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.

My heart is a flood of tears.

6 Feb

“Have you ever considered that he might be on the autism spectrum?”

The air left my lungs.

My heart dropped to the floor.

My world stood still, and silent, and dark.


The psychiatrist sitting in front of me looks at me with her clear, blue eyes.

Her pixie face is soft and caring.

She asks the question with compassion in her voice.

This was the polar opposite of the encounter that I had when Oli’s diagnosis was dropped into my lap.











I hadn’t even thought of it until right at that moment.

That brief moment.

It was 10 seconds of my life that might potentially change the course of my days from here on out.

My life is made up of these little moments.

I hadn’t considered it at all.

Until now.

Until I started looking at him with a different set of eyes.

Now I am seeing him.

The obsessions.

The social awkwardness.

The demeanor.

The sound sensitivity.


“What do you think?” There’s that quiet concerned tone again.

In my opinion, all major medical diagnosis suggestions should come from psychiatrists.

Should come from this psychiatrist.

She’s fantastic!

There’s no judgment.

There’s no doom and gloom.

There’s only presence.

“I don’t know. Do you think?”

My mind is half in the room with her and halfway through his future, playing out every possible reality.

Predicting what a diagnosis of autism would mean for him.

“We may be looking at more than depression and anxiety here.”

She says it bluntly.

She says it without complete conviction.

She is throwing out another possibility to explore.

She isn’t diagnosing. She is suggesting that I further investigate.

If I want to.

Kekoa was diagnosed with a major depressive episode and anxiety a few months ago.

After he had changed schools.

After he began being bullied at school.

After his dad had moved out of the house and to another city.

After we got divorced.

After the world as he knew it, fell apart and began to feel empty, and dark, and cold, and painful.

After he lost all of his joy and happiness.

After he began to loose hope. Hope in himself. Hope in the future, and the present. Hope in the people around him.

I watched my happy, energetic, 9 year old boy loose himself in a tumultuous sea of sadness, where he was beginning to sink because he could no longer swim.

“I may not cry on the outside, but my heart is a flood of tears.”  These were the words spoken by my son tonight at his therapy session.



And now possibly autism.

As I rode home, with my baby boy sitting next to me in the car, I began to process the information that I had just been given.

And I began to feel the exact meaning of the words just spoken by Kekoa.

I knew exactly how he felt because I too may not cry on the outside, but my heart was a flood of tears.

I was so sad.

I was so angry.

I began to question and feel everything that I felt when Oli was born.

Why? Why my child?

And in an instant I remembered the answer.

Because it’s the same answer that I found with Oli.

Why not my child?

We are not special here.

We are not invisible, indestructible, or impenetrable.

This is life.

There are no contracts, agreements, or guarantees. We get what we get and must accept what is.

Not what should be, or might be, or could be.

What is.

I know what to do with this.

I know that any diagnosis will never quantify, explain, or define my child.

He is who he is and I love who he is.

I will allow myself a few moment of sadness. A few moments of anger.

And then I will move on.

I will move on to tomorrow and do exactly what I am meant to do.

Which is to help my son.

My heart may be a flood of tears tonight, but I see the sunshine in tomorrow.

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


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.

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?


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.



I never said it would be easy

29 Mar

I was honored to be able to present at the 2014 TAER conference again this year. This is the second time that I was able to speak.

Can you believe it?! Twice! What?! Are they crazy?! Did they hear my speech the first time? Do they remember the boxes of tissues that we passed around the room last time? Apparently I forgot about that part too because even I didn’t come prepared.

I’m a crier. I know. How can I still cry at a story that I’ve lived, written, and spoken about frequently?
Some things will never cease to be just a memory. I will relive the story of Oli’s birth and her early years every single time that I speak about it, for the rest of my life.

Yes. It has gotten easier. The pain is a little bit less with the passage of time. It’s easier now because I know that her story, my story, has a happy ending.

I know that I am able to relive those early moments, the ones that are burned in my brain, live them, feel them, talk about them, write about them, cry over them, and then go home and pick up my girl and realize how far we’ve come.

Writing about it and talking about it has actually become my therapy. My outlet for grieving and healing.

This will surprise the people who have read most of my story or seen me speak, but I used to never talk about how I felt about any of this. Never.

