Tag Archives: strength

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…

Advertisements

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.

Total Mommy Meltdown

17 Feb

“There’s no bitch on earth like a mother frightened for her kids.”

― Stephen King

Finally after what seemed like hours of waiting in those little blue plastic chairs and watching cartoons on the Disney channel in the kids play room, the nurse called my name from the doorway.

“You can go back and see your daughter now. She’s awake, but we just got her into the recovery room. Normally I wait to bring families back until the kids have been there a little while, but since you work here I made an exception.”

I thanked her profusely for letting me go back early, but then was wishing she had waited a little bit longer as I rounded the corner and could hear Oli screaming at the top of her lungs from the end of the room.

I quickened my pace to get to her bedside and then looked at the recovery room nurse as she straightened out cords and tried to get her connected to the monitors.

“Aren’t you going to give her some pain medication?” I ask the obvious question when ones child has had surgery and then is screaming like they are still slicing off some major body part.

“Yes I’ll get her something in a minute.”

In a minute? Can’t you hear her pain? This purple color is not the normal hue of my daughter’s face.

I know what it’s like to be the nurse and have anxious parents breathing down my neck, but come on lady. I understand that you are busy and it is obviously important that you straighten out these cords (for some reason unknown to me), but give her something. I think she might be dying.

She finally untangles the last knot in the stream of medical cords and saunters off to get Oli pain medication.

By the time she came back I don’t think I had ever seen Oli quite the color that her face was now. I had no idea, until that moment, that human skin could turn that color. Her face had a kind of red, purplish tint that only the truly pissed off baby can become.

Now I am quite familiar with it. Now I know that when Oli turns that color I better get the hell out of her way in about 10 seconds because she may spontaneously combust. Or try to bite, scratch or beat me to death. Good thing my peanut is only 40lbs soaking wet and has yet to actually hurt me. ( She is usually very sweet. I promise… Except when she’s not. )

The nurse gave her some medicine and Oli eventually quieted down and went to sleep.

“This is normal. Sometimes children have that kind of reaction to the anesthesia. She should be better after a little while.” The obsessive compulsive nurse tells me.

“Okay.” I am thinking yes, I realize that, but it does not give me any comfort because I am watching my baby have a total and complete meltdown and therefore am well on my way to total meltdown phase myself. Watching her scream louder than I have ever heard her scream does not in any way feel “normal” to me.

However, thank you for trying to reassure me.

I don’t feel any better.

OMG!! What Did You Stick In Her Eyes!!

5 Feb

“No one is more insufferable than he who lacks basic courtesy.”
― Bryant McGill

HPIM1905

Although talking with these moms helped me tremendously, no one could have prepared me for the calamities of conformer therapy. I described the evaluation as being “awful” so to find a word describing peg conformers is difficult.

Horrendous, horrific, saddening, a catastrophic emotional disaster for an already emotional mother walking a very fine line between a healthy dose of hope and normalicy and a very unhealthy obsession pretending what if…

Peg conformer therapy walked me through new trials and tribulations and reminded me frequently that I did not possess thick skin.

These conformers were not pretty.

It looked like I had shoved little glass sticks in my baby’s eyes.

HPIM1907<a

"What did you stick in her eyes?" I actually had someone say these words to me.

"OMG! What did you stick in her eyes? Poor baby!"

As she clutches her chest and looks at me like she is about to call child protective services.

“Nothing! Nothing. I didn't put those in her eyes. Well, technically I did I guess, but only to help her.”

I start spouting off unsolicited information about her eye condition. Letting this woman know that Oli was born without eyes and that I drive her to California every 3-4 weeks and actually pay a professional to put these ghastly things into her eyes.

I am giving her way too much information at this point and now she is looking at me like instead of calling CPS she is thinking of calling the local psych hospital.

Well, serves you right lady! Don't say things like that to me. I'm sensitive!

Who says things like that to people anyway? I would never…

I was taught very young "Do unto others as you would have others do unto you". Thank you Mr. Snell circa 1985-1990. He was my elementary school principle and always closed the morning announcements with that lesson. I frequently hear that phrase repeated in my head in Mr. Snell's deep friendly voice. More frequently now that Oli has been with me.

As for spouting off unsolicited information about Oli, I still do this.

