I know I’m okay as long as I don’t make pancakes for dinner.

21 Oct

“Close the door Michael. I can still hear them.”

Michael obediently pauses Zelda and walks over to the lightweight door, closing it on the sounds of my parent’s argument.

“Now turn up the sound on the TV and just ignore them.”

Michael again complies without protest, spinning the volume control on the old 32” TV. He picks up the remote control of the Nintendo and scrunches up his little face in concentration.

He is probably about 7 years old.

I am probably about 10.

This is not the first time we have performed this ritual.

It will not be the last time either.

About an hour later my mother knocks softly on our bedroom door.

I get up, reluctantly pausing Link mid stride across his never ending quest through the green maze, and open the door.

Michael looks at me worriedly.

I look up and into my mother’s red rimmed, glassy eyes.

I see the tears still pooling in the corners of them just about ready to spill over. Just about, but not quite.

My mother will rein them in, sparing me from having to wipe them from her cheeks.

My mom will pretend to be strong for me.

Even though I know she’s not.

Even though I know that she has once again been defeated.

“Are you okay?” I ask although I already know what her response will be.

“Yes. I’m fine.” She answers in a voice that is too high, too cheery, to be anything but fake.

It is only now that I notice that she is carrying two plates in her hands. She lifts them up towards my face.

“I’ve made pancakes for dinner!” She says this like someone would announce that they are going to Disneyland.

She says it like she’s just given me exceptional news.

I’VE MADE PANCAKES FOR DINNER!!

“Thanks mom.” I respond quietly. I try to pretend that this is good news. Pancakes. I love pancakes and so does my brother Michael.

I know what those pancakes mean though.

My eyes cast around her to the doorway and towards the silence that sits awkwardly beyond it.

My mother is confused at first by my sad expression. Then she meets my gaze with eyes pooling with tears once again.

She knows that I know.

She knows that even though I am only 10 years old, I now understand that pancakes for dinner is never a good thing.

Pancakes for dinner means that my mother is not okay.

I’ve kept that memory since childhood. I still associate pancakes and dinner as a very bad thing. I’ve had my own children now. Three of them. And guess what?

I’ve made them pancakes for dinner a few times.

Very few times, but I have and I cringe at that memory too.

I told the young child me that I would never do it.

I would never turn those light, fluffy, syrupy plates of deliciousness into a dripping plate of sorrow…but I have.

I have fought against instinct and upbringing and tried to swim against the tide that tries to push me in the direction of my mother’s life.

To no avail.

Points in my life have begun to mirror my mother’s despite my every attempt to fight it.

Of course it doesn’t all look the same. But a lot of it does.

More than I’d probably like to admit.

And so when my life falls apart and the tears stream down my face and my sobs threaten to choke me… I do what feels right. What feels comfortable.

I make pancakes for dinner.

That’s how I’ve come to measure my sadness and my coping skills.

Am I making pancakes for dinner?

If I am?

It’s bad.

Special needs parenting or nauseating roller coaster ride?

11 Oct

I wanted to write something for the people who may have babies and are just beginning to fall, head first, into this world of special needs parenting.

If you are like me, you are most definitely feeling the bounds of gravity as you plunge down screaming towards an end, a ground that seems impossibly far away. You’re racing towards a bottom that you cannot see, you cannot feel, and you believe you may never reach the end.

Let me assure you that you will.

Oh yes.

That end, that bottom, that ground is there.

BAM!! CRASH!! BANG!!

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Or maybe you’ll land a bit more softly.

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Or maybe you’ll even receive a warning prior to landing.

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(Where was this sign when I was approaching?)

There will be a moment, a second, an hour, a day, a week, a month… I cannot say how it will happen for you…where everything will begin to smooth out. It will begin to even out. You will start to once again feel comfortable in your own skin again.

Or you will smack your face on a rock buried in the mud at the bottom.

This was me.

For me it happened in an instant.

A head jarring, face slamming, body crunching SMACK onto the bottom.

I cruised along downward in misery, in self-pity, in blame, regret, remorse, grief, sorrow…for years before a light bulb went off in my head like a giant flashing beacon begging me to notice it. It had been there all along. Drawing me down. Steadily building momentum and pummeling towards the forefront of my brain waiting for the right moment to come out and slam me into that pit.

