Tag Archives: special needs moms

The page that I’m on

11 Dec

Some days I look at her and I can’t believe how lucky I am.

Not everyone has an Oli.

Some days I look at her and I can’t believe how lucky she is.

She’s not sick. She’s not in the hospital. She’s not hooked up to any machines. She’s alive.

And some days just the fact that those are my blessings, makes my stomach turn.

It still feels like a rollar coaster ride some days. A lot of days. But not as many as before.

I can look at her now and most of the time not compare her to her friends. To her classmates. To the kids who were supposed to be her classmates.

Every once in a while I’ll get a glimpse of the little girl who I thought she would become.

Sometimes it’s in a photograph. Sometimes it’s in a dream.

Every time it makes me lose my breath.

Like someone just punched me in the stomach and I can’t quite get enough air into my body.

I saw a picture once of Oli portrayed in a book as a ballarina. She was smiling at the camera; looking at the camera. She was beautiful in that picture. Such a perfect little seven year old girl, dressed up in a tutu, posing for a picture. I can’t look at that page in the book. That’s not my Oli and if I start imagining and pretending it is… I will grieve for the loss of that little girl all over again.

I don’t want to lose that little girl all over again.

And some days… I just do.

Some months she will progress so much. She will speak a few words, take a few steps, stop stimming so much… and I will begin to believe that she will make it. That she will become the little girl that grazes my dreams every once in a while.

But then she’ll stop.

She always stops.

And then she’ll go backwards.

And then I lie awake at night and wonder what I did. What did I do? Did I not praise her enough? Did I not do enough at home? Was there some therapy that I should have looked into? What would have made the difference this time? What could I have done to propel her forward? To keep her where she was and not keep falling behind.

I think about that for a few days and then I remember.

This is Oli

This is who she is.

At some point after she was born I stopped agreeing with other parents who told me that she was going to be okay. And by “okay” they meant that she would catch up to her peers.

I think that maybe they believed it.

I probably believed it too.

Or maybe we were all just trying to make me feel better.

Now, no one tells me that she will catch up. No one tells me that she will be okay. At seven years old, no one believes it anymore I guess.

I miss how it was before.

Tonight I sit at my computer trying to figure out how I’m going to schedule ALL of her therapy sessions that she gets now.

Occupational therapy

Physical therapy

Speech therapy

Music therapy

Massage therapy

Aquatic therapy

Hippotherapy

I start to question just what it is that I’m doing?

What am I doing?

Are these helping her? Are they helping us?

What are we doing?

I fight and I fight and I fight.

I research different therapies and teaching techniques. I go to ARD’s at school and fight for more services.

I fight for her home therapy sessions.

Her home PT cut her therapy in half.

And I fought.

And I lost.

I lost that one. She doesn’t get as much home physical therapy as she used to and I’m pissed.

Don’t they KNOW how much she needs it?! Don’t they KNOW that she is almost walking independently? Don’t they KNOW?!

Yes. They probably do know. They probably know what I am reluctant to admit.

That all of these things are just not helping like they used to.

That Oli has come as far as she will come right now.

So what do I do?

Do I give up? Do I cut back?

Do I sit and hold and hug and kiss my daughter more? Do I do all of the things that normal families do with their children if they’re not in hours and hours of therapy sessions?

How is this affecting my other children?

What does Oli’s schedule do to them?

They never complain. At 9 and 4 years old, her brother and sister have not once, ever complained.

If you ask my son if he ever gets jealous of Oli’s attention, he just looks at you like you’re speaking another language.

Trust me, I’ve had this conversation with him.

“What do you mean mom? Oli needs help.”

But as their mother, at some point, I have to stop and consider us as a whole family supporting each other.

Not all of us supporting Oli.

But how can I look at this amazing little girl and not offer up the whole world for her?

How can I look at her and see just how far she really has come and not want to do more?

How can I get access to all of these wonderful therapies and say no?

What if it helps?

What if it works this time?

What if she begins to walk and talk?

What if I stop and she never does? Was it because we didn’t do everything?

I’m not sure, at this point, that I can live with the thought of not doing everything.

So…If you ask me what it feels like to be a special needs parent I will tell you this,

It feels like you are reading an amazing story with excitement and joy and suspense and so much love. You get to the last chapter because you just know that it is going to be the best ending ever….

And the entire last chapter is missing.

It’s just not there.

