Tag Archives: disability

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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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…

My Special Needs Mother Hat

18 Feb

“A woman is like a tea bag; you never know how strong it is until it’s in hot water.”
― Eleanor Roosevelt

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

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

When I got this hat it was WAY too big. It fell off all of the time. Sometimes it just blew right off my head. In the beginning I forgot that I had it and a big gust of wind would come along and POOF! Gone. I would have to go chasing it down the street. Sometimes I threw it to the floor in a moment of rage, frustration, or grief. And sometimes I just tried to leave it on the counter at home. I tried to pretend that I didn’t have it and that it wasn’t sitting there waiting to adorn my head like a 1000lb weight. It was extremely heavy. It had all kinds of straps, buckles, and ties attached to it that I couldn’t figure out. It had random flowers on it with names that I couldn’t pronounce. It was uncomfortable and became worn out looking. Rips and tears began to decorate the sides and no matter how hard I tried to stitch it up, my stitching never fixed the holes. They were loose, crooked and simply came apart by an unexpected tug in the wrong way. The whole hat would just fall apart. I would carry my hat in pieces back home and painstakingly try to put it all back together. At first it seemed destined to be big, ugly, uncomfortable, and prone to making me feel like an outsider. It seemed nobody had a hat that looked like mine.

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

Slowly I began to notice new things about this hat that I hated at first. I was learning to pronounce the names of the flowers on it and figuring out the buckles and straps. It wasn’t so big anymore and no longer blew unexpectedly off my head. It began to fit better as each day I grew a little more confident in my role. Every once in a while I still throw it to the floor, but now my reasons are different. It still gets ripped and torn, but I am learning to sew it back up and now my stitches hold it together. It doesn’t fall apart so easily and my stitches are straighter and stronger. I’ve learned to love each and every rip, tear, crease, and stain on my hat because each one has a story. A moment in time and a memory of where I have been and what I have gone through. It isn’t so uncomfortable now and it doesn’t make me feel like an outsider. Now it makes me feel like part of a group. A group of mothers with special hats and special roles that we love and feel honored to have. Now I’m not ashamed of my hat and I never try to forget it on the counter. I walk out of my house each day with my head held up high. Proud to show off my journey with my special needs mother hat.

Yes. Sometimes I do hide in closets.

3 Feb

images (7)
I find it so odd that when I first meet people and tell them that I have a special needs child their first response is either A: God gave her to you for a reason. Or B. You must be a wonderful mother.

I already explained why I find A hard to comprehend when I described me and my experience when Kekoa was born. And B, how in the hell does having a special needs child = being a good mom? I am a wonderful mom, but it is not because I have a child with disabilities.

Is it because I love, take care of, feed, water, and provide for her? Because I’ll tell you, I also do those things for my cat.

Is it because I haven’t run for my life when it gets to be too much or locked myself in a closet somewhere crying and banging my head against the wall? Because I have found myself in many closets. Just not for very long. And as for running away, I did take a 30 day hiatus one time. I just came back and I came back a better mother.

imagesCAPB40ZS

Maybe it’s because a lot of people could just never imagine having a disabled child? I understand that. But you can’t meet me for 5 minutes, learn that I have Oli and then jump to the conclusion that I am amazing.

Maybe I just unknowingly emit good-mother-vibes?

Or maybe it’s just a pity statement and they are really just looking at me like “Boy am I glad that I’m not you!”

I understand that too.

Whatever the reason, special needs mom does not in any way equal good mom. There are many kids, disabled and not, living horrendous lives that I probably can’t even fathom. And there are plenty of kids out there in the world with disabilities that are homeless, in orphanages, shelters, institutions, and foster care with mothers who have left for various reasons. Maybe they were young, in a bad relationship, had mental health issues, or just couldn’t handle it. And some of them may in fact be horrible mothers.

But many of them are probably not. Maybe they did the best they could.

For some reason it just irks me to no end when I hear about a child with disabilities not living with his parents and people automatically jumping to the conclusion that their mother didn’t love them or that she must have been a monster. Maybe she was but, maybe she wasn’t.

Just like me loving Oli and raising her does not equal wonderful mom. Giving up a child with disabilities does not always equal bad mom either.

Back to this whole, “You must be a great mom” business, I realize that people just don’t know what to say. But, I’m not looking to hear anything profound.

I tell people about Oli because I want the people who meet me to know part of what makes me, me.

And I feel the need to give a disclaimer because they might see me again in the future crying and looking for the nearest closet.

Oli is just a little quirky.

3 Feb

imagesCACDUX03
“Sometimes you just need to look at life from a different perspective.” -Unknown

As the first few days of Oli’s life turned into the first few weeks, results began to trickle in from Oliana’s many tests. And I do mean trickle. Sometimes it seemed to take forever to hear anything back. I guess I can sum up what most of those tests found by saying, they were pretty normal, except… not completely.