Hello?!! Here is your awakening! Here is the answer that you’ve been waiting for!

THIS, MY FRIEND, IS THE END.

STOP FEELING SORRY FOR YOURSELF! STOP FEELING SORRY FOR HER!
SHE IS WHO SHE IS.
NO MORE.
NO LESS.
JUST BELIEVE IN HER.

And that was it. That was all I needed to “get over” the sadness. I was able to move on at that point.

All of the self hatred, self pity, sadness…it all just went away.

It seems pretty simple.

Looking back at it, it seems like someone along the way should have just told me that. They should have been able to say “just get over it”. “Just accept her.”

In truth… they did.
Lots of people did.

But hearing the words with my ears and believing them in my heart are two totally different concepts. I heard lots of people telling me how to go about moving on from this thing that had happened to me.

I heard lots of people tell me how they had dealt with something similar. How they had moved on from it.
I listened and listened. I prayed. I pleaded. I just did not feel it.

Until I did.

Until I understood with all of my heart that this was really not something that had happened to ME.
Until I threw away all of my expectations and just expected her to be the very best that she could be.

Which may not make sense to you at all, but it makes perfect sense to me.

How can I not have expectations for my child?

This is how.

I expect nothing at all of her and I also expect everything.
I expect that she will do everything, nothing at all like anybody else in the world.
I expect that she will do nothing but everything that she can do.
I expect that she will do and be who she is and I love her for that.

It’s just a different perspective. A different way of viewing life and the world in general.

Before she was born I had all of these dreams, all of these visions, of how we would be, how we would exist in the world as mother and daughter.

After she was born I mourned the loss of THOSE dreams.

I didn’t realize that I could come up with NEW dreams.

I didn’t know that I was able to re-create this new life however I wanted to.

I didn’t know what a blessing and a gift Oli truly was to me.

Once I began to realize all of these things my whole life began to change.

I wouldn’t want it any other way now.

So.

If you’re just beginning this terribly bumpy, painful, twisting, and nauseating roller coaster ride of special needs parenting I want you to know, it gets better.

I promise you. It gets better.

You may have to be patient. You may have to hang on, white knuckling your life for a little while before it does. But it gets easier.

People used to tell me “time heals all” and I thought they were full of B.S.
I never thought that it would get easier for me.

You know what?

I was wrong.

It did get better and it continues to get better all the time.

I just have to leave those expectations and pre-conceived notions of how I THINK it should be, at the door.
I just have to live my life loving my Oli however she is.

Or…

Maybe it will be totally and completely different for you.
Maybe you’ll be given a diagnosis and be fine with it from the start.
I’m not trying to speak for the whole world here. I’m just trying to give someone else hope that if they’re feeling like I felt in the beginning, it will get better.
Besides…what do I know?
Some days I’m still trying to figure this whole thing out.

Eme’s Army: Fight for Sight

30 Sep

Oli was recently given an amazing opportunity to work with another special needs child on a campaign by a company called Paper Clouds Apparel.

Paper Clouds sells t-shirts, hats, sweatshirts, hoodies, and totes featuring the artwork of special needs children. Oli has her handprint heart on two different t-shirts and a tote that is now available for purchase. She is featured alongside another child named Logan and together they have some incredible things to choose from.

Paper Clouds Apparel employs special needs adults AND they donate 50% of the proceeds to a charity that we choose. We chose http://www.emesarmy.org. Emerie is a little girl who needs our help to get her eye sight back. Please visit http://www.papercloudsapparel.com and check it out!!

“The Cause (Sep 30 – Oct 13):

Eme’s Army
Eme is 6 years old and she is being robbed of her sight by CRB1-LCA, a very rare genetic disease. Eme’s Army, made up of supporters and volunteers like you, raise awareness of childhood blindness and fight for those like Eme. CRB1-LCA has no treatment. A gene therapy clinical trial is being conducted for RPE65-LCA right now that is working and is giving blind kids like Eme their sight back. By replacing the mutated/broken gene with a good copy of the gene, blind kids can see again. It is a fight against time. If too many of their retinal cells die, the cure in clinical trials will not work. So please join Eme’s Army and help them FIGHT for SIGHT! All money raised by Eme’s Army funds research through the Curing Retinal Blindness Foundation (CRBF). An all volunteer organization, CRBF was co-founded by Emerie & her family to stop CRB1-LCA.” -Quote from http://www.papercloudsapparel.com

I can’t even begin to describe what this means for Emerie and her family. Imagine having a child go blind and then find out that there may be a way to treat it…it’s beyond incredible.