I'm going to make her a T-shirt that says "I'm just fine, but my mommy has issues!"

What did I do before Facebook?

4 Feb

“Friendship is born at that moment when one person says to another: “What! You too? I thought I was the only one.”

― C.S. Lewis

As I struggled to understand what the doctors were telling me, looking up every unfamiliar word, phrase, and condition, I was also furiously searching the Internet for other families who had kids with Oli’s condition.

There had to be more of us out there! Where were they? This was pre-facebook when it was not as easy to find people or support.

Finally I stumbled across a Yahoo online support group for families of anophthalmic/microphthalmic children. I submitted a request to join the group explaining that I had a one month old daughter with the condition.

I was silently begging this woman on the other side of the country….

Please, please accept me. Please tell me that you can help and that you understand.

I received an email the next day telling me to follow the link to the online forum. I waited until everyone in the house was sleeping before I went back online.

With the darkness of the house surrounding me I was looking into a new light, a new hope via my small computer screen.

I clicked on the link and walked into a whole new world. A world in which my child was no longer a small minority with a strange condition. A place where I was no longer just one mom alone on this foreign voyage. I had found the hope and the sense of community that I had been looking for.

I read through numerous conversation links and looked at handfuls of photographs of children who looked like my Oli. Beautiful children with positive and inspirational parents who told me not to be discouraged. They told me that they too lived my story. My life, her life, her future was not to be without hope. I could be myself with them. I could be angry, express my grief, my sense of loss. I could tell them about the strange looks that people gave my daughter. I could tell them how annoyed I was when people thought Oli was sleeping because she couldn’t really open her eyes. They understood because they too had the same experiences.

They knew me and they knew my struggles. I never had to pretend with these women. In the months to come I clung to my computer screen in the darkness and welcomed that light. I asked many questions and always received honest and compassionate answers. I found friendship in a most unlikely place. With women I would never meet. Most of them have never heard the sound of my voice, invited me over for coffee or out to lunch. Most of them were just names on the computer screen. But, those women knew me in those early days. They knew me better than some of my closest friends because I told them how I really felt.

I never told them that I was fine.

Growing up with Oli

4 Feb

IMG_1076“You are here in order to enable the world to live more amply, with greater vision, with a finer spirit of hope and achievement. You are here to enrich the world.”
― Woodrow Wilson

I have often wondered what it is like to be a sibling of a child with a disability. I know it’s an adjustment for any child when a new baby is brought into the house. But, what about the child whose life is forever changed beyond just having another little person to live with. It is so much more than parents now being more preoccupied with feeding routines, frequent diaper changes and crying episodes. And it’s more than just knowing that you now have to share mommy and daddy’s attention with a new sister when, well lets face it, you probably weren’t all that thrilled about her joining you. Especially since you were an only child up until now.

Your life changes because now life is riding in the car for hours and then sitting in little rooms with crappy toys and being told to “be quiet” while you try to wait patiently. It’s waiting in these rooms several times a week when all you really want to do is go back home and play with your toys and watch the Cars movie…again. It’s sensing the atmosphere change in your house and feeling the weight of a sadness that you don’t understand but, seems to have followed your sister home from the hospital. The weight that seems to intensify after waiting in another one of those little rooms.

As you get older you start to notice that your sister, who you have waited to play with since she was born, never seems to get old enough to play like you. She doesn’t sit up very well when she does learn to sit up and then she can’t see when you try to show her your newest Lightening McQueen car or your new Hot Wheels race track. Mommy tells you to put your toys in her hands to show her things, but frankly this doesn’t make sense either because then she only puts your new toy in her mouth and ruins it with slobber. She never learns to move around the house which means mommy has to carry her every where. The words “Oli just needs more help” are lost on you when you just want to be picked up and carried around like before. You love your sister but, just don’t understand her. You ask questions and want to know why she is so different than you but, mommy’s explanations that God made her different don’t make sense. Why can’t the doctors just make her better. She is obviously sick and this is what doctors do. Why doesn’t she ever get any better? Why do they keep taking her to the doctor if they don’t fix her?

As you grow and change, learn your letters, learn to count and tie you shoes you try to show your sister so she can learn too. But, your attempts are to no avail and she doesn’t seem to get it. She won’t talk to you and now you are drifting farther and farther apart. She starts to do strange things like flap her arms, hum loudly and shake her head. You try to play like her to connect with her in some way but, what seems to amuse her is just boring to you.