My sweet Oli is just kind of quirky.

The cardiologist said that her echo was normal except for a few things. Oli’s first quirk. The right ventricle in her heart was a little larger than normal and there was a small hole in her heart that should have closed when she was born, except that it didn’t. It was very minor.

She had a repeat pelvic ultrasound to check her kidneys. They still had extra fluid in them and then the doctor threw in a bonus quirk. She had 2 uterus’s.

What? I’d never heard of that either.

I was starting to think that I should have paid more attention in nursing school.

Of course, as soon as I got home I Googled “two uteruses”.

Have I mentioned how much I love Google?

Apparently this is not all that uncommon.

Google told me that the there were two draw backs.

Sometimes when a woman with two uterus’s gets pregnant the baby can be born preterm because the uterus’s do not stretch to the size of one normal uterus. The baby runs out of room.

The second draw back was that it is possible for a woman to get pregnant at two different times and have pseudo twins. A baby in each uterus.

Well, Google. I’d say those are pretty big drawbacks!!!

A trip to the endocrinologist revealed that her pituitary labs were normal, except her pituitary gland did not look normal on the MRI. He said that her posterior pituitary gland was ectopic. Which just means that it wasn’t in the spot that it was supposed to be. Oli has had a few more MRI’s since then and I have heard many different opinions about how her pituitary looks.

Is it moving? Changing? Mutating? I have no idea.

I don’t think anyone really has a definitive answer as to what is wrong with the appearance of that gland.

I told you she was quirky.

The rest of the MRI results were normal except….(Yep. You guessed it) for a few things.

Apparently she did not have an optic chiasm or a pineal gland.

Are those important?

Here is what Google tells me about these VERY important pieces of her body.

1543,Visalius'OpticChiasma (2)
The optic chiasm or optic chiasma (Greek χίασμα, “crossing”, from the Greek χιάζω ‘to mark with an X’, after the Greek letter ‘Χ’, chi) is the part of the brain where the optic nerves (CN II) partially cross. The optic chiasm is located at the bottom of the brain immediately below the hypothalamus.

The images on the nasal sides of each retina cross over to the opposite side of the brain via the optic nerve at the optic chiasm. The temporal images, on the other hand, stay on the same side. This allows the images from either side of the field from both eyes to be transmitted to the appropriate side of the brain, combining the sides together. This allows for parts of both eyes that attend to the right visual field to be processed in the left visual system in the brain, and vice versa. This is linked to skin sensation which also reaches the opposite side of the body, after reaching the diencephalon (rear forebrain). This decussation (crossing) is an adaptive feature of frontally oriented eyes and therefore having binocular vision. (Some animals, with laterally positioned eyes, have little binocular vision, so there is a more complete crossover of visual signals.)

Beyond the optic chiasm, with crossed and uncrossed fibers, the optic nerves become optic tracts. The signals are passed on to the lateral geniculate body, in turn giving them to the occipital cortex (the outer matter of the rear brain).[2]

250px-Illu_pituitary_pineal_glandsThe pineal gland (also called the pineal body, epiphysis cerebri, epiphysis, conarium or the “third eye”) is a small endocrine gland in the vertebrate brain. It produces the serotonin derivative melatonin, a hormone that affects the modulation of wake/sleep patterns and seasonal functions.[1][2] Its shape resembles a tiny pine cone (hence its name), and it is located near the centre of the brain, between the two hemispheres, tucked in a groove where the two rounded thalamic bodies join.

The MRI also showed that her optic nerves are so extremely small that they can hardly be visualized. In a few years, they weren’t visualized at all.

And that folks is one reason why my girl does not see and a BIG reason why she does not sleep!

You’re probably not a special needs parent if….

2 Feb

1. You have money.

2. You drive a small car.

3. You drive a nice car.

4. You don’t know what IEP stands for.

5. You don’t have a small panic attack, cringe, or cry when you hear the word IEP.

6. You go out to eat at restaurants and stay longer than 20 minutes.

7. Going out to eat does not mean going through the drive through at McDonalds.

8. You regularly enjoy meals without someone spitting a mouthful of chewed mush all over your shirt and then clapping and laughing. This is not done by your baby.

9. Your purse doesn’t weigh 5,000lbs and include things like emergency medication syringes, extra-large diapers, special snacks, multiple packs of boogie wipes, or weird toys.

10. Your wallet isn’t bursting with business cards from doctors, specialists, therapy places, schools, and support groups.

11. You never get emails titled “Sale! Feeding chair only 1 million dollars (regularly priced at 5 million)”

12. You don’t schedule your day based on what kind of mood your child is in.

13. You can go shopping with your children and never end up back in the car crying.

14. You’ve probably never been bitten, scratched, spit on pooped on, peed on, or thrown up on all in one day. Unless you’re a nurse.

