Tag Archives: hope

My heart is a flood of tears.

6 Feb

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

The air left my lungs.

My heart dropped to the floor.

My world stood still, and silent, and dark.

Again.

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

Her pixie face is soft and caring.

She asks the question with compassion in her voice.

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

Autism.

Kekoa?

Autism.

No.

Wait.

Maybe?

Wait.

No.

No.

Maybe?

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

That brief moment.

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

My life is made up of these little moments.

I hadn’t considered it at all.

Until now.

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

Now I am seeing him.

The obsessions.

The social awkwardness.

The demeanor.

The sound sensitivity.

Maybe.

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

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

Should come from this psychiatrist.

She’s fantastic!

There’s no judgment.

There’s no doom and gloom.

There’s only presence.

“I don’t know. Do you think?”

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

Predicting what a diagnosis of autism would mean for him.

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

She says it bluntly.

She says it without complete conviction.

She is throwing out another possibility to explore.

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

If I want to.

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

After he had changed schools.

After he began being bullied at school.

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

After we got divorced.

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

After he lost all of his joy and happiness.

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

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

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

Depression.

Anxiety.

And now possibly autism.

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

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

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

I was so sad.

I was so angry.

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

Why? Why my child?

And in an instant I remembered the answer.

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

Why not my child?

We are not special here.

We are not invisible, indestructible, or impenetrable.

This is life.

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

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

What is.

I know what to do with this.

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

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

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

And then I will move on.

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

Which is to help my son.

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

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.”

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.

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.

Click to play this Smilebox slideshow
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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…

Will she forgive me?

30 Jan

“The truth is, unless you let go, unless you forgive yourself, unless you forgive the situation, unless you realize that the situation is over, you cannot move forward.”

― Steve Maraboli, Life, the Truth, and Being Free

I wasted so much time at the beginning of Oliana’s life wishing and praying that things would change.

I wished that we could find the right doctor for her. I wished that she had been born without a disability. I wished it was easier.

I prayed that God would let her have some vision and that nothing else was wrong with her. I prayed that she would not be significantly delayed.

I prayed that I could just accept her as she was.

One by one, as these wishes failed to come true and my prayers were left unanswered, I became angry.
I was angry at my friends and family for not understanding what I was going through. I was angry at the doctors for continuing to give me bad news. I was angry at God for thinking that I could handle this.

I was so angry at God.

What did I do to deserve this?

I felt like I was being punished.

Much later I realized that I was feeling sorry for myself. I was being selfish and turning Oliana’s disability around and making it about me.

The angrier I became, the more I began to detach myself. I started pushing everyone who cared about me away.

I would often think, why can’t they just understand how hard this is?

As we continued to receive disheartening news about Oliana’s condition, I spiraled deeper and deeper into a vortex of anger and despair.

The things I felt during those dark days are very hard for me to admit to now. I wanted to be okay with who she was back then. But the truth is, I just wasn’t.

I know that I am going to have a very hard time as my children grow older and want to read this. I never want them to look at me and think that I didn’t love Oli because I wanted to change her. These two things seem like they can’t co-exist but, in my life they did. I did want to change her. I also loved her. It just wasn’t easy.

As I continue to write this, the hardest questions of all are:

How will I read this to Oli?

Will she understand?

Will she forgive me?

She asked if she could see my baby.

29 Jan

“When someone is crying, of course, the noble thing to do is to comfort them. But if someone is trying to hide their tears, it may also be noble to pretend you do not notice them.”

― Lemony Snicket, Horseradish: Bitter Truths You Can’t Avoid

Seth and I decided to go to the Nevada Blind Children’s Foundation open house. I was nervous about taking Oli out anywhere besides the doctor. I didn’t want people staring at her or asking me questions about her eyes. I didn’t want to have to start explaining my baby to people. She was only a week old.

We had to make the trip though. We didn’t have any other place to go. I needed to talk to another parent about what it was like to raise a blind child.

The open house was in Las Vegas. I tried to prepare myself on the hour long drive there. I didn’t want a lot of people looking at her or touching her. She was so small and I felt that fierce need to protect her like I had my son. I brought my baby sling to put her in.

I brought it because I knew that it was the best way to hide her from the world.

If I could only hide her for a little while longer… maybe eventually I would be ready for the world to meet her. Right now, I just wanted to get in, ask my questions, learn the secrete language or hand shake or whatever it was that I needed to learn in order to live this life and function normally.

I really thought that these people would give me the magical keys to my new life. I thought they would open the door for me. After all I was now part of their club. I had a child that was blind. I thought they would just sit me down and explain it all.

It didn’t happen that way.

They were very nice. They told me their son was 3 and had bilateral microphthalmia. I remember that I really wanted to meet him. I wanted to be able to picture what Oli would be like in 3 years. I wanted to see what his eyes looked like. I thought that because Oli had the same condition as him they would be very similar. I thought all kids with the same diagnosis were similar. Obviously there was so much that I didn’t know. I was disappointed when they told me that their son wasn’t there.

The mother of the little boy approached me.

“How are you doing?” she asks me.

Of course I replied, “I’m fine. Thank you.”

“Can I see her?” she startles me with her question.

Oh my God. The moment of truth. Someone wanted to look at her. At least this was someone who was familiar with her condition. I felt a tiny bit more secure as I pulled the fabric back from her face. She peaked inside the sling.

“She’s beautiful. Congratulations.” she smiles.

Congratulations?

I don’t think anyone had said those words since we found out about her eyes.

As tears welled up in my eyes the next words out of my mouth were spoken with complete honesty and appreciation for that one word. Congratulations.

“Thank you.”

Thank you for reminding me that she was a baby. She was my baby despite her disabilities. I should be proud of her and people should not be afraid to congratulate me.

That word was spoken by a woman who, through her own experience, knew exactly what I needed to hear. She could sense that I was frightened about what people would say. Frightened by the way people might look at her.

She knew what I needed and that is exactly what she gave me at the moment when I needed it most.

Comfort.

Fix her

21 Jan

“Once you had put the pieces back together, even though you may look intact, you were never quite the same as you’d been before the fall.” -Jodi Picoult

I used to get so mad when people would try to talk to me about “fixing” her.

They would say things like “You never know what the future holds. Someday they will invent a way for her to see”. I didn’t want to hear any of it. I knew they were just trying to give me hope and trying to get me to see the rainbow at the end of all this but, I couldn’t hear it.

I again, being a –worst-case-scenario- girl, wanted to make myself believe that she would never be able to see. Secretly, this was only part of me.

Secretly, I wanted to have hope.

Let’s face it. I am a nurse. I wanted them to give her some kind of magical pill or hook her up to some kind of machine and fix her. I just wanted so desperately to wake up one morning to a baby with vision. I wanted someone to tell me what her future looked like and that she would be okay.

I had that tiny seed of hope for a little while. Until one day I didn’t.

Until one day the growing list of things wrong with her outweighed any hope I had of her living a “normal” life and the disappointment became too much. Until one day, another doctor, another specialist, another therapist unknowingly squashed that little seed of hope like an insect they didn’t even notice. They never noticed that little seed of hope that I had for her future.

Let’s talk about all of those specialists.

Let’s talk about how to approach new parents of a special needs child. First of all, if you’re the pediatrician delivering devastating news to parents about their newborn, you should probably wait until both parents are present in the room. Not tell the new, already hormonal mommy by herself in the hospital room. You are changing somebodies life forever. You need to be compassionate and gentle. You need to have some kind of emotion.

Also, sometimes parents need a break in between all of the bad news. You can’t just sit parents down with a newborn and give them a 4 page list of everything they think, might be wrong with her. I don’t know. Break it up a little. Give us a coffee break. Offer us some pastries. By this I DO NOT mean send us back into your tiny overcrowded waiting room where we have already been sitting for the past 2 hours. Your waiting room is not that cozy and I do not enjoy your uncomfortable chairs or your rude receptionist. Obviously I’m not exactly sure how this should be approached with new parents. But, I do know this. They way it was done with my husband and I wasn’t conducive to acceptance.

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