Archive | March, 2014

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)

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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.

Why?

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.

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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 http://livewithaheartforedanielle.com/.

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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.

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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.

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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”.

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“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.

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

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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.

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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.

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And he’s excited to do it again.

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