15. Poop on the walls is DEFINITLY an emergency.

My booger awards.

30 Jan

“Sometimes crying or laughing are the only options left, and laughing feels better right now.”

― Veronica Roth, Divergent

So since I’ve recently been entered into the top 25 blog contestant on Circle of Moms (for my other blog. I am in the process of transferring all of the content from there to here.) I have been reading some of the top blogs. Seriously, there is a reason why the number one blog on there has like 8 million votes. It is hilarious!! I have absolutely no chance when it comes to these women and their humor.

But, I still really appreciate everyone who has voted for me. Keep voting!!! You never know, I could get 8 million votes too 🙂 Plus, I just like the thought of winning something other than the booger off my 2 year olds finger. Seriously…she presents it to me like an award. “Here mommy! Look what I have for you!” She hands it to me like it’s one of her prized possessions.

These mom blogs are about how funny it is raising kids. How, ultimately, you do get a little crazy and find yourself doing things that you never thought you’d do. Like responding “Thank you” when someone hands you a booger.

I find it interesting that there are not many funny blogs about raising a special needs child. Oh, they’re out there I’m sure and if you know of one please list it in the comments below or on facebook because I would love to read it.

I wonder if it is because no one wants to associate humor with special needs.

There is nothing funny about a child or an adult that has a disability.

And it’s really not funny in the beginning when you can’t even seem to drag yourself out of bed in the morning because the very thought of the weight now on your shoulders seems like it will crush you.

I don’t think I really truly laughed until about a year ago. I was so caught up in all that I couldn’t do and all that she wouldn’t do that I forgot to laugh and ultimately I forgot to live.

Now I see that those thoughts and sorrow were slowly killing me and if I kept on the path that I was on I was going to die a slow and agonizing death.

Now I see that I just took it all for granted and was so deeply entrenched in self pity that I couldn’t appreciate the wonderful life that I had been given.

Now I see that it is possible to move past all of those things and learn to live again and subsequently learn to laugh again.

I’ve missed that.

I’ve missed being able to laugh at myself.

It really can be funny.

Having children in and of itself is a funny journey, but having a child with special needs has it’s own unique humor. One of my friends on facebook, Jill, posts about the funny things her 6 year old daughter says.

Ella has anophthalmia and makes jokes about her blindness and prosthetic eyes. Her mom posts stories about the humor in their life. Like her whole family panicking in a power outage at night, but little Ella remaining calm and leading her younger brother to the bathroom in the darkness grumbling under her breath that she “doesn’t see what the big deal is?” I love stories like that!! (Jill, I hope you don’t mind me using you and Ella as an example.)

Yes, it can be sad sometimes, but it can also be hilarious and crazy in a good way.

Sometimes it’s okay to laugh and it’s okay to talk about the funny parts. I’m glad I realize that now and I’m glad that I remembered what it’s like to be funny.

Really all that I want to accomplish with this blog is to help the me’s from 5 years ago out there in the world stumbling along in pain trying to figure this whole mess out. If I can reach just one person who knows what I’m talking about and make them feel just a little bit less alone, then I have done the job that I set out to do.

Oh…and somehow writing about my craziness in all it’s glory amuses me.

If you want to share my blog and you feel that it may reach someone and help them, please share it. Or if you just like it and want to share it, please do.

It’s not about the amount of followers I get, or how many likes I get on Facebook or winning any awards (although all of those things are very nice and I do really appreciate them) (Vote for me!:)

It’s just about telling my story, healing through telling it, and maybe helping somebody else.

Isolation

27 Jan

“If isolation tempers the strong, it is the stumbling-block of the uncertain.” -Paul Cezanne

When Oliana was born we lived in a town called Pahrump, an hour outside of Las Vegas. We had moved there from Vegas only 5 months before her birth. I took my baby home to a house 1500 miles away from my mom, who lived in Iowa.

I had never really felt lonely before but, that day I began to realize how alone and completely isolated I was.

I just wanted my mom.

I have always been a very independent person but, right then, I just wanted her near me. I wanted her to hug me and tell me again that I was going to get through this. And that it really wasn’t as difficult as I imagined. Even though she had never raised a child with a disability, I wanted her advice on how to walk this difficult road that now lay before me. I had no idea even where to begin.

Going back to that house in Pahrump felt like being abandoned on a sinking ship.

There was no one around that I could use as a life raft when I began to feel like I was drowning.

There were no doctors or therapists for her in Pahrump. Oli’s nearest physician would be an hour away and I still didn’t know exactly what kind of medical complications she might suffer from.

I began to realize what a terrible mistake it had been to move to there.

I didn’t know back then, what living out there in isolation was going to do to me.

What did he just tell me?

