But she might…

8 May
As soon as my tires hit the gravel and I pull into R.O.C.K where Oli rides her horse, she gets THIS look on her face. She knows exactly where we are and what is about to happen. Then I say, "Oli we're HERE!!! It's time to ride your horse!" And she starts frantically clapping and yelling. She knows. No one can tell me that she doesn't understand. Just look at her face. I KNOW she knows.

As soon as my tires hit the gravel and I pull into R.O.C.K where Oli rides her horse, she gets THIS look on her face. She knows exactly where we are and what is about to happen. Then I say, “Oli we’re HERE!!! It’s time to ride your horse!” And she starts frantically clapping and yelling. She knows. No one can tell me that she doesn’t understand. Just look at her face. I KNOW she knows.

I posted this picture on my facebook page today. I posted it to show an example of what one of Oli’s expressions look like. This is an expression of “I know what is happening and I’m going to sit really quietly for a second and then I’m going to get really excited because I love what we’re about to do”. She has LOTS of these looks.

Some people have told me throughout her life that because she has an intellectual disability, is delayed and has autism, she doesn’t understand. That she couldn’t possibly understand because she doesn’t speak and because her cognitive development is delayed. We know that she is missing some of her genes off of her 14th chromosome. We know that this has affected her development and her learning. We know because she has done everything later than everyone else. We know that. I know that.

I know that despite being told that she may never walk independently, eat independently, have anticipation of events, be aware of her surroundings, have a sense of humor, the ability to laugh and to love, be funny, be brave, show strength and determination, cry, be sad, be mad, get frustrated… she has. I know that she has proved those people wrong every single time. And I know that she DOES understand. She does. I know because I KNOW her. Sometimes I feel like I know her better than I know myself. For whatever reason, she just can’t tell me what she understands with words.

I know that I may NOT know exactly what she is capable of in the future, but that I will ALWAYS give her a chance.

I know that I will ALWAYS believe in her.

ALWAYS.

That’s my job as her mother.

To believe in her despite all the odds, the challenges, the setbacks, the regression, the frustration and tears. Despite text books that tell me what she will or won’t do. Despite well educated doctor’s opinions and the opinions of the rest of the world. I will believe in her. I will never expect her to do less than her very best and I will never accept the words “She will never…”.

Because she might.

Because she probably will.

And even if she doesn’t do something or say something, I will go to my grave believing that it is still possible.

Some may call that naïve or say that I’m in denial. I’m not. I know that there is always the possibility that she will never move out, go to college, or get married.

But she might…

I will never ever be able to look into her sweet face and not see the sky as the limit. I will never take anyone else’s opinion on what she will or won’t do as fact. Oli will have to prove it to me. And even then, I will still push her. I will push her to have confidence and believe in herself. To set goals and achieve them. I will push her to develop her own sense of identity and to be kind. To love other people and to be respectful. To be understanding and to be grateful for what she has. To live and to laugh and to never look back. To view past mistakes as learning opportunities and chances to grow. To greet each day with optimism, and with a smile on her face, and to act better than she feels. To know that every day will not be perfect, but that’s okay. I want to push her to do her best with what she has and to be proud of who she is. I want her to be prideful instead of pitiful. I never want the world to take pity on her and I never want her to feel like she deserves it when they do.
Because they will.

She may never be able to do these things.

But she might…

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Leaving a child behind

1 May

After what seemed like an hour, but was more likely only a few minutes, I dared to sneak a glance at my husband. His face was a silhouette against the window of our car. With the sun setting orange behind him I could just make out the corners of his lips turning upwards in a smile.

“Move? You really think we need to move?” He asked, sparing a glance at me and momentarily taking his eyes off the road.

“I do. I think that we really should. Oli’s vision teacher is always telling us how great Austin, TX is. I think we should look into it.” I answer.

“Okay. I’m in. She just isn’t getting the amount of services that she needs. She needs occupational therapy and speech. She needs more physical therapy and orientation and mobility. I agree. Las Vegas, NV is definitely not the best place to raise a special needs daughter. Let me talk to my company and see what they can do. Maybe I could somehow transfer.”