I would do ANYTHING if there was a way for Oli to see.

Anything.

I may not be able to help Oli get her vision back, but I can help Emerie in a small way.

What an opportunity. What a privilege it is.

It’s a privilege not only to work with Eme’s Army, but also to work with a company like Paper Clouds Apparel.

What they are doing for the special needs community is remarkable. They are making a difference in the world. They are making it better and more accepting and more “normal” for kiddos like Oli.

That’s something that I am extremely proud to be a part of.

If you can, please visit their website or their facebook page.

Share this campaign with your friends. Let them know that they can help too! I never ask you guys to share anything, but this is important. The more money we raise the better chance Eme has of seeing her family again.
You don’t have to share it from here. Share it from Paper Clouds Apparel. It doesn’t matter how, just tell people about it.

Thank you!

Here are a few of the shirts to choose from:

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emes6 (1)

emes7

emes8

emes10

emes9

Autism is just one color on the rainbow

27 Sep

I am doing an autism walk with and for Oli tomorrow. Because of that, I have been thinking a lot about what autism looks like and what it means in my family.

Oli was diagnosed with autism 3 years ago.

She was diagnosed by a team of specialists who specifically look at the differences between autism and blindness because they can appear on the outside to have shockingly similar behaviors.

Flapping in a typically developing sighted child is not part of normal (and I use that word loosely of course) development.

Flapping in a typically developing NON sighted child IS part of development.

A child speaking with echolalic patterns is not normal in a typically developing, sighted child.

Echolalia can be normal for a blind child.

Speaking, followed by a sudden lapse into being completely non verbal over a period of a few months, that is not caused by anything neurological…is NOT NORMAL in any child blind or sighted.

Yet this is exactly what my child did.

This is what led me to seek further answers by a team of specialists in Philadelphia.

This, along with other things, is what led to Oli’s diagnosis of autism.

So…there I was…3 years ago…raising a child with no vision, no language, and no way of communicating with me…

I was devastated.

This is the thing that kept running through my head,

“She can’t see. She can’t speak.”

Can you imagine, as a mother, what that feels like?

I had to face the reality that #1 Oli was never going to meet my gaze. She was never going to look into my eyes or look at me at all. I was never going to be able to look into her eyes and see an unspoken emotion that might lie hidden there. I was never going to be able to discern ANYTHING from her eyes.

And #2 Oli may never speak. I might never hear “I love you” roll off of her tongue.

(Granted, I might never hear the words “I hate you” either, spoken from the angst filled heart of a teenager, but that’s a different blog topic.)

Trying to explain this sadness to my family and friends was and still is difficult for me.

Most of them, when I do try and talk about it, respond with “Yeah but what if’s…” or “Yeah but it could be worse…”

They are right.

But it doesn’t make me feel any better.

I would rather hear “That must be hard” or “I’m sorry” or nothing at all.

I have found that the majority of the times that I do speak about the sadness, I do it NOT looking for answers to this problem. I am not looking for a solution to fix my heart. I am looking for an ear just to listen. I am only looking to get it off of my chest and express my sadness in words rather than bottle it all up inside and never speak about it. Which is what I did when she was born. I would rather tell you about it and leave it out there on the floor for those 5 minutes than carry it around with me for the next few days or weeks.

I know that Oli’s blindness is never going to be fixed or cured and it will never even improve. It just won’t. That’s life. That’s reality.

It took me longer to accept the fact that her autism will never be fixed or cured and it may never improve either.

But the truth is that it does not matter what label she has or what diagnosis she is given.

It doesn’t matter if those horrible evaluation histories label her as “Globally developmentally delayed” or “Autistic”.

It doesn’t matter because she still receives every possible service that would be available to her through either diagnosis.

And it doesn’t matter to me because that label says nothing about who she IS as a person. It may make her act a bit different on the outside. It may make language more difficult, but it will never define who she is as a person.

Just like the blindness will not define her.

It just won’t.