Fine was absolutely my favorite word and I was FINE! Don’t you know how fine I am?

I was fine, she was fine, we were FINE, people!! I would say this as my life was literally falling apart around me.
I would say it as the tears stained my pillowcase at night…
I would say it as my heart felt like it was shattering into a million pieces every time a new diagnosis washed over my brain and flooded the banks of my emotions…

I was fine.

I would say it to everyone.

Anytime a friend or family member would meet my gaze with worry in their eyes and a soft hand on my shoulder and ask “How are you?” I would respond with an outer persona that was not me. I would speak the word “fine” and my soul would scream out at me to reveal the truth.

I. Was. Not. Fine.

But I didn’t know how to tell anyone anything else. I didn’t know how to tell people that I was struggling because I thought that it would mean that I wasn’t a good mom.

I thought that because my life and my emotions didn’t follow the people’s stories that I’d read about online, you know, the ones that are like mine now, I thought that it meant that I was a terrible, awful mom.

Let’s be honest here.

My blog and my facebook page now? Would have made me feel like total crap back then.

I would read stories like mine with a disgusted feeling in my stomach because I didn’t feel any of the things that I feel now. The old me would have been so jealous and so envious and so….blah…about the new me. I was so caught up in my negativity and my own feelings of self pity that it would have killed me to read about a mom who just accepted her life after the birth of a special needs child.

Come on. I mean I was no where near acceptance. We weren’t in the same zip code. We weren’t even on the same continent.

I did NOT accept that I had a child with a disability.

I did NOT accept that my life had taken a turn that I wasn’t expecting.

I did NOT accept that I couldn’t fix it, change it, run from it, hide from it, bury it… live with it.

I didn’t accept that this was something that I was going to have to learn to live with.

I did not want to have to accept the fact that I had to accept the fact that I had given birth to a daughter with a disability. A blind child. A child with multiple impairments.

No. That was totally unacceptable.

So I would read about moms who shared their beautiful journeys to acceptance, except I never saw their journey. I only saw their destination and that destination was acceptance. I didn’t understand that they all had a story to tell about getting there.

I wanted someone to show me the precise steps that they took to just be okay with it all.

To be more than okay with it all.

To be happy.

What did they do?! Why won’t they just show me?! Can’t they just come over to my house, take my hand and walk me through it?! Why not? Why were they doing this to me? Didn’t they know that I was dying here?!!!

Of course they did, but now I know that no one takes a specific path. There is no right way to do this deal.

They couldn’t just walk me through it. I had to find my own way. I had to create my own path.

And as much as I felt like I was doing it all wrong back then, now I know that there is no wrong way either.

I wish that I had known that while reading the stories of acceptance and hope that other parents put out there, that they were actually planting little seeds in my brain. They were planting the seeds that would eventually grow into flowers along my path and allow me to find my way home.

I think that this is the other reason that compels me to share my story today. My heart physically hurts every time that I see another mom struggling. I see them and I feel their pain just like it was my own.

I wish that I had the magic to bottle up the way that I feel today. I wish that I could just give it to those moms.

But this is part of the beauty. It really is a beautiful journey even when it’s horrible and ugly and painful and sad.

One day, all of us are able to stand at the doors of our destination, look back on our journey, and then look another struggling mother in the eyes and say “I never said it was going to be easy; I only said it would be worth it.” (Quote by Mae West)

What’s wrong with her?

8 Mar

I posted on Facebook earlier tonight that we met a very nice young lady while eating dinner at Chili’s. She wanted to come over and say hi to Oli. While it was very nice of her to come up and ask questions about Oli (I’d much rather have someone ask rather than gawk) she did say something that I just can’t easily forget.

The more that I’ve thought about it tonight, the more it’s eating away at me. And while I don’t talk about things very easily, I write about them very easily so here we go…

The first words out of her mouth after “Hi. Can I ask you a question?” were “What’s wrong with her?”

Oh my god. Would you like me to serve you my heart on a plate lady? Since you know. You just ripped it out of my chest and all.

What’s wrong with her?!!

Nothing! Nothing is wrong with her! Everything is right with her!

What is wrong with your son? Why was he screaming at the top of his lungs the entire meal?

No. No. Rest assured. I did not say any of those things.