22 Jan

imagesCATNWCFN

Seth left the next afternoon to go pick up my son Kekoa (he was 18 months old) from his Grandma’s house where he had been staying. The pediatrician, who was supposed to come and look at Oli in the morning, still had not shown up. A little while after Seth left, the doctor walked through the door.

“I’m just here to take a look at your baby.”

I sit up in the hospital bed anxiously awaiting his assurance that everything is fine. “Ok. I’m kind of worried about her eyes because she hasn’t opened them yet. I think they’re just swollen, you know because I had been in pre term labor awhile and I’m sure that stressed her out and probably caused some swelling, but I’m sure she’ll open them soon. Maybe later today or tomorrow. Do you think? I’m sure there’s nothing wrong. They’re just swollen. Right?”

He just looks at me like he’s mildly bored and somewhat irritated because I am rambling at this point. I tend to ramble and talk really fast when I’m nervous.

“Are you going to look at her eyes?” I ask. I am quickly losing patience with his non-committal attitude.

He is looking everywhere else besides her eyes. Her feet, legs, tummy, arms, nose, mouth. Taking his sweet time at it too, I must say. I just wanted to scream at him “TELL ME NOTHING IS WRONG WITH HER EYES YOU BIG JERK!!”

Finally he tries to open her eyes. Oli starts screaming her head off like he is trying to rip her eyelids apart. Which is essentially exactly what he was doing because they were literally fused together. After trying this for a minute he puts the blanket back over her, straightens up, looks at me and says,

“Well, I think she has either really small eyes, or no eyes at all and she will be completely blind. Microphthalmia is what it is called. Do you have any questions?”

My mouth is now gaping open, tears are pooling in my eyes, and I’m looking back at him with a mixture of astonishment and offence. Do I have any questions? Well let me see… I guess I have two. Where did you get your medical license and where do you live so I can come rip your heart out while you are sleeping. Like you just ripped out mine.

Did I have any questions? What a dumb question. Of course I had questions but, at that point I couldn’t even remember my own name let alone think of a way to put together a question out of the millions of thoughts racing through my head.

“I don’t know. Have you ever seen this before?”

“Once. 15 years ago. A little boy that had Fraisers Syndrome. We’ll have to check her kidneys. She might not have any kidneys.” He answers with a blank, emotionless expression.

Again I am staring at him with my mouth open. Did he just say what I think he said? No kidneys? That means death right? I mean, I am a nurse and I’m pretty sure no kidneys means death. Did he just tell me she might die?

“Ok then. I’ll order some tests and we’ll let you know.”

With that he promptly walked out of my hospital room leaving me alone with my new baby that I now thought might die.

Her eyes were closed

21 Jan

Life is what happens to you while you’re busy making other plans.” – John Lennon

 

 

Oliana entered this world on May 10, 2007 with her eyes closed.  I never got to look into my baby girls eyes and form that instant bond with a ‘Hey! I know you! You’re the one I’ve been loving since the day I peed on that stick!’ 

Her eyes were closed because they were fused shut. They had not developed.  Severe bilateral microphthalmia.  That’s what it says on all of her paperwork.  It probably should have been etched on her forehead for all the times we referred to her as having “it”.  This had become who she was to me and to people around her.  My baby with severe bilateral microphthalmia.  Somehow these 3 words would become as familiar rolling off my tongue as her first name.  Which is very very wrong.  But that’s what it was.  She had become not my new baby girl.  But my baby girl born blind.  Born with severe bilateral microphthalmia.  She had no eyes.  These words were repeated over and over in my head during the next few months.

 

The moment the doctor said blindness, the little blond haired, brown eyed girl I had been dreaming about for 9 months died.  She died and I didn’t know that I was allowed to grieve for her.  I thought I had to become this perfect mother of a special needs child.  I could not allow the outside world to know that I was hurting so terribly inside.  In place of the little girl I had lost was this tiny baby with blond peach fuzz on her head and no eyes.  A baby I didn’t think I was capable of taking care of, nor did I know if I wanted.  I knew I could never abandon her.- (gasp) What would the neighbors think?-  But I didn’t know if I would be able to love her like I loved my son.  Because she was different.  If she didn’t have eyes what else was wrong with her?  Was her little brain a mess too?  What if she never walked or talked or could eat on her own? What if she never went to college or got married.  Even more horrifying, what if I had to take care of her for the rest of my life?  No. They got it wrong.  It has to be wrong!  I never signed up for this.  I ordered the little cute blond girl with pigtails in her hair and brown eyes to match mine.  I remember the day I got married.  I signed a bunch of documents including a marriage certificate, a give-up-your-last-name-and-assume-your-husbands-identity- page, and I definitely signed the one where you check the box under, you will have a happy life with rainbows and butterflies raising 2.5 HEALTHY children.  Not a disability.  I DEFINITELY did NOT check that box!! They delivered the wrong baby girl.

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