It took me a long time to figure that out too.

So today autism means less to me than it probably does to other people.

Autism for Oli is just one more color on the vibrant rainbow that makes her who she is on the outside.

But it can’t even come close to touching the spectacular kaleidoscope that she is on the inside.

When Facebook Sucks

25 Sep

Well…WTF? Really? ANOTHER person that wants to bash on facebook? Why? Is there a point to this? Is it to hurt my feelings? Is it because they just don’t think about what they’re writing before they hit “post”? Maybe they speak a foreign language and what they typed in their language was super sappy and nice and then facebook messed it up and translated hate. No. That’s probably a little far fetched.

Why?

When I started this Oli page back in December of last year I never thought anyone would really be on it. I invited my facebook friends, told my mom about it, and that’s it. The only reason I started the thing was so that I wouldn’t annoy my friends by publishing my blog every day.

(Gasp.)

Everyday?

Yes. Everyday.

Back then I used to publish a blog post every single day. Back when I was writing Oli’s story. But then I got caught up in the whole facebook page craze. People that I didn’t even know started liking the page and reading the blog. I became more and more afraid of the people that I didn’t know that were reading my words, seeing my pictures….judging my girl.

At least that was my fear.

You know what?

People WEREN’T judging my girl.

People were LOVING her!

So I gained some confidence. I grew bolder. I started posting more, sharing more. I even posted a picture of Oli without her prosthetic eyes in.

Holy crap that scared the daylights out of me!!

But no one told me that it was gross. No one told me that she looked scary or ugly.

You know what people told me?

They told me the truth about Oli. They told me what I already knew.

They told me that she was beautiful no matter what.

They told me that no matter how her eyes looked, she was gorgeous.

They told me that no matter how much she struggled, how much progress she made, how much she didn’t make…that she was perfect.

People just reinforced everything that I had already believed about her.

As time went on and more people found the page, I would feel that fear again in my heart. That fear that stems from the day that Oliana was first born. The day that the doctor looked at me with ice in his heart and blackness in his eyes and announced that my daughter was NEVER going to look like everyone else. When he met my tear filled eyes will a flat dead look in his own and the words “She was born without eyes” rolled off his lips, that fear took hold deep in my chest and has never fully receded.

I’ve learned to deal with the fear. I’ve learned what my own truth is and how to handle situations with other people who may not find Oli as perfect as I do.

But every once in awhile, when I am sitting high up in myself, a single hurtful comment about her sweeps me into one of my lowest, darkest valley’s. It sweeps me to the deepest part where that fear thrives.

Facebook is a strange thing. It’s both wonderful because there are so many people and stories that leave me feeling full of hope, inspiration, and admiration, and it is hateful, hurtful, and awful. Because there are lots of both types of people in the world.

In my everyday life it’s easy to surround myself with love and support. Even going out in public has become less of a traumatic event. When Oli was a baby I used to hide her in her car seat to avoid the stares and the hurtful comments about her eyes.

I’m sensitive. What can I say?

A 6 year old? Not so easy to hide in a car seat.

And I don’t WANT to hide her anymore. Oli has taught me that beauty really does like INSIDE of us and not on the outside. I’ve learned to avoid the stares. I’ve somehow learned to decipher curiosity from the judgments. I KNOW she’s beautiful and that’s all that matters.

On facebook? I can’t just avert my eyes. I can’t unread a comment. I wish I could. I wish that “ban” button came with an “unread and erase from memory” button.

But it doesn’t.

So I get upset.

I get upset, not even with the people who choose to make fun of or hate on ME. I’m an adult. Not everyone is going to like me or agree with me. That part I’m okay with. It stings, but I quickly get over it.

It’s when people start saying hateful things about my daughter that I can’t just get over it.

But here’s the thing… Here’s the truth…

There are SO many people that LOVE Oli. That have nothing but positive, hope filled, lovely, AMAZING things to say about her.

Over 2600 people that do nothing but become inspired by her.

I let 1 person get to me. 1 person who had something negative to say about her.

I let that 1 person take away all of the good in one single instant.

I let all of my hard work become undone in a moment of time.

That’s sad.

That’s pitiful.

That makes me even more angry!

No.

