My old lady, Gertrude

Tomorrow Oli has surgery…again. Every time she has to go through this I think, “For sure this is the last time. Surely she won’t need anything else done.”  I think it Every. Single. Time. And then we have to do something else. Something comes up that only can be done under anesthesia. 

Tomorrow’s surgery is no big deal.  I know that it’s no big deal. They will not be cutting into her. Many, many people have gone through MUCH worse with their children. I know that too.  Oli will only be having an ABR (hearing screen) done and possibly tubes put back in her ears.

But…I am terrified.

 I have this wicked old lady, Gertrude that lives in my mind.  (Wait….stay with me here.) She likes to whisper nasty, horrifying things in my ear.  Remember worst-case-scenario-girl from previous blog posts?  The one who is sure the power will fail during Oli’s surgery and her arm will end up falling off?  Gertrude tells me these things. “Yoo-Hoo! Shaaannoooon! What if the anesthesiologist is a drug addict and gives her WAY too much medication and she never wakes up?” This is not all that far-fetched. When I had my tonsils out as a child my doctor was an addict and really did give me too much anti-nausea medication. Fortunately it was just that and not too much sedation. (A few years after my surgery he ended up giving a pregnant mommy too much sedation and sadly, she died.)  I just couldn’t control my tongue for hours after surgery. 

What?

Yes it was very, very bizarre. It would pull back towards my throat and then hang out like a dog.  On the drive home my mom kept saying “Shannon. Stop that! It’s not funny.” I told her I couldn’t help it. After I finally convinced her that I wasn’t doing it on purpose she got kind of freaked out. (Hello! Her child had lost all voluntary control of her tongue!) She called the hospital and after looking at my chart the nurse realized that during surgery, I had been given WAY too much medication.  The sticking out tongue thing eventually went away after a few hours.  Thank God!!  What if I had to live the rest of my life like that?  What if I still had no control of my tongue?  Has that ever happened before? I should Google ‘permanent loss of voluntary tongue control’.

Then I start thinking, what if that happens to Oli?

No. I probably shouldn’t Google it.  I don’t want to know.

I’m just nervous. Nervous, nervous, nervous. 

I’m scared because they will be putting her to sleep (obviously that alone provides a whole crap load of things for that old lady to work with), but I’m also scared of the hearing screen results.  What if it’s NOT just fluid in her ears? What if that doesn’t explain why her eardrum isn’t moving? What if it’s something congenital?  What if she’s NEVER been able to hear well out of that ear?  I’ve spent her whole life providing a lot of information auditorily. What if I’ve been doing it all wrong? It would definitely explain a lot if it turns out that she really isn’t hearing well.

No matter what, I have to try and ignore the millions of bad scenarios that are racing through my head. (Shut up Gertrude!)  I have to put aside my own fear and step up for Oli.  And I have to just keep moving forward whatever the results of that test show.

"Don't dwell on what went wrong. Instead, focus on what to do next.  Spend your energies on moving forward toward finding the answer."  -Denis Waitley

An Amazing, Inspiring Blogger Award

I have been nominated for The Very Inspiring Blogger Award.  Really?  That’s pretty awesome! (I was going to say amazing. I guess I say it a lot.  I never realized until my 2yr old started saying that she thinks everything is amazing. I also learned that I say apparently a lot. I probably shouldn’t tell you these things because now whenever you read my stuff you’re apparently going to notice every amazing thing I say.)

I was nominated by an inspiring, very funny blogger The Zookeepers Wife. She writes at www.tzookeeperswife.blogspot.com and don’t forget to type in t and not the, because if you do it will take you to this VERY strange blog about Nazi’s and gardens and zoos.  Unless you’re wanting to learn about those things, then by all means go there. I myself like to learn about Nazi’s and zoo’s, not so much gardens. I kill everything non-breathing.  And you can’t count that photosynthesis sciencey crap. Even though it involves oxygen.  It doesn’t involve lungs so it’s not real breathing. I kill things without lungs.  Although fish don’t have lungs and I’m not really good at keeping fish alive either…maybe I need to rethink my argument?

Somehow I have gotten a WAY off track here.

Check out www.tzookeeperswife.blogspot.com.  She’s funny!