And that was it.

The decision to move my family was made on a hot summer day in August 2009 on the drive back from California after a trip there for my birthday.

There were no arguments and no one resisted the change. We simply decided to move.

Bittersweet tears were shed by my husband. He was happy for Oli, but sad for who he was leaving behind. Moving to Texas meant leaving his two sisters, two nephews, one niece and his mother behind in Vegas. It also meant moving much, much farther away from his daughter, my step daughter Thalia, who lived with her mother in San Diego, CA. She was 11 years old at the time.

I didn’t appreciate then what an enormous amount of strength and courage that decision took for him. What it meant to leave a child and move somewhere where he would only see her once every 6-9 months instead of every month. He made the type of decision for Oli, which I’m not sure that I could have ever made. He made a choice to help one child, who may have needed it more, with the sacrifice of not seeing the other. Their relationship would remain tightly intact via computers and nightly phone calls. Many many phone calls.

And many many tears.

Many tears of sadness and loneliness were, and still are, shed on behalf of Thalia.

Some days he gets lost without his oldest daughter.

Sometimes I wonder if he regrets leaving.

I wonder if he thinks it was worth it.

I’m sure most days he thinks that it was. And then. . .I’m sure there are others where the pain and the sadness are too much. Days where he longs to feel the touch of her sweet embrace and see the warmth of her beautiful smile.

I do know that every day he misses her. Every. Single. Day.

We both do.

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Heartache written on a piece of paper

1 May

Before I move on with my story, I have to write about Oli’s mandatory 3 year evaluation for school. They evaluate her to determine her progress and also to determine whether or not she still meets the eligibility qualifications for services. She’ll be 6 years old on May 10th.

O&M was the first evaluation scheduled to be completed. O&M stands for orientation and mobility and focuses on body awareness, spacial concepts, walking and navigating around the environment as a blind or visually impaired child. As a totally blind kiddo, Oli always qualifies for O&M. Her O&M instructor is absolutely fabulous. She is a wonderful woman and teacher and I really like and respect her. She has been with Oli since we moved to Texas when she only was 2 ½ years old.

I have to tell you that, before I get into the results of her evaluation. Before I tell you how little progress Oli seems to have made in the last 3 years. This is NOT, in any way, a reflection on her teacher.

This is just Oli. This has always been Oli.

You see, progress is slow with her. She does do new things and accomplishes goals every once in a while. It just doesn’t happen very quickly or very often.

It’s hard.

It’s so hard to watch your child work so hard and struggle. To try and to fail. To improve and do something new, only to have it slip away. Some of her new skills have diminished and then disappeared completely. At the beginning of the school year Oli was standing up from the middle of the floor all by herself. She would just stand up and every once in a while she would start walking. Just like any other kid. Then it stopped. It stopped completely and she hasn’t done it at all in 8 months.

Is that skill gone forever? Did she have a seizure that wiped it away? Did she forget how to do it? Did something scare her? Why does she lose these skills so easily?

I don’t know.

That is my universal answer when teachers and therapists ask me “Why doesn’t she do that anymore?”

I don’t know. I don’t have any idea.

I wish I did. I wish I could take a peek inside her brain and figure it out for her. I wish I could just look at her and say “Remember when you did that? Or said that? Can you do it again please?” I wish I had an answer. Something better than, “I don’t know?”

That’s not how it works though. What is the problem for her? Why does she struggle through learning simple things? Why can’t she be potty trained or pull up her pants? Why can’t she remember where her nose is consistently or say hi? Why doesn’t she tell me that she wants eggs for breakfast or tell me she wants to play with the bells? She used to do all of these things.

Why can’t she tell me that she loves me?

So many questions and so very few answers.

Is it her autism, her blindness, her developmental delay, her intellectual disability? What is it?

No one can tell me because they all overlap.

No one has any answers, but everyone asks me. Because I’m her mom. I should know. At least, I feel like I should know.

I’ve never known the most profound sense of helplessness since meeting my baby girl. I’ve never felt so out of control on all things that feel like they need to be controlled.