You have so many questions. Did she speak? Did she walk? Did she go to the prom? Did she have a best friend? Did she ever play with her brother and sister or learn to ski or go fishing or read a book or even learn the alphabet?

You don’t know.

You’ll never, ever know.

Until one day you stumble upon an old, threadbare copy of that same book sitting on the back shelf of some dusty, second hand book store.

You pay $1 for the copy and rush home to read that final chapter, only to realize…

That the ending never really mattered all that much.

It was the journey to the end that is what made the story.

So that’s how we live here.

We live the journey and not the destination.

I live my life one page at a time.

I live my life knowing that the last chapter is missing.

And I try to make the best of the page that I’m on.

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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.

Mother Moments

14 Jun

In the darkest of my fears, I sat alone, watching my little girl sleep. She was three days old. I felt like I had aged 50 years in those three short days. My life as I knew it, was over.

Before me slept an enormous responsibility. Before me slept one of the most vulnerable babies I had ever known. Before me slept my fear, my betrayal, my heartache…my love, my new life…my daughter.

From the moment that I found out that she was blind, I began to have “moments”. Moments are hallmark to all new mothers, but mine became drastically different from theirs. I began to have special needs mother moments.

In order for me to describe to you what those are, I have to tell you about my moments when my first chid was born. When he was born I had lots of those mommy moments where my heart filled with fear and anticipation. My brain would race full speed ahead to the future and I would begin to worry about what would happen to my baby boy.

Will he sit up before he’s 6 months old? Will he crawl by 9 months? Will he walk before he turns 1? Will he be potty trained by the time he’s 3? Will he learn his colors, numbers, and letters before kindergarten? Will he learn to read without difficulty? Will he get good grades, make friends, join the soccer team or play basketball? Will he be a responsible driver at 16? Will he take a girl to the prom? Will he graduate high school with honors? Will he go to college out of state?

All of my worries with my son were not questions of “what if he doesn’t___”. They were questions of will he do this now or later? Will he do this or that? I never feared that he wouldn’t walk or talk, be potty trained, learn the alphabet, read, write, drive, play sports, have girlfriends, graduate or go to college. I knew that he would do all of those things.

I simply worried the biggest worry since the invention of motherhood. My uneasiness festered within the age old question that millions of moms before me have tortured themselves with.

“Was I doing it right?”

After the birth of Oliana my moments of “Was I doing this right?” became overwhelmed by the heavier contemplation and an inward reflection of myself. I began to worry “Can I do this at all?”

In the beginning I had no one to lead me down a previously cultivated path, pointing out all of the obstacles. I had no mother who had been there before me who could assure me that I was doing this thing correctly.

When my son was born I simply picked up the phone and called my mother if I had a question. If she didn’t answer I called a friend. Now when I asked my mom questions about what to do with Oli or what the next step should be, she shrugged her shoulders and responded “I just don’t know.” My friends didn’t know either. If I tried to describe how I felt they all got a look in their eyes of total compassion, but complete incomprehension. They just didn’t understand.

I had been thrown into a tumultuous sea with a flimsy life raft that had a slow leak in it.

No one knew what I was supposed to do. No one could tell me how I was supposed to feel.

I began to ask myself some of those same questions that I asked myself with my son, but with a completely different context. Instead of wondering when she would do things, I began to wonder if she would EVER do them.

Will she learn to read, write, or spell her name? Will she ever be able to tie her shoes? Will she learn to walk down the street by herself? Will she one day be able to say the alphabet, be potty trained, or learn to use a fork and spoon by herself?

I didn’t know.

I started to have moments where I just could not stop myself from reliving what my life had been like before and what it was going to be like in the future. I began to daydream and create alternate realities where I would live the best and worst case scenarios.

The best of the best case scenario was one where upon a trip to an eye specialist, he would look into her non-existent eyes and tell me that there had been some kind of terrible mistake. She wasn’t blind at all.

Best case scenario was that she was only blind and cognitively and developmentally appropriate.

Worst case scenario involved a wheel chair, hospital bed, ventilators, and round the clock nurses. Life would creep slowly by with every minute spent worrying about her health for the rest of my life.

I ended up somewhere in the middle.

These “moments” now take on a whole different perspective as she gets older. Most often it happens when I see another little girl that is her age doing something normal. Something completely average and typical. Running through the park, laughing and playing, tying her shoes, eating an ice cream cone, hugging her mother, saying I love you.