The rules of the award:

1.Link back to the person who nominated you. (Check!)

2.Post award image on your site. (Umm…can I just post a picture? Maybe I’ll have Ginger draw me an award and I take a picture of that.)

Okay. Ginger decided that rather than draw a picture, she wanted to be IN a picture.

3.List 7 random facts about yourself. (Well I think I’ve already given you several random facts about myself.)  1. I get off track INCREDIBLY easy and I am a serial plant/fish killer.  2. I say words like: apparently, definitely, amazing, totally, holy crap, and incredible….(many more) WAY too much. 3. I love to use LOTS of exclamation marks and CAITALIZATION! It makes me feel very powerful and amazing!!  IT’S KIND OF LIKE YOU’RE LETTING ME YELL AT YOU IN YOUR HEAD. YOU LET ME DO THIS AND YOU CAN’T EVEN SAY NO!! Unless you just stop reading. I guess that would be bad.  You could just be like “Forget that! I’m not going to take this abuse anymore!” Maybe I shouldn’t yell in people’s heads so much? 4. I like to read to learn. I’ve read about Nazi’s, zoos, other people’s lives…. 5. I can’t believe people actually read what I write or tell me that they like it or find it inspiring. That’s just crazy to me. I was terrified to start writing about Oli and the beginning of her life. But, I needed to say it. I thought that if I told people that I was sad in the beginning and thought that it was unfair, you would hear “I don’t love my daughter.” I never wanted anyone to ever think that I didn’t love her. Of course that was ridiculous. You never heard that at all. You heard “This is hard sometimes.” It’s just something my head told me.  I have since learned that I can’t fix the shite in my head with the shite in my head.  6.  I love my kids, family, and friends more than anything in the world.  I feel so incredibly blessed and lucky to have such a supportive, understanding, and amazing circle around me.  7. I just wanted to tell my story because I thought that it might help someone else feel less alone and thought that I would be mostly talking about Oli.  Little did I know what the story was really about and all that I would come to learn about myself.  My main goal still remains to help someone else.

4.Nominate 15 other bloggers.

5.Notify the bloggers that you nominated them.

First is my very good friend and a very inspiring mother, Lacey.  Her son is autistic and her humor, courage, determination, and attitude have always made me want to be better. http://www.johnnysjourney123.blogspot.com/

Next is my other good friend and inspiring mother, Bridget.  Bridget has a sweet little girl with Oli’s same eye condition. Faith has bilateral anophthalmia and is partially deaf. Bridget and Faith’s journey has been long and hard, but their spirituality and incredible resilience is remarkable. www.superbabyfaith.com

My friend Jill also has a daughter, Ella, with bilateral anophthalmia. She is just the absolute cutest little thing you will ever see. Jill and Ella always find the humor in life and that is one of the most inspirational things I’ve found. http://ibfamlife.wordpress.com/2013/02/21/running-well/

My friend Heather has a son with bilateral anophthalmia and he is also deaf.  She is super inspiring. I had the opportunity to finally meet her and her son, Orion, in person this weekend at the Deaf-blind Symposium.  www.hexwit.blogspot.com
 

Another blogger that I found when I started my wordpress site (I’m in the process of switching all of my content to www.mommyhasissues.com) is Charity.  Her daughter has Cri du Chat. http://mydanceintherain.org/ 

Charity has 7 kids! And she’s still alive! She’s not even in a straight jacket…or more importantly…she’s not in jail. Which is where I would probably be if I had 7 kids.  Yep. Give me 7 kids and I will go to jail.  I will be there for murdering my husband. If that’s not inspiring, I don’t know what is?

My friend, Amy, just started a blog about her life raising a son with ADHD. She is also funny and inspiring. http://www.themommabearchronicles.blogspot.com/

I don’t personally know the woman who writes this blog, but I really like it and enjoy reading it. She has a daughter with an undiagnosed condition.  http://phoebeholmes.com/

This is another blog that I really like. She actually writes two and I’m going to nominate them both. Her first is about her life as a mother. http://littlestepsblogdotcom.wordpress.com/

And the second, she writes about authors and where they lived and died. It’s really interesting! http://wheretheylivedandlie.wordpress.com/
 

This one is written by the inspiring and very funny Lexi Sweatpants.  She has a daughter with Down syndrome and a son with autism.  http://www.mostlytruestuff.com/

 

I know that it’s not 15 and I’m sure there are some that I’m forgetting, but I can’t think of any more right now. I will come back and add to my list. 