I posted on facebook that I was going to take a break from the page for a bit to get my head back on straight. I do need to do that. I need to remember why I started this blog and the page.

I started it not to win everyone over. Not to become popular. Not for compliments or anything else.

I started it for Oli.

I started it so that I could share her story and maybe reach one other person going through the same thing.

I started it so that someone else out there may not feel so alone.

I started it to give other people hope. To let other people know that anything is possible if you just don’t give up. If you believe in yourself and believe in your children.

I started it so that I could show people that you don’t have to use your child’s diagnosis as any excuse NOT to do something. Use it as an inspiration to do EVERYTHING.

Thank you for reminding me of that with all of your comments tonight.

Thank you for reminding me to get my head out of my ass, and to stop feeling sorry for myself.

Thank you for reminding me that I shouldn’t let one person stop me from doing what I wanted to do with this thing.

Tonight really through me for a loop for two reasons.

One because that comment just totally caught me off guard and two because all of the support that you guys have given not just Oli, but me too.

I couldn’t believe it when I picked up my phone and saw over 100 people had commented on my status.

And every single one of them was telling me not to give up.

So I won’t.

I never have before and I sure don’t want to start now.

I never ever want it to be an option for Oli to give up just because something is difficult. I don’t ever want to set that example, so I won’t do it here. I won’t do it anywhere. I have to lead by example and one way to do that is to just keep moving forward.

Here, we put one foot in front of the other and just keep moving forward.

Some days that’s all you can do right?!

Thank you.

They said that she may never walk.

2 Sep

When Oli was born on a hot, spring night in May of 2007, I was a different person. I lived in a world where my life made sense. My life had order and structure and play dates and date nights. My life was free of specialists, prosthetic eyes, Braille, vision teachers, early intervention programs, and support groups. I had never witnessed a person look at me with pity in their eyes or felt the weight of a disability trying to drown me with its sorrow.

I was naïve.
I was over confident and cocky.
I thought I was indestructible.

I thought that I was immune to the bad and the sad things that can happen in life. Those things just didn’t happen to me. Those things happened to other people.
They happened to people that I heard talked about in whispers. They happened to people that I gossiped about on break in the cafeteria at the hospital where I worked.

“Did you hear about that mom?”
“Yeah. They said that she was a nurse. Her baby was born with a disability.”
“Yeah. I know! I couldn’t believe it!”
“I can’t believe it happened to her! She’s so nice. What is she going to do now? I don’t know what I would do if I gave birth to a special needs child.”

Suddenly I WAS that mom. Suddenly I HAD that baby.
Suddenly my life no longer had structure or play dates or date nights.
Suddenly my life was FULL of specialists, prosthetic eyes, Braille, vision teachers, early intervention programs, and support groups.

In 12 short hours my life had been turned upside down. I was drowning in sorrow and self pity and anger. I struggled with the fact that my baby had not been born in a way that I had expected. My baby had fallen somewhere well beyond my comfort level.

What was I supposed to do with a blind baby?

As the months and then the years wore on, I let my daughter live outside of what I was comfortable with. As each new diagnosis came, each one seeming to be worse than the last, I grew more and more uncomfortable with the challenges that came with raising such a special little girl. I was not confident in my abilities to parent her.

I didn’t know what I was doing! I didn’t know if I was doing this right or this wrong or this just mediocre or this just horrible!

They told me that she may never walk or talk. She may never do this or do that…

So I stayed right where I was. Sad… Angry… Alone…

I stayed there until it became so uncomfortable and so miserable that I had to change the way that I looked at our situation. I had to just accept that this is what had happened.

Instead of looking at it as unfair and unjust, I started looking at it as an opportunity. I began looking at it with serving a reason and a purpose. I stopped feeling sorry for both of us and began realizing that just because she had different abilities than many other children, they were only disabilities if I disabled her myself. Which is exactly what I had been doing by feeling sorry for her and thinking that she couldn’t do something because she was blind and couldn’t walk, or talk, and was autistic, and had seizures.

I stopped using her diagnoses as an excuse for her NOT to do something.

I started thinking about ways to make it possible for her to do everything my other kids did.

I began letting Oli do what any other child did. I just had to do it with her.

When my other two children wanted to go in the bouncy house at the park, I went in the bouncy house with her and helped her jump.