Because I’m nice. Because I don’t like to hurt people’s feelings. Because often times I let myself be hurt rather than risk hurting someone else.

I know. Who does that?

I also didn’t say any of those things because this woman really did have honest, pure intentions. She didn’t mean to hurt my feelings. Or my husband’s feelings. Or my children’s feelings.

Or more importantly…

Oli’s feelings.

She said that she had a cousin who was autistic and thought that Oli probably was too. She was a very sweet, nice woman and even though she asked that awful question, I’m still glad that she said hi. I’m still glad that she wanted to say hi to Oli and touch her.

I’m really not trying to throw this woman under the bus here. Even though it seems like she’s sitting under the tires as we speak.

I’m just trying to make a point about the words she used.

Even though words can’t be seen, they can be felt the most. They can cut the deepest and leave scars on the heart.

This was not the first time, nor will it be the last time, that I hear painful words.

Given the choice between someone staring at her or asking what’s wrong with her… I’m not sure which is worse. Or which is better.

For Oli, the stares are better because she can’t see it anyway so it doesn’t matter.

Hearing someone ask what’s wrong with you has to be devastating. Especially since it’s not like she can turn to me and say “Well mommy. What IS wrong with me?” She can’t express to anyone how those words make her feel.

And then there’s my other children.

I can’t even begin to tell you what it is like to have to sit across the table from your sister and hear someone ask what’s wrong with her, like you’re not even sitting there. Like you don’t have to deal with this kind of stuff every single day.

Are the stares better for my other children? I can’t answer that. I have no idea.

I like it when people approach me. I like to talk about Oli. I’m not sure what the right phrasing would be in circumstances like this.

Perhaps just saying hi. Saying something like “Hi. Did you have a nice dinner? I just wanted to introduce myself and tell you that I have an autistic cousin. His name is ____.”

That way I then have the opportunity to say “Hi! You know my daughter here has autism too. She’s also blind.”

Or maybe I should just start being more proactive and if someone comes up and says “Hi. Can I ask you a question?” I’ll just interject with SHE’S BLIND AND HAS AUTISM. SHE ALSO HAS A GENE DELETION AND IS NON VERBAL, HAS SEIZURES, IS DEVELOPMENTALLY DELAYED, HAD SURGERY WHEN SHE WAS 7 MONTHS OLD BECAUSE OF SEVERE REFLUX. SHE’S HAD A FEW OTHER SURGERIES TOO. HERE LET ME START AT THE BEGINING. PULL UP A CHAIR. SHE WAS BORN WITH MICROPHTHALMIA! Excuse me a second, WAITER! WAITER! Hi. Can you give me piece of paper and a pen? I need this lady to take notes. I fear I’m losing her here.”

Ok well. You see where I can go. Ya know. Issues and all. I tend to talk too much and give too much information so that might not be the best solution. (I wouldn’t ever say any of those things in front of Oli of course, but you get the point. Had to put that in there for the serious Sally’s who might feel the need to comment about it.)

I think the first option is probably the best. People may or may not even have a relatable topic to approach me with. You can always just say “Hi. What is your daughter’s name?” Then inevitably I WILL tell you about her.

Come on guys.

I’m like a leaky faucet when it comes to talking about Oli. You know this about me.

I’m an over-sharer. Can’t help it. It’s in my genes. I come from a long line of over-sharers.

I just don’t want Oli or Kekoa or Ginger or Thalia or myself to have to hear the words what’s wrong with her again. Especially not from someone who has a kind heart and good intentions because then I just feel REALLY bad.

If it came out of some jerks mouth, well then… that’s easy.

I just want people to think about the things that they say, when they don’t stop to think about who might be listening.

There could be little brothers and sisters listening.

The child that you’re talking about could be listening.

Even a child who you might think can’t understand you? Can probably understand you.

My Oli can understand you.

Until I meet a doctor that can tell me with 100% certainty that Oli absolutely, positively CANNOT understand any kind of language…

I will always believe that she can. Even though she cannot speak.

Because that’s my job. That is MY job as her mom. I am supposed to advocate for her and protect her and ensure that she knows that she is entitled to the exact same rights as every other human being on this planet.

She deserves not to have people speak about her like she isn’t even there.

We don’t do that to people.

My daughter is people.