By the way, if I nominated you and you don't want to do it...that's totally fine. I have been asked a few times to do this kind of thing, one of them was a Liebster award? and I never did it.  I just don't want to be a bloghole and blow them off. I really do appreciate the nominations.  Not that you would be a bloghole or unappreciative if you didn't want to do it.  Oh dear...this is not coming out right.

I never did it before because I just don't find me all that interesting. It's hard for me to tell you random things about myself. I can, however, tell you all about my misery, total sadness, wanting to curl up and die, poop stories, throw up stories, boogers...and many more. Now that I write it, I should have had nooooo problem filling out the questions!

Thank you so much Tamara for nominating me. I really appreciate it.  

I can now add a new word to my list of words that I say too much: inspiring.

 

 

Can You See Me? I'm Here In The Darkness. (Part 4)

I spent the last few days attending the Blind Cafe and then the 2013 TX Deaf-Blind Symposium. Because of these two events my perception of Oli and some preconceived notions of her abilities/disabilities have completely been swung around and turned on their heads. 

Where I have focused a lot of my time on what she cannot do because of        or what she will not do because of         .I am now seeing exactly what she is capable of and what is possible if I give her the chance.  Although I really felt like I had given her lots of opportunities to explore the world and chances to communicate, after talking with blind adults and listening to experts in the field, now I feel like. . . Holy shit! I still have been regarding her learning opportunities in terms of what I see as limitations because of her disabilities.

While I was sitting in the darkness at the cafe a striking realization came to me when the wait staff started answering questions.  I hate to say that when I first see a person with a disability, I see a disability.  I'm not supposed to see that right? Because my daughter has a disability?  But I still do.  I don't like that about me and I really try not to.  I realized that one of the things that was so wonderful about listening to the blind adults speak in the cafe was. . . I didn't see a disability.  I couldn't! And it was great.  All I heard were intelligent, funny, nice people speaking. And then I started thinking about what an advantage they have over all of the rest of us.  They honestly get to know people in a fast, genuine, real way, bypassing all of the visual, judgemental, nonsense that sighted people have. 

Always aspiring to be one of those "good" people who doesn't judge people by what they look like, what they're wearing, or how clean they are (although I'll bet blind people notice that one even quicker than me) I suddenly started thinking of Oli as. . .lucky. I stopped viewing blindness as something I would never want for her and although I still wish she wasn't, I started looking at all of the good things about blindness.  Like seeing people by way of her heart and judging them by the truth in their words and the honesty in their voices.

I had a moment when I was sitting in the dark, listening to the band play, that I was overcome by sadness.  Silent tears poured down my face as I sat there thinking about how hard it was. Walking around not knowing where I was going, trying to find my food and not knowing what I was eating because nobody told me.  Tasting food that I HATE and not knowing if I had a drink. Wanting to wipe off my hands and not being able to find my napkin.  I felt helpless. I felt alone. 

 

But as I sat there crying quietly so no one would know, I started to recognize that feeling. I remember spending a lot of my time feeling that exact same way in the first years of Oli's life. Lost and alone, crying silently in the dark.  I welcomed that feeling like an old friend and greeted her with open arms without even realizing who she is.  Who she really is... is my own self pity. My own fear, ignorance, and judgement. 

I opened my eyes, dried my tears and sat up straight in my chair. 

NO! No more!

I will not allow this twisted friendship to continue! I will not welcome you into my heart!  I will not pretend anymore that you will stay for a short visit and then let you live on my couch for years!

You Miss. . . are no longer allowed in my front door.

I am not helpless, weak, alone, unheard, unloved, or in this by myself.  More importantly, this is not about me. 

 

This is about Oli and she is none of those things either.

 

(Thank you for reading about my experience at the Blind Café! If you're interested in learning more or want to know if the Blind Cafe is coming to a city near you go to www.theblindcafe.com The End.)

Can you see me? I'm here in the Darkness. (Part 3)

As I concentrated on that feeling of smallness and aloneness, my husband nudges my shoulder propelling me out of my reflection.

“Hey Shannon?  Have you tried shaking your head?”

“No.” I reply laughing at his enthusiasm for the experience.

“Try it. I’ve been doing it for the last 5 minutes.” He chuckles.

I start shaking my head back and forth, imitating Oli’s constant head movement.

“What’s it doing for you?” I ask Seth after a minute.

“I feel like I can hear the sounds around me better. I hear something different each time I turn my head.” He tells me.  “What are you getting out of it?”

“Dizzy.” I respond. “I could only do it for a minute before I started feeling like I wanted to throw up.” I am a person who couldn’t even ride the Teacups at the county fair without wanting to throw up.

While I was sitting there my eye was continually drawn to a little red light on the ceiling. I’m guessing it was a smoke detector light or something like that. In the darkness I could orient myself to that light.  Every once in a while another small light would be illuminated in the back of the room.  I think it was from staff coming in and out and lifting a curtain.

Although I was WAY more secure sitting in my chair and not walking around in the dark, I was immediately drawn to any kind of change in the blackness.  When I would see that little bit of light, a tiny tiny minute change in the texture of the dark, my body seemed to be able to orient itself to it.  I instantly knew where I was in space. I didn’t feel so lost. I began to realize why it has taken Oli so long to be aware of where her body is.  I began to recognize the HUGE importance of teaching her orientation with regards to herself and her environment because she doesn’t have any kind of light perception. 

All of a sudden the lessons that I had been learning and teaching her made absolute and complete real sense to me.  A light went off and I felt it. I felt why it was so important.

“It’s now time for the question and answer part of our night here at the Blind Café. The blind waiters and waitresses are inviting you to ask questions about what it is like living as a blind person.” The man who made this whole night possible, Rosh Rocheleau, stands up and introduces them.

“Everyone who has a question raise their hand.”  This statement is met with a nervous, awkward silence and then followed by laughter as the waiters begin to laugh.  Oh? It’s okay to have a sense of humor about this whole thing? 

I think sometimes people are so insecure and uncomfortable around people who are different from them that they forget that they are just like everyone else. They are smart, funny, happy, real people. Except for the fact that they cannot see, they are just the same as you.  The blind wait staff made us feel like it was okay. It was okay to ask the typical questions about blindness.  They were so comfortable and confident in themselves, they tolerated the ridiculous questions and were happy to dispel many myths.  I have to say, I was slightly annoyed at some people’s stereotypical questions about blindness. However, I am not afraid to admit that I too, have had similar questions when I first learned about blindness.

People asked questions like “Do you see in your dreams?”

Answer: “No.” People who have been blind since birth don’t see in their dreams because their brains just don’t work like that. They have never seen anything so their subconscious has no reference to input visual pictures into their dreams.  They dream in smell, sound, and touch.

“Are your other senses super enhanced? Did they become heightened?”

Answer: “No. We don’t develop super powers like Superman.” A blind person’s hearing and sense of smell are the same as everyone else’s.  If measured I’m sure it would be at a normal, appropriate level.  Blind people just learn to use their senses better than you or I. They pay better attention to things that we generally don’t because we experience our world about 60% of the time through vision.

“Do you hate it when people say things like ‘Did you listen to American Idol last night’?”

Answer: “Yes. Absolutely. I try to be nice about it and if someone says ‘Did you listen to ….’ I respond, ‘Yes. I watched….last night.’  You don’t have to adapt your vocabulary just because I can’t see. I still use words like: see, look, watch….because they are acceptable terms in our language.”

“What is another one of your pet peeves that people do to blind people?”

Answer: “I hate it when I go out to a bar or restaurant with my friends and the bartender asks my friend what I want. They don’t ask me. They’ll say things like ‘What does he want?’ You can talk to me. Hello! I’m standing right here!  I also hate it when I give them my money and they hand my change back to my friend.  They never hand it to me.  Ummm….it’s MY money. You can give it directly to me. Sometimes people treat me like I’m a child or incapacitated and I hate that.”

“What is a relationship like with another blind person vs. a sighted person?”

Answer: “Really, it’s the same. There is just a much bigger learning curve and much more teaching involved in dating a sighted person.”

 

(Check back again. I STILL have more to tell you.  I could probably write a whole book on this experience:)

 

Can you see me? I'm here in the darkness. (Part 2)

As I continued my experience randomly selecting food and taking small fearful bites (you never know when they would sneak in another olive, or infinitely worse, a bit of cilantro) I start listening to the conversations around me. I turn my head to the left and listen.

Perk.  No one could see that I was eavesdropping. 

They were talking about what brought them here tonight.  Most people had just heard about it and thought it would be an interesting thing to try.  I speak up and say that I have a blind daughter.  They start asking me questions about her and want to know what she has to say about blindness.  I explain that Oli has autism and doesn't talk.  A woman across from me and to my left starts to tell me about her friends daughter who is also autistic.  We are interrupted by a loud voice behind me.

"Seth's wife? Seth's wife?"

"I'm here!" I call out.

Were you wondering where my husband was during my first moments in the café?

Where else?

In the bathroom.  Minutes before we followed the waitress behind the curtain and stumbled into the darkness, Seth decides he has to pee.

I guess the line was really long because he hadn't returned when it was our turn to be seated.  I knew he would find me eventually.

I grab his hand, well. . .I try to grab his hand, but really just keep grabbing our waitress Faith's hand.

"Nope.  Your still holding onto Faith." She tells me as she tries to guide me to Seth's hand.

"See? Woman hand." I touch her smooth hand. "Man hand" She laughs as I finally grasp hold of Seth.

"Ahhh. . .very important detail. Smooth soft girlie hands and rough man hands." I say giggling about my complete ignorance.

I really need to concentrate and let me other senses take over.  I am focusing on the blackness with my eyes.  Opening them wide and trying to discern any tiny shape, form or different shade of darkness.  There was nothing and I am disoriented. 

After Seth is seated I turn back to my left and try to speak to the woman about her friends daughter again.

"So your friend's daughter has autism?" I speak in the direction I had before.

There is no reply. 

My voice seems small and gets lost amidst the other conversations.  I have no other way to get her attention because I cannot make eye contact with her and don't know where she is to touch her arm. I don't even know her name.

All of a sudden I feel very alone and lost.  I feel unseen and unnoticed. 

Is this what it is like for Oli? She can't see me and she can't talk to me.

Does this sweet little girl feel unnoticed, unheard, lost and afraid in her world of darkness?

I slump in my chair as my heart begins to feel unbearably heavy.  I sit back as those startling realizations hit me and think about that moment.

I think about how I am feeling at that exact point in time and try to burn it into my brain.  I don't want to forget it because I am learning.  I am finally learning a very small part about what it is really like living in Oli's world.

(Check back later. I have more to tell you!)

Can you see me? I'm here in the darkness. (Part 1)

“Hold on to the shoulder of the person standing in front of you. Okay. Everyone ready to experience the Blind Café?”  The woman at the front of the line leading us into the darkness has an advantage.  An advantage that normally, in the sighted world she lives in, is a disadvantage. The woman in the black dress, holding a long white cane…is blind.

I quickly introduce myself to the woman in front of me and hold tightly to her slim shoulder.

The line begins to move.  I walk behind a heavy white curtain and am immediately plunged into pitch blackness.  As I took my first blind steps into the café my heart started pounding in my chest.  I didn’t know where I was and I didn’t know where I was going. I simply had to trust the woman in front of me and hope that I didn’t walk into anything or fall over.

“Watch your head!” the woman in front of me suddenly shouts.

“What? Where?” I am ducking my head and swerving to avoid an unseen attacker.

“Left? Right? Where is it? What am I watching out for?” 

No details are given.  Those were the beginning moments that made me acutely aware of the importance of descriptive details when speaking to Oli about her surroundings.

We all follow in line until we reach our table.  Our blind waiter begins to help each of us find our seat.  We were told that our food would already be waiting for us on the table.  I cautiously sit down and move my hands across the table. 

What am I touching? 

I have no idea. 

There’s some squishy stuff to my left at 10 o’clock.  There is a bowl of little balls and a short, fat, cone shaped object beneath the squishy stuff.  The plate in front of me has a large, papery thing on it with a stick poking out of its center. Above that is more wet squishy stuff on little flat circles.  Someone at my table said that there was bread in the middle of the table.  I slowly reach my hand out and above my plate.  I find more little balls.  I move to the right.  What is this? It’s slimy and wet.  Now my fingers are dripping with a slimy oily substance.  Where is my napkin? Did they give us napkins?  Do we have utensils?

I search to the right of my plate and thankfully find my napkin.  I also find a plastic fork.  I contemplate using my fork to try and stab at some of my food and then quickly realize how pointless that seems.  It will be way more efficient to use my fingers. Beside how will I know what I am eating unless I actually pick it up with my fingers?   I find the bowl of little balls again and search for the cone shaped thing.  I find it and decide to pick it up and smell it. My senses should be enhanced right? Since my vision is gone. Wrong. Total myth!  I can’t smell it at all.  It smells like something, but I have no idea what? It smells like my fingers and whatever that slimy stuff was.

After touching everything on my plate and probably everything on my neighbor’s plate too, I couldn’t tell where my food stopped and hers started, I decided to taste something.  I find the squishy stuff on the flat circles and pick one up.  I identified the circles to be crackers.  I could feel the salt and circles.  I raise it to my lips and take an apprehensive bite.  Olives!  Aaaccckkkk!! I HATE olives. The squishy stuff was some kind of spread. I don’t know what else was in it, but I could taste olives.  I put the cracker down.  Do I have a drink somewhere around here to wash the nasty olive taste from my mouth?  I feel my way a little farther to my left, past my plate.  I find a water bottle.  Of course, I didn’t know it was water until I took a sip. 

Moving on.

I’m really getting brave with my hands now.  I find the bowl of balls again.  I pick one up and pop it in my mouth.  A grape. Yay! Win! 

I pick up another ball. I think it’s another grape.  Wrong.  Olive!  What-Is-With-The-OLIVES!!  Tricky, sneaky, blind café. 

FYI. An olive feels like a grape.

Fine-Garbage, Happy-Lie Vomit

When I reread my old blog sometimes it strikes me as funny and sometimes it just strikes me as sad.  I think I honestly believed all of the things I wrote back then.  I believed that Oli was learning to walk and talk.  I believed that it was still possible for her to just one day catch up to other children her age.  Even though by the time she was 2 it was clear that she would not.

I was probably moving into denial at that point. I bounced around the first 3 stages of grief frequently in the beginning of Oli’s life.  One moment I would be in denial and isolation and the next I would be angry.  And then I would move into bargaining only to be swung back into denial.   Most frequently I found myself in depression.  Only recently have I moved on to acceptance and haven’t looked back since.

I didn’t know any of this then though.  I didn’t consciously realize that I was grieving and nobody told me. 

I thought maybe I just had bad coping skills (which I did) or that I was a bad person and a bad mother.

To combat my inner feelings of inadequacy, I told the world that everything was amazing.  I tried to convince them that this was my lot in life and I whole heartily embraced it and was moving forward.  I tried to convince you so maybe I would begin to convince myself.  I thought that the more I tried to sell everyone on my fineness, the more fine I would eventually become. 

It didn’t work out that way at all.  The more I lied and faked happiness the more alone and miserable I became.  By not letting anyone in, I isolated myself so deeply that I became entrenched in the quicksand of grief.  Every move I made and word I spoke sucked me down and eventually had me suffocating on my own fine-garbage, happy-lie vomit.

As I move forward and continue my story I have to read the old blog to A.) remember what the hell happened 3 years ago because so much has happened since and B.) because it reminds me of that grieving process and I can clearly see it now in my writing.  I can read a post from back then and see: lies, hope, sadness, fear, optimism, bargaining, pain, denial, anger, and a sense of being lost. 

The one thing I don’t see in any of the old posts are real, genuine feelings.  I see a bunch of words on a computer screen attempting to fool the world into believing that I was okay.

In the history of humanity, there was probably no bigger untruth.

I Choose To Call It "Helpfulness"

“No one is ever quite ready; everyone is always caught off guard. Parenthood chooses you. And you open your eyes, look at what you've got, say "Oh, my gosh," and recognize that of all the balls there ever were, this is the one you should not drop. It's not a question of choice.”
― Marisa de los Santos, Love Walked In

All I have to say today is: Good thing I started a blog when Oli was born and updated it a few times because I have forgotten half of the things that Oli did between the ages of 1 and 2. Stress induced amnesia? Sleep deprivation?