You never give up though. You never give up trying to form that connection with her.

She is your sister despite your differences. Mommy and Daddy have always taught you to love her and help her and that is exactly what you do. Not so much out of a feeling of obligation but, because that is just who you are.

Kekoa you are such a special little boy. I love that you just love her and even though it’s been 5 years since everything in your life changed, it has never dampened your spirit or your love of your family and life. Please keep your kind heart and don’t pay any attention to people who may try to lead you down a different path.

You, my son, are going to change the world.

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.

As long as nothing else is wrong…

29 Jan

“Prayer is not asking. It is a longing of the soul. It is daily admission of one’s weakness. It is better in prayer to have a heart without words than words without a heart.”

― Mahatma Gandhi

As we left the Nevada Blind Children’s Foundation that day I felt a little less alone. I finally met someone who knew what microphthalmia was. I still didn’t know what this would mean to my daughter but, I began to have that tiny seed of hope again.

The woman from the foundation told me that even though her son had bilateral microphthalmia and the doctors told them that he would be totally blind, he was actually able to see a little bit of red light. So maybe that was a possibility for Oli. Maybe she wouldn’t live in complete and total darkness. Maybe if I began to pray hard enough she would be given the gift of having some kind of light perception.

I began to once again direct my prayers toward Oliana having vision.

I didn’t realize then, that praying for someone to be given something, is not really how the whole prayer thing works. Although I was praying for her to have some sight, part of me was really praying for an easier life for myself. If she could see something, anything really, it would probably make this whole thing easier.

If she could see something she wouldn’t be among the small percentage of people who are totally blind. That small percentage that I had read about, many of whom are illiterate and unemployed. And if she wasn’t completely blind, I could probably still force her to fit into my little box of perfection.

As long as nothing else was wrong.

Many times I also prayed “God if she is going to be blind, let her just be blind. Please don’t let anything else be wrong.”

Mom…my baby is blind.

26 Jan

“I cannot forget my mother. She is my bridge. When I needed to get across, she steadied herself long enough for me to run across safely.” -Renita Weems

I think the hardest phone call I have ever had to make was the one I made to my mother, telling her that Oli was blind. I don’t even remember the details of that conversation but, I remember thinking…

I can’t believe I’m telling her this.

I can’t believe that I have to tell her that I will not be able to give her granddaughter the kind of life that she gave me.

My mom LOVES her grandchildren! ( Notice the capitalization and exclamation mark. This means that sometimes I think she loves them more than me.)

I can’t even imagine what she was thinking when I whispered those 5 words into the phone that day.

Mom, my baby is blind.

I could hardly even speak the words. I didn’t want to speak them. If I said those words to someone outside my hospital room, that would solidify it. That would make it real. I didn’t want it to be real.

I was crying uncontrollably and I just wanted my mom to do what she always does when I am hurting.

I wanted her to make it go away.

I wanted her to stand up for me, yell at someone for me, tell me how unfair this all was.

I wanted her to say that she would fix this for me.

But, she couldn’t make it go away this time.

This is the one time my mom didn’t offer to fix it for me.

She just cried with me. She told me how sorry she was that this had happened.

And then she told me that it would be hard but, I would get through it.

My mom’s heart was broken that day.

She loves me and my children like her life depends on it and I know that if she could have bargained with the devil for Oli’s eyesight she would have done it. If she could have fixed it somehow, she would have. She would have fixed it so that I didn’t have to feel this unbearable heartache.

But she didn’t offer me a lie that day.

She didn’t offer to do something that she knew she could never make happen.

Moms can’t always fix things for their children, even when their hearts are shattering to pieces before them.

My mom showed me that day how hard it really is to be a mother. I love her immensely for the things that she unknowingly taught me that day. Things that I now know are the honest gifts of a mother to a child.

She has never lied to me when she knows something is going to hurt.

Never promised me things she knew I will never have.

And she has never tried to fix something for me when it is not truly broken.

8 things I wish I would have known when Oli was born.