When my other two children wanted to go on the kiddie roller coaster at the fair, I went on the kiddie roller coaster with her.

When my older son wanted to go bike riding, my husband and I bought her a bike trailer that she can pedal on her own.

It’s just what we did.

So when someone suggested that Oli do a triathlon, I jumped at the opportunity.

Why not right?!

She loves to be outside and she loves the pool. I knew that she would love being out there competing with other kids and doing the things that other kids do.

I could not NOT let her do this just because of her inability to see, or swim on her own, or bike on her own, or run. We just modified her race.

I did it WITH her.

It was the most incredible experience. I kicked with her on a board for the swim, pulled her in her bike trailer for the bike and pushed her in a jogging stroller for the run.

Close to the end of the race I pulled Oli out of her bright yellow jogging stroller and whispered to her quietly “Oli? Are you ready to cross that finish line? Let’s go! All of your friends are cheering for you! You walk across that finish line!”

Oli got out of the stroller and held my hands, walking the last part of the race.

My daughter…who some said may never learn to walk…WALKED ACROSS THE FINISH LINE OF HER TRIATHLON!!

She may not have been able to tell me how it felt to hear her name over the loud speaker, to hear all of the kids and the parents cheering her on, but the smile on her face said it all.

No words were needed to describe just how she felt at that moment.

My girl was proud of herself.
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She finally called me mom.

23 Jul

Yesterday was the first day that Oli ever called me mom.
Today when she said it again someone else was here to validate for me that she actually said it. My husband heard her.

She is 6.

She called me mom.

Not mom-mom or ma-ma-ma. Not ommm or mmmmm or ahhhh or any of the other things that she has called me in the past.

Just mom.

I knew she could. I hoped she would.

I just didn’t know when?

As we were sitting on the chair this morning after breakfast she quieted her head shaking, tipped her head towards mine and said “Mom”. Then she smiled and leaned forward to give me a hug and pat me on the back. She hugged me tightly like “I know mommy. I know you’ve been waiting to hear that from me for a very long time. There you go. I said it.”

I was so shocked that I don’t even think I registered the fact that it was SUCH a big deal until after she left for school. Until after I came back upstairs and sat down with my coffee.

And then it hit me.

I finally heard the word that I have been waiting to hear since she was born. The word that I have dreamt of all of my children saying since the moment that I knew that I wanted to become a mother.

After 6 long years…I finally heard it from Oli.

If she has taught me anything it’s patience. If she has shown me anything it’s that we have to celebrate the tiniest accomplishments because for a child like her, the smallest things become the most memorable.

I remember each of her little moments like it happened yesterday. The pictures of those things are etched in my brain like a tiny portrait of the perfect day. I remember where we were sitting, what we were saying, who was in the room, and the big smile on her face once she realizes what she has done.

I’ll give you an example…

The second time she put two words together (the first time was at 2 years old before she stopped speaking) happened a few months ago. Kekoa, Ginger and I were playing a Lego board game. Kekoa was working on building a car out of red Legos with grey doors and black rubber wheels. Ginger was sitting to my left pulling out all of the tiny grey pieces, trying to annoy her brother. Oli was sitting with my mom eating applesauce. My mom asked her if she was all done eating. Oli tipped her head to the side and quietly said with the confidence of a super star “All done.”

Cue the big smile that graced her perfect lips and the huge yells of celebration and congratulations from the rest of us.

The itty bitty moments, in a regular house, on a regular day, mark the events of my lifetime.

THESE are the moments that I will remember when I grow older and reflect on the good times in my life.

I won’t remember when I bought my first car, when I moved into my first house, or what I wore on my first date.

I WILL remember when my Oli girl said mom for the first time.

I will remember when all of my kids did, but she works so much harder for these milestones. Months and months turn into years and years of therapy to achieve the things that other children seem to do so without effort.

And yet…that is almost exactly what she did today.

Somehow, working on it for all of these years instantly turned into a distant memory.

She said it so clearly, smoothly, and confidently that it just rolled off of her tongue like it had always been there.

Like she had been saying it all along.

I have many people joke with me and say things like “Just wait! Wait until she starts talking all of the time and then you’ll wish for the days that she didn’t.”

I laugh and say “Yeah” like I have some comprehension of what they’re talking about.

I don’t.

I can’t imagine a day that I wouldn’t want her to speak. She could speak to me all day, every day for the rest of her life and I honestly don’t think that I would ever get tired of hearing her sweet voice.

Can you imagine the day that she could have a conversation with me? Can you imagine a time when she could tell me what she wanted for dinner?

I can.

It gives me butterflies.

Nope.

I will never ever wish for these days when she can’t.

But, I know that she will be able to someday because she surprises me all of the time with her accomplishments.

It may have taken her 6 years to call me mom, but she said it!

She said it.

That’s all that matters.

What if she never speaks?

20 Jul

As I stood in the hallway, talking and listening to this Italian mother speak about her 14 year old, blind, autistic daughter Eliza, one thought kept racing relentlessly through my mind. I had one question that I needed to ask this mom about the daughter that looked, and acted so much like my own. I wanted a tiny glimpse into the future of this Italian world that seemed to mirror my own.

“Does your daughter speak now?” I asked her quietly, trying to hide the desperation from my voice.

“No. No she doesn’t.” She replied, quite clearly seeing the pain seep into my eyes.

In that moment, in those brief few seconds that passed between us, the reality of what we both were feeling, the dreams that we had for our girls, were spoken without any words from our lips. They were spoken between the souls of one heartbroken mother to another.

She knew that when she reveled that truth and her reality to me, that she was giving me an answer that I didn’t want to hear.

I didn’t want to hear it.

Do you know what I wanted to hear? Of course you do.

I wanted to hear that her daughter had learned to talk. I wanted to hear that after years of silence, 14 years of silence…that she could now talk about what was going through her mind.

I desperately wanted to hear that one day my daughter would learn how to talk to me.

But that wasn’t what had happened.

As she began telling me the story of her daughter’s communication struggles, I began to feel more and more uncomfortable. I began to feel more and more angry. I began to see more and more similarities between our children.

And I didn’t like what I heard.

Her daughter had also learned to talk when she was 2. She had also stopped when she was 3. She had started speaking again right about the age that Oli is now…

And then she stopped.

She just simply quit speaking.

One day it was there, and the next day it just wasn’t.

Poof.

BOOM!

There it was.

One of my biggest fears had once again been dropped at my feet.

When Oli began speaking again a few months ago I couldn’t believe it. After 3 long years of complete silence I couldn’t believe my ears when she started to say a few words again. With every new word she spoke the fear of what she wouldn’t say the next day crept in the back of my mind. The questions of “What if she doesn’t talk today?” came with each morning sunrise. The fear of “Will today be the last day that I hear her speak?” came with each nightfall.

And here stood this mother telling me that all of my fears that I so successfully banished to the back of mind, might one day come true.

What now? What do I do with this information?

After a few days of living within that fear and those terrible alternate realities that my mind likes to create; the ones where everything goes wrong and I am helpless again struggling against a monster that I could never hope to defeat, I realized that I was projecting a future upon Oli that I have no control over. I was sentencing her to a life of silence without any knowledge or proof that this is what would happen. I was letting myself believe once again in a hopeless situation that has absolutely no reason to be hopeless.

Oli is not Eliza. Oli is Oli.

What she will or won’t do has nothing to do with what another child has or has not done. Even though that other child is so similar to her. She still is an individual. One capable of fulfilling any potential, achieving any goal and overcoming any obstacle that lies before her.

Oli is Oli.

I have said it before, she will do what she will do regardless of how much time I spend worrying about it. Regardless of how much time I spend crying over it.

So I took my own advice.

I spoke the words to myself that I have spoken to other parents about their children.

As her mother, one of my most important jobs is to never stop believing in her.

And then there were two…

18 Jul

Last weekend I had the privilege of attending the ICAN conference in Chicago, IL. ICAN stands for the International Children’s Anophthalmia/Microphthalmia Network. Every two years, children and families from all over the world, travel to learn about and meet other people with anophthalmia and microphthalmia.

It’s always great to learn about the new technology available for blind people. It’s always fantastic to learn about new advancements in the treatment of these conditions.

But nothing beats what it feels like to look at another child or another family that knows exactly what your life is like.

No one knows what it’s like to raise a blind baby, to deal with the trials and tribulations of conformer therapy, to deal with other people who stare at your child…

Than other parents with a child just like yours.