She started talking around the age of 2.  She had about 15-20 words back then.  She only said one word at a time except on one occasion where she used two.  I guess this happened?.. because I blogged about it.  True to my absent minded, fog clogged brain self I didn’t mention in the post what that two word sentence was.  I have no idea now.  That sucks… 

She used to say the beginning or the end of a word.  For milk she would say “ka” and later “ilk”.  For drink she would say “dri”.  She did say mamma all the time.  It started as “ma-ma-ma” and later became “mom-mom”.  Always strung together. 

Maybe she got it from Kekoa?  That boy never said my name just once and still doesn’t.  It’s always “Mom. Mom. Mom. Mom. Mom.”  It doesn’t matter if I answer right away or not.   Of course I tell him he sounds like a broken record.  Apparently I am no longer allowed to use this terminology with children, per the husband.  He told me yesterday “People under the age of 25 have no idea what that even means.  You can’t say record, tape, VHS…” 

I can say it as long as I want.  I can even yell it into a phone and then slam down the receiver! 

When did I become old?

What was I talking about?....

Oh yeah, Oli. The main character in my story. 

She also started learning to walk around this age.  Not walk- walk, but Oli walk which started with me holding her up and moving her legs in a walking like motion.  So basically it was just me, puppeteering her around the room. 

I guess now that I think about it, it was all me. 

I should describe this part instead of Oli learning to walk as Mommy forcing Oli to learn to walk.  I was so impatient.  Instead of waiting for the poor girl to do things at her own pace and in her own time I would impose my “helpfulness” on her.   

I can only imagine what Oli is thinking when I set out to help her learn something new.  Walking... talking...  perhaps braille reading?

“Really mom? Why don’t you just go ahead and do that by yourself and come on back down to earth when you’re done.  I’ll be here waiting in the land of reality when you get back.”

I chose to pretend that I helped her learn to walk. 

Okay, really I didn’t.  But I tried.  I tried for almost 2 years.  When Oli was ready to walk she did. When she was 3 and a half.  Despite my deceptive attempts to tell people she was learning to when she was 20 months old.  Who did I think I was fooling?  If you came over to my house and saw me hunched over, carrying my 2yr old with just her feet dragging on the floor, would you have been convinced that she was walking? 

"Look World! I am a genius! I give you----Oli's first steps! Just pretend you don't see me here doing everything for her."

I can’t help but laugh at my faked enthusiasm, my I-rock-at-this-parent-thing attitude and blatant foolery in my old blog posts.

 

               

My Special Needs Mother Hat

“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.  

 

The Night Was My Enemy

“Sometimes the hardest part isn't letting go but rather learning to start over.”
― Nicole Sobon, Program 13    


I called Oli's doctor and told her our decision to try Melatonin. She suggested that we start at 3mg and see if it helps.  The first night I gave it to her I was so hopeful that she would begin a normal sleep pattern. I crushed up the pill and mixed it in some applesauce at bedtime.  As Oli closed her eyes I whispered a little made up song in her ear.

"Sleep sweet Oli. Sleep tonight. Sleep sweet Oli until it's light."

It worked!! For the first time in months she slept through the night. I would like to credit my little song and the mystical powers of my voice, but there was a reason I was whispering it to her and not singing it.

Melatonin was now my best friend.

It was wonderful seeing what regular sleep did for her.  She had more energy, ate better, and put on some weight. She finally weighed 20lbs at 20 months old. 

It helped me tremendously too. 

Before we tried Melatonin I would occasionally have anxiety attacks when darkness fell.  I worried every night about how many hours of sleep I would get. Was I going to be able to function at work the next day?  If I was staying at home the following day I worried that my temper would be short and that I would be too exhausted to do anything productive with the kids.

The night was my enemy.  It held all of my fears, inadequacies, demons, unfulfilled dreams and unanswered questions.  It made me feel weak and useless.  I would hold my playful baby in my arms at 2am and silently cry so she couldn't hear my anguish.  I would turn my head so my tears wouldn't fall on her face.  And I would pray in the dark.  I prayed and prayed for peace. I prayed for comfort and then I would wrap her up in her blanket and hold her tightly to my heart.  Oli's link to my heart and the complete love I felt for her was the only tether I had binding me to this life.  This place and my role as a mother.  I held onto her and gave this tiny person the power to hold me down and keep me from floating away.