26 Jan

“None of us is as smart as all of us.” Eric Schmidt

1. I am my child’s parent 1st.

I am not her therapist, or teacher. I am definitely not her drill sergeant. It’s okay to just be her mom sometimes. Of course, I still have to work with her at home. But, I no longer have that tremendous amount of guilt when I just cuddle her instead of doing physical therapy exercises. I don’t feel guilty when I carry her up the stairs once in a while instead of forcing her to walk up them when she doesn’t want to.

A woman from the Texas School for the Blind and Visually Impaired told me this when Oli was 4 years old. It was the first time anyone ever gave me permission to “just be her mom”. I will never forget that because it was the gift that I had been aching to receive since the day she was born.

2. Think about today.

Boy, does this one catch me up sometimes… I don’t need to worry about the things that Oli will or won’t do 10 years from now. (I really like to do this!) It just weighs me down when I do. I have realized that she can do what she can do today and that is just fine. I really can’t tell you what her future will look like but, for right now, what she is doing is perfect.

3. Don’t be afraid to be Donald Trump

If a doctor talks about Oli while she’s in the room like she is not even there, I fire them.

If a doctor is not compassionate and does not realize the he/she is treating my whole family and not just my little girl, I fire them.

If a doctor or therapist seems annoyed that my 2 year old is crying and my 7 year old keeps interrupting because he wants me to look at his latest accomplishment on his Nintendo DS game, I fire them.

These doctors and therapists have no idea how many times I have dragged my other children to these appointments. How many hours of their short lives have been spent in waiting rooms and in the car driving to different appointments. If they cannot respect the fact that my other children are also affected by Oli’s disabilities, we find someone who does.

4. Google is my friend.

5. Laughter is an even better friend.

6. I probably have Post Traumatic Stress

Oli’s wonderful pediatrician in Las Vegas, Dr. Hyun, told Seth and I this while we were sitting in her office one day.

It could have been our red swollen eyes, lack of matching clothes,all around disheveled appearance and the “Holy shit! What just happened?” look on our faces that tipped her off.

It was the first validation I received that all the craziness in my head had a diagnosis.

7. Functional not Perfect

So many therapists would spend hours trying to get Oli to do things perfectly. She was never successful because the reality is, no child does things perfectly when they are just learning to do something. Special needs or not.

Oli’s new physical therapist, Cathrine, was working on trying to get Oli to stand up from the middle of the floor. (We had been working on this for a couple of years with different therapists.)

She told me on her first visit, “I don’t care how she does it. I just want her to be able to do it. It doesn’t have to look pretty.”

And guess what….Oli did it!

8. Special = Expensive

Having a special needs child is very very expensive. I had to claim bankruptcy when Oli was 6 months old because of the mounting medical bills, co-pays, and things our insurance didn’t cover.

Very Special = Very expensive

(It’s okay. I’ll still take very special, even though it means I’m broke all the time.)

thecrumbdiaries

Logan is challenged but not limited, and he is living his life like a boss. I am just lucky enough to be along for the ride.

Mommy Got Her Groove Back

How a new mom, and wife does parenting and daily life.

Lessons from my daughter

Although all doctors agreed she would do nothing.....

I'm fine, but my Mommy has issues!

Raising a daughter with special needs.

Living on the Spectrum: The Connor Chronicles

Our family's adventures in the world of ADHD and Autism.

Parenting And Stuff

Not a "how to be a great parent" blog

don of all trades

Master of none...

The Third Glance

A peek into my (Autistic) mind

One Stitch At A Time

Making my way back in time.

Disability Watchdog

Exposing Injustices for Vulnerable People

My thoughts on a page.

Living, Laughing, Loving, Loathing.

It is Well...with my Soul

Sure, my hands are full. So is my HEART!

Chopping Potatoes

And other metaphors for motherhood

This is the Corner We Pee In

Bulletins from the Parenting Trenches...

clotildajamcracker

The wacky stories of a crazy lady.

This is the place

visiting places where writers were born, lived, loved & are buried.

motherslittlesteps.co.uk/

Motherhood and Country-Coastal Living

My Dance in the Rain

The journey of my life, my path to redefine myself and a special little girl with Cri du Chat Syndrome and Primary Ciliary Dyskenisia who changed it all.

Prego and the Loon

Pregnant and Dealing With Domestic Violence

%d bloggers like this: