What is it like to have a special needs sister? A 7 year old gives his opinion.

13 Jun

I wonder all the time what it is like growing up as the sibling of a special needs child. My 7 year old son, Kekoa, opened up and answered some questions about life with Oli.

What is the very first memory you have of Oli?
-“I think the first thing that I saw about Oli was that she was blind. Well that, she had ummm…she had no eyes and that was kind of creepy at first.”

Do you remember her getting her first pair of real looking eyes?
-“Ummm..I think I remember. I just saw online that she had the clear ones first.”

What do you want people to know about Oli?
-“I want people to know that just because she doesn’t have eyes, doesn’t mean that she doesn’t know what you’re saying. She understands whatever you say. You should talk to her normal.”

How does it make you feel if people stare at her or say mean things to her?
-“It makes me feel sad. It makes me feel like I’M the person being bullied by those people because she’s my sister.”

What would you say to those people?
-“She’s a normal person. She just doesn’t have eyes.”

What does it feel like to have a sister with a disability?
-“I’m just worried about people being mean to her. Sometimes I worry about her falling down and getting really hurt. I worry about her having to go to the hospital.”

Do you remember the first time Oli had a big seizure and had to be taken to the hospital by ambulance?
-“Yes. I remember daddy telling me to go upstairs. I remember wondering if she was going to be okay. Or was she not. I was just really worried that she wasn’t going to be okay that time.”

Do your friends ask you questions about Oli?
-“Yes. A bunch of times. They ask me like ‘Can she blink?’ I say yes. ‘Why does she have fake eyes?’ I say that people will accept her more because she looks like everyone else. I don’t think it’s very important to look like everyone else because everybody has differences and God just made us that way. That’s the way He wants us to be.”

Are you excited that she started talking again?
-“Yes. Very excited. I think that since she started talking, she’ll start doing other stuff too.”

What kind of stuff do you want her to be able to do?
-“I want her to be able to walk. To have lots of friends. I want her to be able to like do normal things like everybody. I want her to be able to play with me.”

Is it hard at home to have a special needs sister?
-“Sometimes. Because it’s hard to do stuff and concentrate when she’s crying.”

Is it hard because she has lots of therapy and doctor appointments?
-“Well no. Not really.”

Is it hard because it takes more time away from you, for mommy and daddy to help her?
-“Yes. You guys spend more time with Oli, helping her do things, than Ginger and I do. You guys just know more about her than we do. I like to help her. I like to help her walk. I like to hold her hand.”

If you had one wish for Oli, what would it be?
-“I would wish that she would be able to see. And that’s it. I just wish she could see because it would be easier for her.”

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If she was autistic…where did that leave me?

7 Jun

When Oli was two years old, a few drastic changes took place in her life. We moved 1500 miles away. We moved away from one of her grandmas, her aunties, her cousins, and the only house she ever knew. We moved away from her sister.

At the time that we moved, Oli was still taking. On the drive down she repeated the words “up” and “out” over and over and over. It was a looooong drive. I remember that we stopped for breakfast one morning on the second day. My mom asked her what she wanted for breakfast. Oli answered “eggs” and then clapped enthusiastically. My girl loves eggs. She also said “Mom. Dad. Grandma. Koa. Milk. Juice. Eat. Hi. Bye.” Those are just a few.

Six months after we got to Texas, I had another baby. By this point her speech had already started to decline. Ginger was born in March 2010 and by September, Oli had completely stopped speaking.

She did NOT do well when Ginger was born. None of us did. Ginger cried all the time, day and night for 4 months straight. I couldn’t put her down. Ever. She was either eating or crying. She rarely slept. Oli was stressed out and hated the baby. If she heard Ginger near her she would scrunch up her face and push her away. If I tried to get her to hold the baby she would cry. She didn’t understand what she was or why she was so loud.

Oli started stimming more and more. She stopped repeating simple words and didn’t use the words that had been frequent in her vocabulary six months prior.

By Christmas of that year I knew that something had happened. Something else was wrong that had caused her to stop talking. Was it the stress of the move and the birth of her sister? Or was it something else?

I knew that I couldn’t just take her to a regular doctor to evaluate her. Blindness complicated the diagnosis and I didn’t want them to misdiagnose her or misinterpret her behaviors (blindisms) as autistic behaviors because in blind kids they are not.
Most kids born blind have a lot of the same self-stimulatory behaviors that autistic kids have. They have a lot of the same sensory issues too.

Oli constantly shakes her head back and forth. Continually. All day long. (Think Stevie Wonder.) She has done this since she was a year old. She started flapping her hands around 2 years old. She loves to spin and swing and she’ll rock violently back and forth when she’s mad. She’s always seeking more and more input because she is missing the main way that human beings get their information. Through our sight. She puts everything in her mouth. Blind children typically go through a longer oral stage because of the reason I stated above. This is just one more way to get information if you can’t see it.

None of those things set off any alarm bells though. I knew that was just her blindness.

What DID set my heart racing and began to fill it with unspeakable dread and fear? What one thing lead me to question what was wrong with her?

Why did she stop speaking?

It felt like one day she was talking and the next day she just wasn’t.

What would cause this to happen?

One terrifying word came into my mind.

Autism.

I called the research center for anophthalmic and microphthalmic children. The Albert Einstein Medical Center in Philadelphia. I made her an appointment for an evaluation. They had developed a specific clinic staffed with experts on blindness to determine if our kiddos really were autistic or if their behaviors and characteristics were simply the results of being born blind. Many of our kids were receiving the diagnosis of autism when they weren’t and many of them were not being given the label when they were. That team was supposed to be able to clarify and correct the appropriate clinical diagnosis.

So I flew her to Pennsylvania and asked them the million dollar question.

Was my baby girl autistic?

During the months leading up to that evaluation I began to question, pray, bargain, and plead with a God that I had started to lose faith in. I began to cry and scream at him “You made her blind! You made her physically and developmentally delayed! Don’t make her autistic too! Please! I will do anything! ANYTHNG! Don’t make my baby autistic too!”

I laid in bed at night questioning my very life and existence. I began asking questions that I would never receive answers to.

I wondered why He would do this to her? Why would He do this to me?
Why had my life been so easy before? Why had it become so hard?
When was my nightmare going to be over? When was I going to wake up?
The more I prayed and pleaded…the farther away I drifted.
The more questions I asked…the less answers I received.

I flew Oli to Philadelphia with a heavy heart, a stomach full of knots, and an empty soul.

Where was my God? Would He answer my prayers?

I feared that I already knew the answer to those questions.

Where did that leave me now?

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I used to wonder if she would ever have friends.

29 May

As I waited at school with Oli after her therapy, a remarkable thing happened. I watched my daughter interact with two little girls in her kindergarten class. Oli isn’t in her kindergarten class regularly. She is in an FLC (functional learning class). She does attend music twice a week with them and has gone on a field trip with their class.

What I witnessed today at her school…will never be forgotten.

To the little girls I watched in the elementary school hallway, this letter is for you.

Dear little girls,

I watched you today as you walked past us. You were lined up with your class on the way to the library. You looked over towards the entrance and stared at Oli, walking in with me. She was holding my hand, shaking her head, flapping her other hand and humming loudly.

I don’t think you were staring at those things though.

You were staring at your friend as she returned to school.

You both ran excitedly up to her calling her name. “Oli! Oli! It’s Oli! Hi Oli! How are you?”

You touched her arm, leaned in close and said hi again. Then each of you took turns hugging my girl.

You talked to her, touched her and hugged her like you were her best friends. Like she belonged with you. Like you never even noticed that she was any different from you.

It seemed like you didn’t notice that she couldn’t share secrets with you, play like other kids or run and jump on the playground.

Those things didn’t matter to you.

You just treated her like she was your friend.

You didn’t see her face light up behind your back as your arms were wrapped tightly around her. You didn’t see the peace in her hands as she gently ran them down your braid. You didn’t see the light radiate from her smile as you talked to her.

I saw.

You didn’t see the tears well up in my eyes either.

You won’t know how I will forever treasure that moment.

You see girls, when you have a child that is born different from other children, you have certain fears. Certain things that absolutely terrify you. You pray with all of your heart and dream that it will be different and that your fears will not become her reality.

You fear that other kids will be mean to your child. You fear the bullies and the hateful words that can spew from heartless people. You fear that your child won’t have any friends.

