjust quickly.

Looking down at her now, I started questioning my decision not to put in a G-tube.

The nurse finally comes back into the room and has to raise her voice above Oli’s wailing. “Yes?”

“Yeah, I think she needs some of that magic juice ordered for her. I think she is in pain.”

“Oh I think she’s okay. She’s probably just hungry.”

I stare at her incredulously. Ummmm, no. I think I know her. First of all I have taken care of this little person while she lived INSIDE my body for 9 months and second of all I have taken care of her OUTSIDE my body for 7 months. That is 16 months 17 days 10 hours and 15 minutes longer than you have taken care of her. Besides, I think by now I know the difference between a cry of pain and one of hunger.

“No. She’s not okay. You need to give her some medicine.”

The nurse gives me a disproving look and then leaves to get the medication.

I couldn’t believe that she was actually going to argue with me!

She came back in the room and gave her the medication. Throughout Oli’s 2 day stay this was an ongoing fight with this nurse. I’m not sure what the problem was?

By the next morning Oli was much better and didn’t seem to be in pain at all. I got to feed her Pedialyte first which she inhaled (as much as I would let her. I had to be careful that she didn’t suck in too much air). Then once she was tolerating her formula we took her home.

The surgery was a success and I was so happy that Oli was feeling better. The doctor was right. The gas pains didn’t seem to bother her at all. The only downside is when she gets the flu she isn’t able to throw up unless the pressure is very great. So instead of feeling crappy and just barfing everywhere and feeling better she dry heaves for hours. It’s no fun for her.

As for the nurses I’m not sure what the problem was. They really should learn to trust parents and understand that they know their children. I didn’t want my baby doped up either but I knew that she was hurting and isn’t that what the medication is for?

Somehow being just a parent is equivalent to being stupid in some doctor and nurses eyes despite your credentials. What do I know? I am just her mother.

Even though I have not eaten, slept, or breathed, unless she has first, from the moment she was born. I can’t possibly know more than someone who has met her. . .once. . .for 15 minutes. . .and can’t remember if she is a boy or a girl. . .

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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.

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.

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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