These moments creep up on me and slam that heartache fiercely into my chest and steal the breath from my lips.

Those are the things that my little girl should be doing. I close my eyes and superimpose my girl’s face onto the other child’s body and imagine her living her life without blindness or delays. I imagine her running and playing. I see her looking into my eyes and feel her breath against my cheek as she whispers “I love you mommy.”

But when I open my eyes, those dreams disappear and vanish quietly. Thin, transparent, wisps of smoke that drift effortlessly through my fingers.

This was simply not how it was meant to be. She has a disability. She will ALWAYS have a disability. I cherish who she is and what she can do. I celebrate her numerous victories and feel gratitude towards what we have.

Sometimes…I still get sad. I’m human. I’m a mom.

Those are some of my moments today.

Special kids make parents special.

15 May

Special kids make parents special. Special needs kids are not brought to special parents.

This…is my truth.

Before I start I must state that these are MY beliefs and mine only. I know that everyone has their own opinions of these types of things and I do not mean to be disrespectful or offend anyone. This is simply something that I think and that I felt like writing about today.

I do not believe that I have some kind of special characteristic or that I was CHOSEN to be the parent of a special needs child. I like the idea of that, but I don’t really believe it. To truly believe that, places me on some kind of high pedestal above everyone else. To say that, would be saying that I possess some kind of super human mother strength that has allowed me to endure, maintain, and overcome something that other mothers could not have done.

This isn’t true.

Many people say to me “I just don’t know how you do it? It must be so incredibly hard. I could never do what you do.” My response is “Yes you could. Yes you would. If this had happened to a child of yours, you would do what I have done and what I do. You would have no other choice.”

I didn’t have a choice.

I was a good mother before I had Oli. Logic would indicate that I would be a pretty good mother regardless of what type of child that I had. I don’t think that I do anything extraordinary. I think that through the progression of dealing with what I have, I have been incredibly slow to learn to live with it.

When I write the story part of my blog I write it as it was back then. Not as it is right now. When I talk about the loneliness, the sadness, the self-pity, self-hatred, blame, regret, remorse…that’s how I felt back then, not how I feel right now. I have learned to accept, embrace, and move on from believing that this is something that happened TO ME.

This did not happen to me. This happened to Oli.

Ever since Oli was born I have acted in a way that I did not feel inside. I have always ACTED like it was all fine and that I was okay with her disabilities and her struggles. Because I never wanted her to feel like she was any different. I never wanted her to see that I felt sorry for her. I never wanted her to feel my tears stream down my face or feel my body shake as I shuddered with grief.

I acted how I didn’t feel inside because I wanted to feel what everyone else did. I wanted to feel peaceful with it. I wanted to get to that elusive acceptance part that other parents would talk to me about.

Where was it? How do you get there? I use to cry and beg my husband “Tell me what to do! Tell me how you feel how you feel!”

It was only not too long ago that I finally started believing it all for myself. I’m not saying that I feel okay with her struggles. I will never be okay watching my baby girl’s difficulties. What I am okay with now, is who she is as a person.
I am okay with what makes her Oli.

If you have a child like her or have fought with your own demons, you know what a tremendous accomplishment this is. This was huge for me. This took away all of the guilt that I felt since the day she was born. This also took away the pressure of believing that I had to live up to that super human mother strength. This took away the pressure of trying to do this thing perfectly.

When people would say things like “God gave her to you for a reason” I thought that it meant that I had to be perfect. Because if God had given her to me for a reason, then I must do something amazing with this gift. I must be the perfect mother because I was CHOSEN.

I had to stop believing all that because it was just too much pressure. It was too much. I would beat myself up if I made mistakes and punish myself for feeling the way that I did. I would chastise myself because if GOD had handpicked me for this incredible task…then I was failing miserably. God wouldn’t want me to feel sorry for myself. God wouldn’t want me to feel sorry for her. God must be sorry that he chose me. Those thoughts began to consume me and I sunk lower and lower. Those words of my being blessed by a gift from God did nothing, but make me feel worse.

I do believe in God. I do believe that there is plan and a power greater than me that is running the show, but I don’t necessarily believe that I was specifically chosen. I believe that this just happened.

This might sound contradictory. It probably does. It’s hard to explain in words.

I guess just the fact that God, the big cheese, picked little old imperfect me specifically for this huge responsibility freaks me out a little bit. Okay. It freaks me out a lot. Those are impossibly huge, scary shoes to fill. Those are measurements that I just can’t possibly live up to.