And there is NOTHING wrong with her.

Just a mom

6 Mar

I’m about to close another chapter in my life and open a new one.

I…am going back to work.

In another life, I was a nurse. I’ve said that for a long time whenever anyone asked me what I do for a living.
“I was a nurse in another life. Now I stay at home with my children.” I would reply with a great deal of sadness. A great deal of remorse and a certain feeling of loss. I always felt like I had lost part of my identity once I stopped going to work. Once I stopped putting on those scrubs and walking through that lobby of the hospital to take the elevator up to the 5th floor of the Pediatric ICU unit…I simply stopped being a nurse. Now I was just a mom.

I never wanted to be just a mom.

“What do you do?”
“I’m just a mom.”

Four and a half years later, I now realize what I was leaving out with that word “just”. How much I was devaluing myself by saying that. I have never been “just” anything, least of all just a mom.

That word leaves out alllllll of these other things that I have been for them.

I was a teacher and a referee. A cheerleader and a coach. A therapist, a doctor, a nurse, a counselor, a confidant, a friend, an enemy, a prosecutor, defender, judge, jury, warden, jailer, and probation officer..
I was all of those things in addition to being their mom.

Now I’m not going to be just a mom anymore.

As this part of my life is ending…I’m sad. I kind of grew to like just being a mom.

But I’m so incredibly happy.

I LOVED being a nurse. I miss it.

But I LOVE being a mom too.

I look back on these last 4 years with an overwhelming sense of gratitude. Look at what I’ve been able to do and see in these years! Look at how much I’ve grown and changed as the direct result of the 3 little people under my direct supervision. Look at how much they’ve taught me.

I was extremely sad when I walked out of those hospital doors for the last time in August of 2009. I felt like part of me had died and I did not want to stay at home.

Now I can’t even begin to register how I ever felt that way.

I was there for all of the amazing things that happened.

And all of the devastating things too.

I was there when Oli took her first steps. I was there when she learned to stand by herself. I was there when she said “mom” for the first time. I was there for her when she went to school for the first time.
I was there when she stopped talking. I was there when she had her first seizure, and then her second and third and…. I was there for the ambulance rides and the hospital stays. The doctor appointments, the evaluations, the new therapy sessions.

I have been there for Ginger since the day she was born. I haven’t missed a moment, a milestone, a bedtime kiss…

I was there when Kekoa went to school for the first time, when he fell off of his bike and had to get stitches. I’ve been there when he came home crying because the kids at school just don’t understand what it’s like to have Oli at home.
I’ve been there for it all.

Going back to work may mean missing out on a few of those moments.

I know that with change comes growth. I know that I am in a spot in my life where it is time for me to change, but I’m scared. I’m scared of not being there anymore.

Even though I know that I will be and I know that my kids are going to be in good hands because their dad is going to be here.

Even though my brain knows all of these things….my heart isn’t quite there yet.

I never realized until this moment how much I had grown to love staying at home with my kids. I never knew how much I would treasure the car rider lane and waiting for the bus. Preparing after school snacks and breaking up fights.

Okay. I can live without that last one.

I guess I needed this opportunity to really appreciate the amazing gift that I was given when I walked out of the hospital on that hot August day in 2009.

Whenever I meet a woman and I ask her what she does, I can honestly say that I will NEVER hear the words “just a mom” again without looking into the woman’s eyes and seeing all of the things that she is leaving out.

NO ONE is just a mom.


Heart and Sole 5K

2 Mar

March 1, 2014

The Heart and Sole 5K was run in the memory of Alexandria Danielle Romeo. 09-3-1990 – 11-23-2011. All proceeds from this race were donated to epilepsy research. Rest in peace Danielle. You can learn more about her life and events held in her name to fund further research for the treatment of epilepsy here




Before the race began Danielle’s mom welcomed and thanked the participating racers and walkers who all came out to support finding a treatment for epilepsy. Her daughter Danielle, died from a seizure in 2011.

Right before we started, Danielle’s best friend released doves to guide and protect us through the race course.

The doves flying over our heads as we started.

The doves flying over our heads as we started.

It was a very touching and moving tribute.

The race was held in Lakeway,TX which is a very beautiful, but VERY hilly part of town. As we drove in, up and down, up and down, over the many, many hills we knew that there may not be much running during this race.