You dream that people will understand her. You dream that kids will look past her differences and treat her with compassion and understanding. You dream that your child will never walk the halls, eat lunch or play at recess alone.

As I watched you with Oli today, I saw that everything that I have ever dreamt for her…was standing right before me. It was present in the quiet voices, the gentle touch and the shy smiles that took place between the three of you.

It was present in your friendship.

You’ll never understand what you have done for me today. I don’t even think you’ll understand what you have done for Oli.

I understand though. I know what it means to have children who love her for who she is.

If my daughter grows up around children like you…she will NEVER feel apart from. She will ALWAYS feel a part of.

In your single act of kindness, something that you didn’t even think twice of before acting on, you have erased some of my fears.

I will sleep well tonight, little girls.

I will sleep well knowing that my daughter is not alone and that she has people like you to walk beside her.

Thank you.

From the bottom of my heart…

Thank you.

*tears* Oli has friends.

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WHAT DO CILANTRO, GHOSTS, A DESERTED ISLAND AND MY MOM HAVE IN COMMON?

24 May

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Looky here now. I won an award y’all. Actually, if I want to get all braggity brag brag about it, I won a few awards. Thank you. Thank you. I have so many people to recognize and show my appreciation and gratitude to. (Picture me here, standing on a grand stage, wearing a flowing sparkly dress, pretty, sparkly jewelry and big poofy hair. I don’t really have poofy hair, but if I’m winning awards I need my imaginary hair to be poofy.)

I’m going to do this thing a bit whacked from how you’re technically supposed to do the Liebster Award thingy. What? I can if I want to. Yes I can. Stop arguing with me. I can. Shush.

*cue music*

It’s my blo-og and I’ll do what I waa-nt to. I’ll do what I waa-nt to. I’ll do what I waa-nt to. You would do it too if you let all your awards pile up and sucked and didn’t write a post about them and pay it forward and are trying to do it all nooooooooooow.

*Okay. Turn off the music. Let’s get on with this thing.*

I was nominated for the Liebster award by some fantastic blogger friends. Click on the names to find their pages. The Precious Princess’s guide to Bananaland. It’s why you like me. Little steps. Tried, Tested and True Mommy. You should click on them. Really. Click click click people. Good reads right there.

Rules of the Liebster Award are:

1. Tag the person or errrr….people that nominated you. Checkity check check check.
2. Answer 11 questions that they have given you.
3. List 11 random facts about yourself.
4. Nominate 11 other bloggers for the award.
5. List 11 questions for the nominees to answer.

So because I have let this award and…ahem…others….pile up, (Shut. It. I know. I know. Class A bloghole right here) I have to combine my 11 questions from all four of these lovely ladies, to answer. Which works out extremely well for me because I just get to pick 11 out of the 44 that they have given me, that I want to answer. SCORE!

Ready? Ready. Aaannnddd GO!!

1. If you could haunt someone, who would it be & why?

I would haunt my husband and my mom. My husband because it would totally freak him out. Seriously. He would flip the **** out. It makes me laugh just thinking about it. I like to laugh alive so I’m pretty sure that I would like to laugh when I’m dead. He would give me great big side ache, pee your pants laughs.
I would haunt my mom because although she might be freaked at first, she would know it was me and then it would be all good. She’d talk to me and try to feed me. She’d make my favorite snacks, leave a spot on the couch for me, turn on the TV and let me watch all my favorite shows. Although I couldn’t really eat the snacks or talk back to her, it would still be fun. I always have fun with my mom. If I die before her I hope that we can still have fun together. Mom? P.S. I’m going to haunt you.

2. If you could go back in time, what era would you visit?

Probably the 20’s. Just for the hats, the hair styles and the dresses. I know. I know. I’m a girl. What can I say?

3. What 3 things would you take on a deserted island (excluding husband and children)?

My mom. What? You didn’t say I couldn’t bring my mom. I’d bring my mom, some fabric, needles and thread. You can’t count the needles. I’d hide them in my clothes so the deserted island inspector of what you bring’er would only see my mom, fabric and thread. See? Three things. I’d be good. My mom can make anything from nothing. I’d have banana leaf dresses, kick ass palm tree hats, coconut shoes. I’d be the most stylish person ever to grace that island. A plane flying overhead would spot me in all of my fabulousness, they’d swoop down to inspect my digs and rescue us right there on the spot. Then I would be whisked away to Hollywood where I would be awarded with a Winner of Best Dressed on a Deserted Island Award. It would be awesome.

4. What is your favorite color?

Yellow. Duh. Bananas, the sun, Big Bird…All things spectacular are yellow. I just need someone to buy me a yellow corvette and my life would be complete.

5. Wine or beer?

Ummm…well? Neither. I don’t drink. Okay. Okay. I will wait here a moment while y’all wrap your head around that concept.
…
…
…
Better?
Nope. I don’t drink. Shhhh. It’ll be alright. Strange, wacky, foreign concept in our society, huh? I used to drink. It just didn’t work out so well for me, so now I don’t. It’s okay. I still eat chocolate and I have coffee. Thank God I have coffee!!

6. If you were to write a memoir, what title would you give it?

I’m fine, but my mommy has issues. A memoir in the making already, right?!!

7. If you were a Superhero, what power would you have?

Oh what an easy peasy question! I’d be able to stop time. For sure!!! Hello?!! What I could get done in a day if I could stop time!! Tired and kids are being annoying and all kid like? Stop time. Nap time. Want to write a great blog post, but don’t have the time? Stop time. Nap time. Oh. I mean blog time. The possibilities are endless.

8. If you could ask your future self one question, what would it be?

Soooo…How’d it all turn out?

9. Do you want to go where everyone knows your name?

I ONLY go where everyone knows my name! Seriously. You’ve never heard of me? Well that’s just down right shocking! Everyone knows me!

10. Do you like birds?

No. They have the ability to poop on my head.

11. Who is your guilty pleasure music artist?

I have so many! This is a very difficult question. Nine Inch Nails? Nirvana? Smashing Pumpkins? Stone Temple Pilots? The list is endless. I’m going with my man Trent Reznor. NAILS FOR THE WIN!!

Whew! That was a lot of questions. Now I have to give you 11 random facts about myself. Hold on people. It will soon be over. I promise.

1. I hate olives.
2. I hate cilantro.
3. If somebody kidnapped me and said I either had to eat olives and cilantro or they would cut off my finger….I would eat the olives and cilantro. What? I hate ‘em, but I need my fingers yo!!
4. I had a recurring dream of being blind, until I had Oli. Never had that dream since.
5. When I was 15 I snuck out of my house, got caught, was dragged inside my house by my dad and then jumped off the balcony to escape my furious parents. I broke my leg.
6. I’m a born swimmer. In a past life I was some kind of fish.
7. I love ghosts and ghost stories. I’ve had so many experiences that I cannot deny the existence of “something else”. I don’t know exactly what it is, but I’m convinced that it’s there.
8. I was haunted by a deceased friend of mine for 2 years.
9. I dream big. I really do believe that anything is possible.
10. My husband is my soul mate. I knew it the first time I saw him.
11. Rain makes me nervous. Every time something bad has happened in my life, it has been raining. I have a love/hate relationship with it.

Okay guys, we’re almost done. Here are my 11 nominations.

1. The Momma Bear Chronicles.
2. My Thoughts on a Page.
3. Next Life, NO Kids
4. My Dance in the Rain
5. The Zookeepers Wife
6. Mama Gone Mad
7. Chopping Potatoes
8. My Life as Lucille
9. The Sadder, but Wiser Girl
10. Folk Haven
11. Super baby Faith

Next I’m supposed to give these nominees 11 questions to answer, but you know what? I’m not going to. Nope. You know why? Because I’m a rule breaker. Yep. A rule breaker and I like it. Also because my kids are whining and saying something about food and attention and other such nonsense. Kids. Psshht. Instead I’m going to just have the nominees answer the same 11 questions that I answered above. Lame. I know. What can I tell you?

Thanks again to The Precious Princess’s guide to Bananaland, It’s why you like me, Tried Tested and True Mommy and Little Steps for the award.

Muah!

I have been Carly’d, Stevie Wonder’d, Ray Charles’d and Andrea Bocelli’d.

23 May

I read a post the other day written by Living on the spectrum: The Connor Chronicles called “Have you been Carly’d recently? The blogger has a child with autism and she talks about people comparing her child to Carly. You can read her fantastic post HERE.

If you have a child with autism you know Carly. The amazing autistic girl featured on 20/20. You can watch that video HERE.

Carly was completely non-verbal and autism rendered her unable to communicate with anyone until she found that she could use a computer. Once she discovered speech and language through a keyboard, her entire world opened up. She was discovered to be a “normal” highly intelligent young girl locked within the confines of her own body without the use of her voice. Her fingers became her voice and a link between her and the rest of the world was forged.

It’s truly an amazing and remarkable story.

Unfortunately…it is also a very very uncommon occurrence.

Most of the children who are autistic will not have an experience like Carly. 40% of children with autism also have the diagnosis of an intellectual disability.

Oli has that dual diagnosis along with several others.

Oli will probably never have a Carly experience. She might…but she probably won’t for several other reasons. Her diagnoses plus her blindness complicates matters. It’s perfectly fine if she doesn’t end up being like Carly. She will find her voice in another way.

Many autism families have been Carly’d.

Strangers, friends and family say “Hey! Have you heard of Carly? I bet that can happen to your child too!” This is what the Connor Chronicles blogger specifically wrote about.

I have been Carly’d.

A lot of us probably have been, by well meaning, good hearted people, who just want to give us hope.

The most interesting thing is that I have been Carly’d. I have been Stevie Wonder’d. I’ve been Ray Charles’d. I have been Andrea Bocelli’d. I think that it just happens when you have a child with a disability. People look to that one person with a similar condition that has gone above and beyond and exceeded all expectations of the prognosis laid upon him.

When Oli was born people would always tell me stories of so and so who was blind and did this amazing thing or that amazing thing. They would tell me that she would probably grow up to be a famous musician or a composer. A singer, a piano player, a drummer, a guitarist…because you know Stevie Wonder is blind and he’s musically inclined. So Oli will be too because she’s blind. All blind people have musical talents.

Ummm…well? Not really. No. She’s doesn’t really.

She loves music. She really really loves it.

However… Musically inclined? Not so much.

She loves to bang on everything. Is that drumming? I could probably put her in a heavy metal band and maybe no one would know the difference.

She doesn’t know how to keep a tempo. She bangs on the keys of a piano. She can’t actually “play” anything. She does love music, but I’m not so sure that she will ever be like Stevie Wonder.

And that’s okay.

Oli is Oli. She doesn’t have to be anyone else.

I really think that we need to stop trying to compare our kids with disabilities to others who have a similar diagnosis, but not so common outcomes.

If my African American friend had a baby I wouldn’t look at her and say “Do you know Michael Jordan? I bet your baby will be just like him because he’s black.” Ridiculous right?!

In a sense, that’s basically what we are doing when we say these types of things to parents of special needs kids. We’re placing extremely high expectations on that child and that parent because WE are uncomfortable. Because WE don’t know what else to say. Because WE want to give hope to that parent. Because we WANT to say the right thing.

The truth is…that parent might not need that kind of hope.

That parent probably already believes in that child and knows that they will be an amazing individual regardless of what others before them have done.

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I am a child.

20 May

Oli is 6 years old, blind and autistic. Her autism has left her non-verbal.

I know that I don’t really know what she thinks about, what she dreams about, or what she would want to say.

But because I am her mom, I get the honor of speaking for her until she finds her words.

Here is what I think Oli would want you to know about her.

“Hi! My name is Oli. I know that my mom gets this look from strangers when she tells them about me or when they meet me for the first time. She calls it “the look”. I don’t know what “the look” looks like because I can’t see it, but I know that it makes my mommy sad.

I know that it makes her sad because I can hear it in her voice when she talks about it. I can feel it in the way her shoulders sag when she thinks about it. And I can taste it in the tears that roll down her face when she cries about it when she thinks no one is looking. I’m looking. I’m always looking because I know my mommy better than she thinks I do.

I know that “the look” hurts my mommy’s feelings.

I also hear her talking about it with my daddy. I hear her tell him that this look means that people feel sorry for her. That they feel sorry for me.

Most importantly, I hear her tell daddy that people don’t need to feel sorry for her or for me. She also tells ME that I don’t need to feel sorry for MYSELF. That there is nothing wrong with me. I just do things differently than other children.

Despite our differences, I’m still a child.

I want you to know that the way I am… is not wrong. That the way your child is…is not right. It’s just different.

I’m here to tell you that you don’t need to feel sorry for me. You don’t need to pity my family. I am fine. I will do what I will do when the time is right. My parents will push me and advocate for me. They believe in me and I will do everything that I can in this life. My life is not sad. My life does not deserve your tears. It should be celebrated. Please don’t be sad for me.

I am only a child. A child with special needs yes, but still a child.

I know that I’m not the same as you. I know that there are things that I do that might seem strange. I don’t understand what they are, nor could I tell you why I do those things. All I can tell you is that I have to do them. That is just part of me.

I have a wonderful life. I live life to the fullest and I enjoy most of every day. I have good days and bad days just like every other 6 year old. I cry when I don’t get my way. I smile when I do. I throw tantrums when I don’t get what I want. I give kisses and hugs when I do. I don’t listen when I don’t want to do what you’re telling me to do. I listen when I do. I giggle. I test boundaries. I play. I am a child.

I am my parent’s child.

They are proud of me. They love me. They are not ashamed of me. They don’t feel sorry for me.

Neither should you.

Mommy and daddy bring new people into our house sometimes. New therapists, friends, and family I haven’t seen in a long time. I can feel their tension. Sometimes they don’t know what to do with me. How to touch me or talk to me. How to play with me.

I know that other people don’t understand my life, but you don’t need to feel uncomfortable around me. You don’t need to be frightened or nervous. Interacting with me cannot be done wrong.

Just remember…

I am a child.

I may be different than your child, but I am still a child.

I’m just Oli.”

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Special kids make parents special.

15 May

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

This…is my truth.

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

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

This isn’t true.

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

I didn’t have a choice.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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Living within the isolation of myself.

14 May

We moved from Pahrump, NV to Round Rock, TX on October 1, 2009.

By the time we moved I was exhausted. Mentally exhausted.

Living in that desolate island of fear, tears, sand and mountains had completely depleted me. I felt so alone. Although my mom only lived a few minutes away and my husband was with me…I was alone.

I had submerged myself so deeply in self-pity and self-hatred, blame, guilt, remorse, and those constant day dreams of what might have been, I was beyond reach of anyone else. I was alone in a dark, sad, tear-filled cocoon of my own making.

I couldn’t wait to move. I had pushed everyone away. I would talk with my friends, listen to stories about their children, the whole time thinking to myself “You don’t understand. You just don’t understand how hard this is for me.” They didn’t understand. Because I never told anyone. Moving seemed like the best solution at that point. I thought that if I changed my outside, if I changed my zip code, that it would change the way that I felt.

I had convinced myself that it was all because Oli didn’t have enough support. That it was because I didn’t have enough support. It was. But, it wasn’t. Oli did need more help with people experienced in blindness, but I had some support. I just couldn’t see it then.

I had met and made friends with other moms who had visually impaired kids. I had become good friends and remain friends with some of them. None of them were totally blind though. I had led myself to believe that because their kids weren’t totally blind, that they didn’t really understand what it was like.

I had made it US vs. THEM.

I had isolated myself even against the people who knew what it was like. I was looking for all of the differences in our lives rather than the similarities. I think some part of me enjoyed that feeling of isolation. Some part of me liked feeling sorry for myself and enjoyed believing that I was the only one in the world who felt the way that I did. That no one could possibly understand my struggles.

It just simply wasn’t true though.

LOTS of people knew how I felt.

If I just would have stopped for a second and looked outside myself, I would have seen that. I would have seen that I had people surrounding me that wanted to help me. They wanted to understand what I was going through. If I would have made myself available to them…if I would have made myself a little vulnerable…I would have seen that.

I didn’t.

I didn’t when we lived in Nevada and I didn’t when we first got to Texas.

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My life as mom.

12 May

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

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

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

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

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

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

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

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

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

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

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

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

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HAPPY 6TH BIRTHDAY OLIANA!! MAY 10TH 2013

10 May

I made a slideshow for Oli’s 6th birthday. *Warning* Content may cause viewers to burst into tears. Use extreme caution when viewing and the use of tissues and/or sleeves is advised:) I hope you guys enjoy the pictures, the story, and the music.

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