I’m her mom. I should know what’s going on with her.

But, I don’t. I never have.

I’ve read a few other blog posts written by moms of kids with disabilities and they talk about looking at other moms and being jealous of them and their children. I understand that. I try not to compare my daughter to anybody else’s children, mainly because I did that WAY too much in the beginning, but sometimes…I still do. Not in the uuuggghhh…I hate you because you don’t know how good you’ve got it…way. But…uuuggghhh…Look how easy it is for your kids. I just wish life wasn’t so hard for her…way. I’m jealous of other special needs kids who learn things easier than her or kids that don’t have multiple disabilities. But then I HATE myself for thinking that way because it’s ridiculous. I don’t know that life is any easier for them or any harder for my daughter. There are a lot of kids out there in way more difficult situations. These are things that just should not be compared.

I think sometimes I just want her to get better.

I look at my other two kids and it just all comes so naturally for them. They just learn. No big deal. For Oli everything is such a bigger deal. She can’t see so right there, it’s a whole new ball game trying to teach her. And then her body just doesn’t work all that well. It seems like she wants it to do things and it just doesn’t. She has low tone and poor balance. Her arms are weak. She needs a very long time mentally and in terms of motor planning just to figure out where she’s going and how she’s supposed to get there.

It just isn’t easy.

Reading these evaluations…isn’t easy.

It’s always hard to read the same evaluation year after year.

It’s hard to read “She used to do this…She used to say this…but now she doesn’t.”

It’s hard because I know she’s in there. I know what she’s capable of. I just don’t know why it comes and goes. I don’t know how to make it any better for her.

She does therapy and therapy and more therapy. She gets PT, OT, speech, vision, and O&M at school. She gets PT, OT, speech, and hippotherapy at home. I just always feel like maybe there’s more. Maybe there is that one therapy out there that we’re not doing and that will be the key that unlocks the door.

In my brain I know that it probably doesn’t exist. In my brain I know that we are doing everything.

In my heart? I want to do more.

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IN MY DREAMS, SHE FALLS OFF THE CLIFF

29 Apr

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

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

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

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

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

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

It terrifies me.

The third dream I had last night.

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

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

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

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

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

And then I woke up.

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

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

With Oli… I have. I still do.

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

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

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Would Things Have Been Different?

24 Apr

Driving down to California that hot day in July, gave me a lot of time to reflect on what had happened during the previous 3 years. I started thinking about the year that I turned 27, 10 months before Oli was born.

Kekoa was only 7 months old. I have a picture of him and me on my birthday that year. He was sitting on my lap helping me to eat a piece of cake. What strikes me most in that photo is how young I look. How peaceful. The worry of doctor appointments, evaluation deadlines, and missed milestones had not yet been etched on my face. That deep penetrating sadness cannot yet be seen reflecting in my eyes. Grief cannot yet be seen shadowed over my shoulder. I had no idea what my life would look like just 3 short years later.

I can’t help but think about what my life would have looked like if I hadn’t had Oli.

Would I still be ignorant to things such as early intervention services, occupational and speech therapists, VI teachers and O & M specialists? Would I miss the looks that strangers give to those who are different than them? Those looks that say, “What is wrong with her? Oh! What is wrong with her?!” Those looks that break my heart. Would I be oblivious to the passing remarks containing the word “retard” or the jokes made about blind people? Would I miss spotting the looks of exhaustion and overwhelming sadness that I see painted all over the faces of other special needs moms? Would I appreciate every single day with my children as much as I do now because I fear that I don’t know what the future will hold? Would I cherish their kisses as sweetly or hold on as tightly when they wrap their arms around me? Would I have learned to walk through the grief and come out on the other side stronger and more secure than ever before?

These are all things that I thought about, but did not have the answers to yet, in July of 2009. That year my sole focus was still on changing it. I wanted to change my life however I could so that I would begin to feel better. I needed to feel like I was DOING something for Oli. Being her mother just wasn’t enough.

As I was lying on the beach or trying to sleep in a strange bed that weekend, I became consumed with what I could do for her.