It was way steeper than this picture portrays.

It was way steeper than this picture portrays.


Kekoa decided that he was going to run and walk the entire race. He did not want to ride in the stroller at all.

He decided that at the beginning. And then quickly changed his mind once we began.


Running is hard. It’s not easy when you start. At all. It takes persistent practice and a positive attitude that you CAN do it. That you WILL do it and that it will get easier as you progress.

As soon as we started Kekoa started to give up and I reminded him of this.

We’ve told him that we will go at his pace. We will go as fast or as slow as he wants and that when he needs to walk we will walk with him.

I wasn’t the one who decided that he was going to run with us from now on.

He decided that.

The last two races that we did he wanted to run and then he quickly began to defeat himself shortly afterwards.

I repeated our promise to help him through and go at his pace.

He didn’t want to listen to me as the tears began to fill his eyes and he began his mantra of “I can’t”.


“You CAN Kekoa. You can. I know you can. It’s hard and it hurts and it takes a while to get into shape. It was and is STILL hard for me sometimes. All I ask is that you try. That’s it. I just don’t want you to give up because your mind is telling you that you can’t. You cannot just give up in life when things get hard. You keep going and you get through it. Just keep going.” We’re walking side by side and I can see that he really doesn’t want to give up. He just doesn’t have the self-confidence to know that he can get through it.

I know this feeling all too well.

I know what it feels like to feel like you can’t make it. Like the weight is too great and the pain is too much and it would just be soooooo much easier to give up.

I know this… because this is what I felt when Oli was born.

I know what it feels like to honestly believe that you will never make it through.

I know that running and giving birth to a child with disabilities is different.

But the lesson is the same.

I can use my experience about life and a positive attitude and pushing through the tough times to teach my son to do the same.

Even if to him, it’s only finishing a tough 5K, it’s still an opportunity to teach him how to live.

It’s a lesson that cannot be learned in one race.


But it is a lesson that I will repeat as long as he is willing to try.


And he did.

He felt defeated and tired. It was hard and frustrating.

And at the end, not only did he finish, but he finished helping his dad to push the heavy stroller up a hill.


By the time we finished it was an hour later and Oli was DONE and Ginger was DONE and Kekoa was DONE and Seth and I were ELATED that we were almost to the finish line.

It was not the best race that we have ever done together, but it was one of the most valuable.

I learned to be more patient with my son and to give him the positive encouragement that he needs.

Kekoa learned that he can complete an entire 5K ALL BY HIMSELF.

Soon after we walked over the finish line, the tears and frustration were forgotten and he was proud of himself.

He really was proud that he had done something that many 8 years old had not done.

He was proud because he finished and he DID NOT GIVE UP.

He was proud because, as much as he wanted to, he did not sit his butt in that stroller. He just didn’t.

I was proud of him.

As the day wore on and I thought back over our race, the prouder I became of my son.

This race was run for Oli, but it was all about Kekoa.



And he’s excited to do it again.

A blind little girl and her deaf dog.

27 Feb

He picked us, we did not pick him.

I’ve heard people say that about their pets before. I’ve always thought it was kind of hookey.

Until it happened to me.

I was sitting on a chair in my living room, watching Oli’s physical therapist Cat work with her, when our lives were changed unexpectedly by fate.

Cat and I were making small conversation about random things, as Oli practiced balancing on one foot.

She suddenly looked up at me and said “Hey! I forgot to tell you something! We got a new dog! Well, not really. We’re fostering a dog. His name is Ziggy and he’s deaf and missing one eye.”

“Really? What happened to him?” I asked, not really thinking anything about it, but interested in hearing what happened to this poor dog.

“They don’t really know. The woman who rescued him got him from a shelter in Dallas. He was scheduled to be put to sleep the next day. I guess he was in a different shelter as a puppy, a no kill shelter, where he had his eye removed because it was punctured. He was adopted out of that shelter only to be surrendered to a kill shelter later. Lynn rescued him from there and then I got him as a foster. Do you want to see a picture?” She asked, pulling out her phone.

“Sure.” I replied, still interested, but really NOT interested. I didn’t want a dog. I didn’t need a dog. WE didn’t need a dog. I was very firm in my rule that we were NOT going to get a dog until AFTER we rented a house with a yard. Right now we lived in a small apartment.