I make mistakes. I mess up. I’m not perfect. I never will be. This is a learning process and unfortunately part of life is messing up. It’s making mistakes, but learning from them.

If you have spoken the words “God gave her to you for a reason” to me please know that I really appreciate it. Know that I don’t get upset or cringe anymore. I know that when people say those things it’s because they really believe them and it comes from a good place. I know that they are words of encouragement. I really don’t mind. I just wanted to talk about why I don’t say it to other people and why I hated being told that in the beginning.

The only thing that makes me special today is being the luckiest mom in the world to 3 beautiful children. One of them just happens to be special needs.

My life as mom.

12 May

When my son Kekoa was born in 2005, I became a mother for the first time. When my daughter Oli was born in 2007, I became a completely different kind of mother. I became a special needs mother. When my last daughter Ginger was born in 2010, I became a different mother again. Each child has changed me, made me grow, and taught me new things. Each child has made me the mother that I am today, but not the mother that I will be tomorrow. As each year passes, as each child gets a little older, as I in turn get a little older (boo), I learn. I learn and become a little more comfortable with this messy, unpredictable, smelly, funny, weird, magical thing we call motherhood.

When my son was first born, I was a wreck. Seriously. I panicked over everything. I was terrified that someone was going to breathe on him the wrong way and give him the plague. I was scared that someone would hold him the wrong way and his neck would snap off or they would drop him on his head. I was afraid that formula would make him less smart or that the wrong baby food would give him some kind of weird disease or give him explosive diarrhea.

When he was 2 months old I seriously thought that he might have some kind of syndrome. I studied him too long one night and my lack of sleep and new mother brain absolutely convinced me that something was wrong with his face. Didn’t his nose look a little too flat on top? Weren’t his eyes set too close together? Was his head supposed to be that big? My husband laughed at me and certified me exhausted. I was sent to bed and he looked normal to me again in the morning.

I worried that he slept too much or didn’t sleep enough. I worried about his clothes. I wanted him to have the most adorable new clothes and I worried that while I worked, my husband would dress him in mismatching outfits and wrong colored socks. I worried about him sleeping on his back. I worried about him sleeping on his tummy. Could I cover him up at night or would he smother to death? Was this the right kind of bottle or would it give him gas? Was this swing certifiably safe or would it be recalled in a month? Was I doing it right? Was I doing it wrong? And his manual was…where? Where was his manual? I would think, “This kid should’ve come with directions.” Then I would remember that I’m not so good with directions and then I would worry about THAT! I worried about everything. I was ridiculous. I was NEW!

And then I had Oli. Oh my god. THEN I had Oli!

I still worried about everything, but those worries changed. I worried about all of those other things and more! I worried that she wouldn’t live to see her first birthday and that I wouldn’t get to watch her grow up. I worried that she wouldn’t grow or eat well enough to thrive. I worried that blindness would handicap her in such a way that she would never enjoy her life fully. I worried that she would never walk or talk. I worried that she would never have any friends. I worried that she would never have a boyfriend, go to the prom, or get married. I worried that she would never get to know the joys of raising her own children. I worried that if she did have children, they would be affected by the same eye condition and also be blind. I worried that blindness would not be her only disability. I worried that there would be more.

And then I had Ginger. For the love of all the crying in the world…and then I had Ginger. She cried so much and I was so stressed out about having three children ages 4 and under that the only things I ever worried about with her was whether or not she had been fed and if her diaper was clean. I didn’t have time to worry about anything else. I didn’t have the energy either. She rarely got new clothes and often times, she wore the same clothes that she had slept in the night before. If she wasn’t crying, we were good. She cried all the time. Sooooo…we were not good very often. I still didn’t really worry much with Ginger. Maybe I had worried myself out?

Many of the worries that I had with Kekoa and Oli were valid as a new mother and as a new special needs mother. Many of them were classified as ABSURD, but many of them still stalk my brain at night. It seems that when the darkness falls, some of those old fears silently creep back into my mind. They try to keep me awake, pretending that I can predict the future and the outcome of what life holds for us. Then I wake up in the morning. When I wake up I remember again that life is a journey and an adventure and I don’t always need to know the destination. I only need to be present for the ride.

Motherhood is about changing, adapting, and growing. Old dreams may be lost, but new dreams are acquired. Old thoughts and ideas are discarded and new ones are developed and perfected. Things we worried about before are acknowledged as silly. Other things we worried about before still linger.

The point is…every mother worries. Regardless if you have a child with special needs or not. It’s a requirement for getting your motherhood license. You must worry about the most insane, ridiculous, irrelevant, nonsense matters. And you must worry about the reality and the responsibility of raising good people. We are all just trying to raise good little people and make sure that they grow up into respectable, responsible, productive members of society.

All of us just want to love our children and sometimes we just want to survive the day.

Because some days…mother’s just need to survive the day.

IN MY DREAMS, SHE FALLS OFF THE CLIFF

29 Apr

Have you ever had a dream that you wake from completely devastated, but so happy that you’ve awoken from your worst nightmare? A dream that sits way too close to reality for comfort?

I’ve had a few of them, but three of those dreams stand out profoundly. These are three that I will probably never forget. All of them involve my Oli.

The first one was the recurring dream that I told you about in the very first blog that I wrote for my story. The dream that I was going blind. You can read it HERE. I’ve never had that dream again since Oli was born.

The second dream/nightmare happened after Oli had her first big seizure and we almost lost her. I must have had some kind of post-traumatic stress. I dreamed that she died that afternoon.

A van pulled up to my childhood home with my daughter’s body lying inside it. I met the driver of the van at the end of the driveway. I already knew that she was gone. The driver dipped his head in the sun, casting a dark shadow across his sorrow filled eyes. Then he walked around to the back and opened the hatch. When he turned around again he had a little bundle wrapped in a brown blanket in his arms. I couldn’t see any part of her. Except for her feet. They were lying across his forearm. I couldn’t tear my eyes away from her feet. She was holding them in a certain sweet way, so delicate and petite, crossed at the ankles. He handed her to me and I carried her wrapped in the blanket over to the shade of a tree and laid her quiet body beneath it. And then I just sat there. I sat there staring at her beautiful little feet. My heart broke into a million little pieces. How could she be gone?

I woke up from that dream gasping for breath, feeling the happiness and life being squeezed right out of me. I ran to the other room and sat on Oli’s bed. I sat there and stared at her chest, rising and falling with life. I rubbed her feet beneath the blankets until they wiggled and pulled away from my hand. I sat with her until that image of her lifeless form left my mind. But, it hasn’t left it completely. I still see those little feet lying motionless in the grass. I still vividly remember that dream.

It terrifies me.

The third dream I had last night.

I had a dream that I wasn’t her mother. I was her nanny and I was moving. I was moving very very far away from her and I wasn’t going to be able to see her again. It was so strange because in my dream I was looking at Oli through someone else’s eyes. Not my own. I saw her as other people must see her. She wasn’t my child, but I felt fiercely protective of her and completely torn apart at the thought of not watching her grow up.

She was sitting in a chair as I was saying good bye. Her curly hair was blowing in a breeze coming in through an open window. Her lips quivered in sadness. Her little eyes were filled with tears. She knew I was leaving.

I said, “Oh Oli. How am I ever going to live without you? I don’t want to go away. I want to stay with you forever. How am I going to survive?”

She wrapped her arms around my neck and nuzzled her face into the crook of my collarbone. Just like always. And then we said good bye. I cried and sobbed and screamed her name.

“Oli! Oli! No! Please! I can’t leave her! Don’t make me leave her!” The anguish washed a red tide over my heart and wiped all happiness away.

And then I woke up.

I woke up and my Oli was still sleeping safely in her bed. I hadn’t been taken from her. I was still her mother.

I don’t know what these dreams mean? I don’t know if other moms have these types of nightmares? Are other special needs moms terrified of losing their children? Do we all notice a visible line between life and death and are distinctly aware of keeping our children walking on this side? Do we all hover and protect, trying to keep them from falling off the edge only to have them flail beyond our control off of the cliff in our dreams?
I’ve never had dreams like these that involved my other children. They’ve never died or been taken away from me.

With Oli… I have. I still do.

I’m probably just terrified of losing her. Sometimes her life seems so fragile compared to everyone else’s. She seems so much more breakable. I imagine a lifetime of loving her and laughing with her, but I know that there is no guarantee. There is no guarantee with anyone, but with her it just seems so much more real.

Sometimes I just can’t seem to help being petrified that I’m going to lose her. I don’t want to lose her.

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