What I was doing wasn’t enough.
It wasn’t enough.
I should be doing more.
Other mothers were doing more for their kids.
I needed more.
I needed to do more.
I have to get out.
I have to get out of Nevada.
They can’t help her.
They can’t give her the help that she needs.
There has to be more.
There has to be a place that can do more.

My mind was trapped on a hamster wheel, spinning, spinning, and spinning. Chasing an unseen assailant that was ruining my life. Chasing a dream that I would be able to change it all. A dream where I was able to fix this somehow.

Still…a dream that I would wake up to a daughter who was “normal”. A daughter who was not blind and developmentally delayed. That dream that I secretly lived in while the world moved on without me. The world moved on and left me alone with my self-doubt, self-pity, and self-hatred.

Because I didn’t want to feel this way.

I wanted to just love her and believe in her.

I DID love her and I DID believe in her.

I didn’t JUST do it though.

I thought that all of those feeling were abnormal. I thought that they were wrong. And I thought that they made me a bad person. A bad mother. Even though those thoughts were my truth. They were my reality and no matter how much I tried to ignore them, forget them, and deny them…they were always there.

They were there taunting me, shaming me, and making it difficult for me to breath.

They told me lies like, you are alone. You are a failure. No other mother in the world feels like you do. You don’t deserve to have these beautiful children. You are not good enough. You will never be able to do enough. You can’t help her. You will ALWAYS feel this way. You will always be terrified, sad, and miserable.

And I was. For a very long time I was.

I didn’t know what was making me feel that way though.

All I knew? I was unhappy and I needed more support. I needed more support for my daughter.

I waited until we began our drive back to Pahrump to broach the subject with my husband.

As the sun dipped silently beneath soft orange clouds I built up the courage to say, “I was thinking…maybe we need to look into moving to another state. Somewhere that has more vision services and can help us better.”

A million butterflies danced and turned somersaults in my stomach as I looked at my husband, waiting for his response. You could have cut the tension in the air with a knife, once those words were out of my mouth.

A few minutes past and then my husband spoke…

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I drive my husband nuts.

23 Apr

(Back to my Oli story…)

I woke up one morning at the end of July 2009, to a request to pack my suitcase.

“Where are we going?” I asked.

“I can’t tell you, just pack some clothes. Oh, and can you pack for the kids too?” My husband looks at me sheepishly.

“How am I supposed to pack for everyone if I don’t know where we are going? I will only pack if you tell me what I am packing for.” I reply in my true party pooper nature.

“We are going somewhere for your 30th birthday. If you want that surprise that you say that I never treat you to, you will close your mouth and just pack. Please. Be a nice girl and just pack and don’t make me ruin it for you.” My husband begs me.

But, alas, I am never one to make things easy on him. I start guessing.

“Camping? We’re going camping aren’t we? I don’t want to go camping. I love it, but I didn’t imagine my birthday so full of mud and dirt and so NOT full of bathrooms and showers and fully cooked meals.”

“No. We’re not going camping.” Seth responds. “Go pack.”

“The mountains. We’re going to the mountains aren’t we? I don’t know about that? It might be cold at night and then Oli won’t sleep and then I’ll be grouchy and you’ll be grouchy and then it will just suck and I’ll want to come home because the children will make me crazy.” I’m imagining snow covered mountains at 3 am and watching a beautiful sunrise amongst other patients in the looney bin. All of us wrapped cozily in straight jackets being sent there by our lovely children and our husbands wayward attempts at disastrous surprise birthday trips.

“No. We’re not going to the mountains. Now just go pack! Why do you have to make this so difficult?”

“Because that’s just me and that’s why you love me.” I reply with a sweet smile and a voice dripping with sarcasm.

“Are we going to Hawaii? I LOVE Hawaii! That would be the best birthday present ever! I could totally handle mud, dirt, non sleeping children and the looney bin in Hawaii! Let’s go there!”

“You’re not going to play nice are you? You’re going to make me tell you.” He smiles despite his annoyance because he knows me so well and had been planning on telling me the whole time.

“No and yes. No I won’t play nice and yes I will make you tell me.”

He shrugs and lets out an over embellished sigh. “Okay. If that’s what you want my darling, annoying, party pooper wife. We’re going to California. I rented a house for 3 days on the beach. Happy?”

“Yay! Yes! Yes I’m happy! I love California! Now I’ll go pack. What should I bring? What if it’s too hot? What if the kids get sunburned? I need lots of sunscreen. Did you pack the beach umbrella? Do we need to pack food for the house before or after we get there? Should I wear my blue bikini or my red one? Good thing I’m not showing with this baby yet. What about clothes for at night? It gets cool at night. Should I pack coats for the kids? What are you bringing?”

“Aaaaaggghhh! Shannon! YOU are making ME crazy! I’M the one who will end up in the looney bin at the end of all this! Just GO PACK!”

I smile sweetly at him again. He loves me.

Maybe this whole turning 30 thing won’t be as bad as I thought. There is one thing that we do have to discuss while we’re gone. Something that has been running through my mind and keeping me up at night.

We need to move. We need to get out of Pahrump, NV.

We need to go some place that isn’t so isolated and has better services for Oli. I can’t stand the hour long drive to doctor appointments and the minimal therapy services she is receiving. We have to do better for her. We have to go someplace that can help her to learn and to thrive in this world as a blind child. We need to go where doctors understand her and therapists know how to teach someone who can’t see. Some place where she will not be an unusual case with an unknown condition.

I have to get out of this town. I feel like I’m drowning in a sea of uncertainty and suffocating on loneliness. I feel like if we could just get out and go someplace where people could help us, that it would all change. I wouldn’t feel like I was so weighed down by Oli’s disability and maybe I could learn to cope better. Maybe I would stop pretending that I was fine and I could start being honest. Maybe I would be able to tell someone that I hated this. I hated the fact that Oli wasn’t what I had imagined. Maybe I could tell someone that I was terrified of this baby that I was going to give birth to in 9 months. Maybe things would be different in a different place. Maybe I could let go of the hatred that I held for the way I felt. Maybe…Maybe I could just accept it and move on.

I’m thinking Texas. I’m thinking Austin, TX sounds like it would be a good place for my family. I hope my husband agrees… He’s going to get a surprise of his own this weekend.

Surprise honey! I want to move!

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Chasing Rainbows and Running from Bombs

16 Apr

I’ve been thinking about writing this post since I heard about Gavin’s (Chasing Rainbows)death. He was 5 1/2 years old. He was a special needs child with special gifts and special parents and a special brother. If you haven’t read his mom’s blog yet or visited her facebook page, please do. You will be changed forever.

I’m sure I’m like most parents of special needs kids when hearing that one of our family has passed. I think, “What if that was my Oli? What if it was me taking pictures of my sweet girl as they wheeled her down the hall for the last time? What it was me giving her a bath and a kiss for the very last time?”

And then I sob and I cry and my heart breaks for this mother all over again.

I like to think of them as family because we are all in this together. Gathering inspiration and support, raising awareness about differences and forging our way trying to make an impact and an impression on the world that our kids are just like everyone’s else’s kids. Just a little bit different in more obvious ways.

I think that Gavin and his parents did that in his few short years on this Earth. He did the impossible. He made a difference. And he did it with his life and his death. His mother and father also achieved a rarely attained goal. They have changed the world.. They have changed the world by sharing their story with us. Sharing their heart ache and their pain. Sharing their courage and strength with honest words and tear stained faces. They have taken an unimaginable, horribly sad event and maintained dignity and grace while the earth shakes beneath their feet. They have made selfless choices and decided that despite their grief and darkness they have chosen to give another family light. They tried to donate Gavin’s organs.

This was not to be however.

Part of his liver was unusable so it rendered the entire organ unusable. His corneas were not able to be transplanted either. Rather than be shattered by this one positive that his family was clinging to, his mother maintained her poise and managed to never lose sight of what life is really all about.

Living life on life’s terms.