I started repeating this rule of mine as I looked at his picture.


Oh no. I started to get that feeling where I know something, but I don’t really want to know something.

I got the feeling that this dog was supposed to come to us.

“Oh he’s cute!”

Of course I didn’t tell her all of that other stuff. I didn’t need her thinking I was a weirdo.

“So does he have any potential adopters?” I asked nonchalantly.

“He’s had a couple of home visits. Nothing for sure yet. Lynn has to make the final decision on where he goes.”

“Oh yeah. The family that he goes to has to have a yard I’m sure right? Since he’s deaf, he needs a yard to be able to run around in without a leash. Right?” I ask slyly.

“I’m sure. She’s going to be very picky about who he goes to. Especially since he was surrendered. He needs the perfect forever home. I’m sure she’ll want the family to have a yard. Why?”
I see she’s starting to get suspicious.

“No reason. Well. He’s really cute and you know…kind of blind. A little bit. And deaf. I bet we’d be a really good family. But we don’t need a dog. We CAN’T have a dog yet. So…yeah. Nevermind.”

“Well I can ask Lynn about the yard if you want.” She volunteers.

“Okay. If you want. No big deal. I was just curious.” I try to blow it off and hide my disappointment, knowing full well that no rescuer is going to give this dog to a family who lives in an apartment.

And that was the end of our conversation.

For 2 weeks I never mentioned him and neither did she. I honestly thought that he had probably been adopted right away and maintained my “No dog stance” and my firm belief that if something is meant to be it will be.

If he was supposed to come to us? He would.

A few weeks later I got a text from Cat that read “Hey! Can I bring Ziggy over to meet the kids? I think he would like that.”

I responded “Of course. They would love that.”



As soon as he walked up the stairs I was already in love with him. He was so calm and so gentle. He just walked around the living room and then laid down on the floor like that was exactly where he belonged.

Once she arrived I asked her “Soooooo…did Ziggy find a home yet?”

“No! He didn’t! And I forgot to ask Lynn about you guys! Let me text her right now.”

She sent the text, telling Lynn about my family and Oli.

Once Oli arrived home I KNEW without a doubt that this dog had chosen my family. That he had chosen my daughter.

I knew that it WAS meant to be and that I wasn’t crazy.
Well, at least not about this.


I knew that he was meant to be Oli’s dog and he was meant to help her in any way that he could.

I knew that I wanted him to be trained as her service dog.




Ziggy went home with Cat that afternoon and Lynn called me later that night.

“Well he’s actually promised to go to another family, but I just don’t think that they’re the right family for him. He didn’t wag his tail the entire home visit! I just don’t have a good feeling about it. As soon as Cat told me about your family and about Oli, I just knew that this is what he is supposed to do. He’s meant to help a child. When I had him we walked by a school playground one day and he just stopped and started staring at the children. He was so content just watching them. Once I heard that you wanted to train him as a service dog I knew that you were his family.”

Tears filled my eyes as I heard the exact words that had been playing in my head ever since I saw his picture.



Ziggy, Cat, and Lynn came over for a home visit the next day and he’s been with us ever since.

Ziggy became Shaka.





How did this all happen?

How did I look at a picture and KNOW without a doubt, that this was my dog?

How did he bond so quickly with Oli? How did she bond so quickly with him?

It was like they had known each other in a past life and had been searching for one another ever since.

It sounds crazy, but it’s true!

He had gone from wandering the streets of Dallas with a punctured eye, deaf, without a home, to being rescued by one shelter, adopted, surrendered to another shelter, be scheduled to die, rescued, driven to Austin, and ended up being fostered by one of my very good friends.

Why did she just happen to ask me if she could bring him over on that particular day?

If she’d asked just one day later he would have gone to the other family.

If any of these things had happened just a few days later… we would not have him.

This was the very first night that he spent with us. It's as if they are saying to each other  "Yay! You made it home!"

This was the very first night that he spent with us.
It’s as if they are saying to each other
“Yay! I found you!”

OLI would not have him.


It was as if fate had interjected along all of our paths to ensure that this dog came home.


He has never belonged anywhere else.


I know that Oli and Shaka were meant to be in each others lives.

I know that, without a shadow of a doubt, she was meant to love him and he was meant to love and help her.


I wonder if they share a unique bond because she can’t see him and he can’t hear her.

I wonder if they communicate on a level that I will never understand.

When’s she’s sick, like she is today, he never leaves her side.

I have watched them both for over 4 hours now and he has not budged.






He has been her constant, loving friend since he first met her.

He has not left her.





Something tells me…that he never will.



My Special Needs Mother Hat

25 Feb

I talk a lot about my journey to obtain my special needs mother hat. I don’t know why I use this term. I guess it just gives me a good descriptive picture in my head and explains a major role I play.

To me, this hat looks different than a mother hat. My mother hat fit well the first time I put it on. It was easy to wear, simple, elegant, and light. It was beautiful from the beginning and did not tear easily. When it did, I could take it off at night and stitch up any holes it acquired during the day. My stitching was never loose, came apart or was crooked. It always came back together nicely. It rarely fell off and never seemed heavy. I was proud to wear it and frequently showed it off. I enjoyed this new hat tremendously and was very reluctant to turn it in for my special needs mother hat.

When I got this hat it was WAY too big. It fell off all of the time. Sometimes it just blew right off my head. In the beginning I would forget that I had it and a big gust of wind would come along and POOF! Gone. I would have to go chasing it down the street. Sometimes I threw it to the floor in a moment of rage, frustration, or grief. And sometimes I just tried to leave it on the counter at home. I tried to pretend that I didn’t have it. It was extremely heavy. It had all kinds of straps, buckles, and ties attached to it that I couldn’t figure out. It had random flowers on it with names that I couldn’t pronounce. It was uncomfortable and became worn out looking. Rips and tears began to decorate the sides and no matter how hard I tried to stitch it up, my stitching never fixed the holes. They were loose, crooked and simply came apart by an unexpected tug in the wrong way. The whole hat would just fall apart. I would carry my hat in pieces back home and painstakingly try to put it all back together. At first it seemed destined to be big, ugly, uncomfortable, and prone to making me feel like an outsider. It seemed nobody had a hat that looked like mine.

After I wore it for a while, I began to notice other mothers whose hats looked like mine. They were worn and tattered, but had been repaired with beautiful hand crafted stitching and appeared loved and cherished. These mothers looked at me in my hat and smiled a knowing smile and pointed to their heads. “See. I’m proud of my hat. It may appear complicated and worn out to you, but to me it’s beautiful. Your hat will be beautiful too one day.”

Slowly I began to notice new things about this hat that I hated at first. I was learning to pronounce the names of the flowers on it and figuring out the buckles and straps. It wasn’t so big anymore and no longer blew unexpectedly off my head. It began to fit better as each day I grew a little more confident in my role. Every once in a while I still throw it to the floor, but now my reasons are different. It still gets ripped and torn, but I am learning to sew it back up and now my stitches hold it together. It doesn’t fall apart so easily and my stitches are straighter and stronger. I’ve learned to love each and every rip, tear, crease, and stain on my hat because each one has a story. A moment in time and a memory of where I have been and what I have gone through. It isn’t so uncomfortable now and it doesn’t make me feel like an outsider. Now it makes me feel like part of a group. A group of mothers with special hats and special roles that we love and feel honored to have. I no longer try to hide my hat. I walk out of my house each day with my head held up high, proud to show off my journey with my special needs mother hat.

As different as this hat was from the mother hat that I began with, it has begun to resemble the first quite unexpectedly. Yes, it still has all of those rips and tears. It still has those strange flowers on it, but the basics of the hat…are like the first.

What holds one together, holds the other. The hats are both made from the same fabric and are sewn with the same thread. What makes my special needs mother hat strong, is what made my mother hat strong to begin with.

The love I have for my children.

The two hats are not all that different.

Some days my special needs mother hat becomes too heavy or feels too broken to wear. I just can’t pick it up.
So instead? I pick up my first hat.

My mother hat.

As long as I remember that I am still a mother… I know that it’s okay. I know that I don’t have to feel guilty if I have a day or a moment that I just don’t want to wear my special needs mother hat.

When I feel overwhelmed, overtired, overworked, underappreciated,…I just remember that sometimes?

It’s okay to just be a mom first.


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

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