No one knows about the breakdowns in the car because someone said something hurtful about your beautiful daughter…

Except another family who has walked in your shoes.

No one knows what it’s like to hide your newborn baby underneath a pile of blankets in her car seat because you just can’t stand to have one more person comment on how your very wiggly, giggly, very AWAKE baby, is sleeping because she can’t open her eyes…

Than the other mom who has had it happen to her.

The families that I met this weekend? Know EXACTLY what I’m talking about.

It’s so refreshing to talk about all of these things and to look into another mom’s eyes and see that flash of recognition. That spark of “Yes! Yes! That’s happened to me! That’s how I feel!” I don’t have to explain everything. Half the time, I didn’t even have to finish my story. I would get half way through and then see her head start to bob up and down and a knowing smile, play on her lips. Ahhhh…yes. You get it.

There was still some explaining to be done though. There were still a lot of walking, talking, interactive blind children running around the halls that weekend.

There were many many children who were NOT like my Oli.

To be honest…it makes me feel a little bit weird and strange to be around them. I feel kind of awkward. I don’t know what to say to a talking blind kid. Give me a non-verbal, blind kiddo with multiple disabilities and I feel right at home. Otherwise, I’m out in deep water. Do I offer my hand to them? How do I introduce myself? What do I say?

I’m just not used to it. I don’t know that life. I only know my own.

It was still pretty cool though. I was sitting at dinner and was watching a new friend talk to her son at the table. She was telling him where his knife and fork were. That there was a little lip on the edge of the plate. And then she took his hand and guided it over the plate to show him. I could only stare and smile and think to myself, “Yes. I must be doing it right. I do all of those things with Oli even though she can’t tell me if that’s correct or not. It must be, otherwise this other little boy would tell his mom that it wasn’t.” I need to see those kinds of things. I need to know that I’m doing it right with Oli.

There was one little girl that I just can’t get out of my head. A 14 year old girl from Italy. She was just like my Oli. After seeing her, I don’t think I’ll doubt Oli’s autism diagnosis again.

Little Eliza from Italy was JUST like Oli and she also has the diagnosis of autism. She too, is totally blind and non verbal.

Her and her parents sat next to us at dinner on Saturday. I had spoken to her parents a little during the day. The geneticist wanted me to talk to them about some different forms of communication techniques and tactile symbols, to use with her.

I knew that when they described her, I had that look on my face. I know that as I listened to her mother speak about her, I had that spark in my eyes. “Yes. Yes! I know exactly what you’re talking about.”

Meeting Eliza, was a whole different experience. I have never met another child that was like Oli. I mean like her in EVERY SINGLE WAY!

I couldn’t take my eyes off of her during dinner. Her mannerisms, behaviors, the way she moved her hands, the way she ate her food, the way she relied on her mom…it was ALL like Oli.

It may have been a little strange for her parents. More than once they caught me with my mouth hanging open, looking like an a-hole, staring, smiling, and nodding in their daughter’s direction. More than once I had to excuse myself and say, “Oh my gosh!! She’s just so much like my daughter!! I’ve never seen that before! I’m sorry for staring.”

More than once I felt like bursting into tears because I was just so happy that I had found another mom who knew what it was like.

There are, of course, other children born blind and who have the autism diagnosis. I’ve met some of them.

They were not like Oli.

I later asked the genetic counselor at the convention what made Eliza and Oli so similar. They have the same eye condition, but different gene deletions. Oli is missing the OTX2 gene, while Eliza is missing the SOX2 gene.

She couldn’t really give me a definite answer, other than to say that there had to be some genetic correlation that caused the blindness and the autism. Somewhere in those genes lies the answer, or rather, the missing answer to the puzzle. Something about those missing genes that caused their eyes not to develop and then whatever caused the autism, is the same in Oli and Eliza.

It was fascinating.

The next day when it was time to leave, I said good bye to Eliza at breakfast. She took my hand in hers and ran her fingers over and over my palm. She found my ring and was twisting it around. She smiled and smiled… Her mom said, “Wow! She really likes you!” I told her “I know. It’s because I just totally understand her. It’s because we have this bond that ties us together. It’s because of Oli.”

And that is the story of the day that I finally met another child like Oli.

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.

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