She talks about giving gifts and expecting nothing in return. Because that’s what a gift really is. And if it doesn’t work out? Then it doesn’t work out. They tried. I will stop there because I REALLY encourage you to visit her blog and read her story. Like I said…it will change you.

So I’ve been thinking about this family. Gavin, his mother Kate, his dad Ed and his brother Brian. This family that I have never met, never spoken to, never “met” on facebook or on her blog. I know nothing about them other than what I have read and what others have posted about them. I don’t know them and yet I’ve been praying for this little boy whose pictures I can’t stop looking at and whose sweet little face that I can’t seem to get out of my head. And then I ask the obvious question.

Why?

Why do these things happen? Why did such a small, defenseless, amazing little boy have to lose his battle so early on. Why? He has touched so many people. He has given so many people strength and courage and taught others to continue on in the face of difficult situations, in spite of labels and disabilities and the unknown. He just continued on. He lived and he loved just like so many other little 5 year old boys. Except that he wasn’t. He was Gavin. And for some reason people were drawn to this little guy and his story. They were drawn to the way that he lived his life.

Just like people are drawn to my Oli.

I don’t know why these things happen. I don’t know why people are drawn to these little people who never even utter a word. I think it’s because of what I stated above. It’s because of the way that they live their lives. Just like my Oli, Gavin showed courage in fearful situations and strength where others would be weak. He celebrated accomplishments with the ferocity of an Olympic athlete. Because life is not always easy for our kids, but they carry on. The carry on despite slow progress and others telling them what they can and cannot do. They carry on and thrive and progress and amaze people every day. They reward us and surprise us every single day. They make possible the impossible.

And I don’t know why Gavin had to die. But I do know that although he is gone, he will NEVER be forgotten. I know that people all over the world are fulfilling his mothers wish for random acts of kindness in Gavin’s name. I know that he had a purpose and his purpose is to continue to be an inspiration. Continue to be that light in the darkness.

Little Gavin lost his life yesterday and then the bombings at the Boston Marathon happened. Another little boy died. A little boy who also has a name. His name was Richard and he was only 8 years old. I thought, “I wonder if this family has seen this? I wonder if they know that another little boy died today?” And I can’t make sense of that either? I can’t make sense of the fact that Gavin got sick and died, but Richard wasn’t sick at all. He didn’t get an infection or have cancer. He didn’t get into a car accident or anything else. His life was taken. Taken, on purpose, by another human being.

How do you go on after that? I cannot imagine either one happening, but the rage and the anger that I would feel if someone else stole my child from me…would never be forgotten. How do you see the positive in that? How do you get to the light?

I don’t know. I’m sure that Richard’s family knows though. I’m sure that he touched the world in his own way. I hope that we learn more about this little guy in the days to come. Because I need to know that a life was not lost without purpose. I need to know that this child will be remembered and that people will not forget what we lost yesterday.

I don’t know who would do such a thing. I’m not even going to venture a guess. It has happened and they will catch who is responsible for it. That…I am sure of. Rather that feed more hate with hate, can we remember the people who lost their lives yesterday? Richard in Boston and little Gavin. Can we keep them in our hearts and heal without spewing more violence?

I’m not saying not to be angry. Of course not. But, can we remember what really matters? Can we remember the kids and the friends, and the moms and dads, aunts and uncles, brothers and sisters, who will never see their loved one again. Can we honor their memory and be kind to one another? Can we stop the hatred and stop reacting with fear? Maybe just for a day. Do something nice for someone else. Do something in Gavin’s name. Do something with love rather than hate. How many times are we angry with someone and cannot WAIT to give them a piece of our mind? How many times do we take that same fire in our hearts and tell someone else that we love them, or appreciate them? How many times do we close our mouths to keep the vicious words from pouring forth? How many times do we open our hears and allow others to see our vulnerability. How many times do people see our love?

Never did words ring truer to me “Be the change that you want to see in the world.”

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Mombot Commands

9 Apr

I feel like I’m some kind of mombot running around performing preprogrammed tasks on autopilot and spewing out prerecorded commands to my husband and children. These mombot sentences can be heard several times throughout an average day in my house. I say them so often that they come out in a monotoned, digitalized voice that echo one after another.

Sometimes my recordings have a skip in them and I don’t even realized that I’ve repeated the same sentence 3 times in a row.

” Stop. Picking. Your. Nose. Stop. Picking. Your. Nose. St-st-st-o-o-o-p…P-P-P-Picking. Your. Nose…What’s. That. Smell. What’s. That. Smell. Wh-Wh-What’s. That. Smell…”

And I wonder why my children tune me out?

Here are the top 20 commands and questions that are programmed to loop throughout my day.

1. What’s that smell?
2. Stop picking your nose.
3. Go potty.
4. Eat your dinner.
5. Stop whining.
6. Stop fighting.
7. Stop yelling.
8. What’s that smell? 🙂
9. Is that poop?
10. Is that a booger?
11. Why are you crying?
12. Don’t put that in your mouth.
13. Don’t put that up your nose.
14. Go to bed.
15. Stay in your bed.
16. Go back to bed.
17. No, we can’t buy that.
18. Put your toys away.
19. I love you.
20. Did you fart?

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A letter to someone I love

8 Apr

Dear friend,

I have known you for what seems like forever. We grew up together, raced cars across my kitchen floor, played in my dads’ old flat-bottomed boat parked alongside my house and rode our bikes far past the mail boxes where we were forbidden to go. You watched me dance and swim. I watched you wrestle and play T-ball. You watched me struggle through my first back surgery in middle school and saw me cry when kids made fun of me. I watched you struggle through elementary school and saw you cry when kids made fun of you because you were just so incredibly smart and misunderstood. You watched me drive away to college and I watched your face dip in the sunlight. I saw your loneliness play shadows across your face as you watched your closest friend and constant ally drive off.

After that afternoon, things changed didn’t they? I was no longer there to protect you and you were no longer there to comfort me. We had been separated by miles and miles of fields and desert. I made new friends. I didn’t call you. I never forgot about you, but I forgot how much you were like me. I forgot how much we needed each other. I forgot about our summer walks and our midnight secretes when I came home to visit. I forgot to call you when the summer ended and I forgot to continue our friendship during the long winter months.

How could I forget?

Things got hard for you at home. Your parents divorced and you got lost in the shuffle. You were left to fend for yourself and grew up too quickly. You didn’t have me there to try to console you or set an example on how to cope with such a loss and a change. You didn’t have me there to try to help you.

I just wasn’t there was I?

You moved out on your own at 16 years old. You started drinking and making bad decisions. You got into trouble. You didn’t know how to live life yet. You were just a kid. I was an adult by that time. I should have been there to help lead you through the maze and the mess that had sprung up around you. I should have called. I should have told you that no matter how far away I was, I was always there for you. I thought you knew, but I should have told you.

I should have…

Still more years pass and things get even worse for you. I get late night drunk calls where you don’t know where you are and don’t know how you got there. You get beat up multiple times and wreck your cars. You are spiraling out of control. I want to help, but I don’t know how? I want to save you, but it begins to feel like you are beyond saving. Or maybe I just don’t want to deal with you anymore. Maybe I think that you are old enough now and should know better.

I was heartless wasn’t I?

Because the truth is…no one is beyond saving. No one deserves to just have people turn their backs on them. You didn’t deserve that, but that’s what I did.

And now things are better. You don’t drink as much, but you still drink too much. Now you don’t get into trouble, but you sit at home. Alone. You sit in your apartment with your loneliness and I sit in mine with my guilt. We don’t talk about it much do we? We don’t talk about those common traits that run through our veins.

I now find myself in a position to want to help you again. I want to help you, but you’re not that young kid anymore. You’re a man. A man who doesn’t really want to be helped. I have to respect that.

But here’s what I want to tell you if I could, or rather, what I will tell you when the time is right. I’m writing it now because I don’t want to overstep my bounds and you may or may not read this post. I hope that you do read it though. And if you do…well…we can talk about it. Or, if you don’t want to, you can just pretend like you never read it.

I have to say something because I hear too many stories of people saying nothing and then regretting it later when the unimaginable happens.

Life can be better friend. Life can be so much better.

You deserve the best. You deserve to be happy. You are an amazing person. One of the best and brightest that I have ever known. You don’t have to sit in your loneliness anymore. You don’t have to sit in unhappiness. There is a life waiting for you out there that you’ve never even imagined. You are a good person. You are a person capable of loving and being loved. You mean the world to me and I don’t want to spend another minute sitting in guilt over this and wondering what I should have done. I have done that enough.

I have been there. I have felt those feelings and wondered where the bottom was. After Oli was born I thought that I would never smile, laugh, or love the same again. But, I did. I did. And so can you. It just takes looking at everything from a different perspective. It takes not always trusting what goes on in your head as the truth. Sometimes our own minds are our biggest deceivers. Our biggest enemy lies inside us. It doesn’t have to stay that way. You can change it. But you must be willing to step outside what feels comfortable. You must be willing to do something different. It’s not always fun at first, but I promise you. It is worth it.

I love you.

You are worth it.

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This card pisses me off!

3 Apr
This little boy is in a wheelchair, but the bottom part of the picture got cut off.

This little boy is in a wheelchair, but the bottom part of the picture got cut off.

This post has been brewing for a while. I had to write a little something about this card, or cartoon, or blasphemy, whatever you want to call it. Let me just tell you, this picture PISSES ME OFF!

Aaahhhh! (Imagine me yelling at my computer screen) <—This is my frustration with this gem every time I see it float past my news feed on Facebook. And I have seen several versions of this one. I can't take it anymore! I can't keep my mouth closed any longer or I will start banging my head against the computer screen, rendering myself completely incapable of complaining about random things that are annoying me.

Really?

Your ONLY special need is to be loved?

Ummmm… no.

NO!!

No it’s not!

I’ll tell you why it makes me so mad.

It completely and totally minimizes all that MY special needs child has to go through to live in this world. My blind daughter who has to navigate around in the dark in a sighted world. My non-verbal child who has to try to be understood silently in a world full of language, subtle communication, and written words. My daughter has to survive and thrive in a world that doesn’t always understand or like people who are different. People who don’t have time for, or an understanding of, or compassion, or empathy, or a sense of humor, or many more things that are needed to understand, love, and appreciate a person with autism and other SPECIAL NEEDS.

It completely and totally minimizes all that WE have to go through as special needs parents. Her only special need is NOT just to be loved. It’s a whole hell of a lot more. All children need love. That one’s easy as a parent. I always love my kids. I may not like them very much sometimes (that’s a whole different post), but I ALWAYS love them.

She has specific special needs.

That’s why we call them special needs kids. Otherwise we would call them regular needs kids right? Or normal? No. Not normal. That’s a setting on the dryer. Vanilla? Plain? Average? Non special needs? Neuro typical? What? Kids. I have my kids. 3 of them. Or 3 children and one of them has special needs.

She has many more special needs other than just to be loved.

She has seizures, she takes a bunch of medicine, she doesn’t walk very well, she needs a walker at school, a walking wand, my hand. She’s not potty trained yet, she doesn’t talk, she can’t see, she has epic meltdowns, she doesn’t sleep well, she has stomach issues, she has to eat special food, she needs special therapies, special equipment, special people in her life who appreciate all that she CAN do and all that she is CAPABLE of doing in the future. She has enough doctors, teachers, specialists, therapists…ect., to populate a small country. Sometimes I feel like I am running my own country. I am a dictator here in Oliland.

This minimizes all of the people in her life who work so hard for her. If we just said “Oh. Her only special need is to be loved? Great. Job accomplished. Pass me an award. We did that in our first 5 minutes with her.”

It’s so much more than that!

It’s okay to acknowledge that our kids are different. That they need different ways to help them learn and live and love and grow to be amazing people.

And it REALLY pisses me off that they use the word only in front of the word special needs. Don’t even get me started on that one.

Only? Only!!

NO. Wrong.

You are NEVER allowed to use the word only and special need in the same sentence.

Never.
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