Once she started sleeping it lifted some of those anxieties from my shoulders and allowed me to take a much needed deep breath. I actually took deep breath. 

I hadn't done that in a very long time.

Airing Out My Bitchies

Today I am tired of trying to be upbeat and optimistic.  Although I usually am (or at least try to pretend to be) most days because it just feels better, today I am not.  Today I am gloomy Mcgloomster and I don’t want to pretend or try. I was going to FB about it, but then I was like "shit, isn't this what the blog is for? Letting my bitchiness all hang out." 

I think my morning started off badly when my demon child, lovely 2yr old daughter, woke me up at 5:45am by jumping on my head screeching at volume 1,000 “MOOOOMMY! I’M DONE SLEEEEEPIIIINNNGGG!”  I will now need to add search for hearing aids on my list of To Do’s today.

After begging, pleading, bargaining, yelling, and cursing at her to please go back to bed until at least 6:45, I pouted and reluctantly stomped down stairs.  She didn’t hear any of my pleas because apparently when she realized mommy was in a bad mood she high-tailed it to her happy place.  I found her sitting in her favorite spot.  Inside the TV.  Girlfriend could not possible sit any closer to the thing if she tried. 

After turning on Mickey Mouse (good thing that crap comes on early) I made coffee and proceeded to drink somewhere between 3 and 10 cups. I lost track after my 3^rd trip to the bathroom.  It’s my own fault for staying up so late.  I seem to have developed an unhealthy obsession with shows about the paranormal.  Apparently I am not the only one because every month Syfy, the Travel Channel, Bio, and every other channel on cable has added a new ghost show to their repertoire.  Last night it was Ghost Adventures and The Dead Files.

This stuff is serious….and I am fascinated. It drives my husband bonkers.  Sorry honey.  It’s a hobby?  Of course I can’t watch anything during the day so I am forced to stay up late into the night scaring the crap out of myself.   See Ginger?  The reason mommy is in a bad mood is because you force me to watch ghost shows at night. 

After spending some quality time on Facebook I decided that I needed to get out of the house.  Air out my bitchies.  My mom came over and we took the three kids to the park.  It was good and I felt better.  Oli had fun driving her little swivel car. Ginger and Koa ran around screaming and throwing sand.  I decided to take Oli down the slide.  It sounded like a good idea until I turned around and discovered two other children had also decided to go down the slide. 

My immediate thought was “Children, please don’t say anything stupid to me about Oli because I’m just not in the mood for lovely flower and cupcake responses.”  Kids are always asking questions about Oli.  Usually they are just curious.  Sometimes they’re mean, but that doesn’t happen very often.  Today, I just didn’t want to deal with it.  I can’t remember the last time I went to the park with Oli and someone didn’t ask questions about her.

Why doesn’t she talk?  Why doesn’t she walk? What’s wrong with her eyes? Is she a baby?

Normally I just tell them that God made her different and that she is blind.  I’m nice and friendly.  Honestly I would much rather have them ask me questions than just stare at her.  Today I was just tired.  I just wanted to be able to have fun at the park with her with other kids around and not have to answer questions.

Today when the little girl came up to me and asked why she doesn’t talk I just responded “She just can’t.”  I did smile, but then turned my back and walked away with Oli.

I feel bad. I really do. But, today I just couldn’t do it. 

Today I am tired.  And today I am tired of the questions and stares.

A Chance To Go Back In Time

I wonder if they will ever invent a way to travel back in time?  If they do, there are a few moments that I wish to revisit and appreciate a little more. 

I would like to go back to my wedding day.  Not so much to just relive that moment, although it was wonderful, but more to go back and see my grandmother again.  I was such a bitch that weekend. I acted like it was all about me and I didn’t spend enough time with her.  She flew all the way from Iowa to Hawaii to see her first granddaughter get married even though she was dying.  I wish I could go back and realize how short her time here really was.  I thought, Oh I’ll see her again in a few months.  I don’t need to go check on her in her room or have dinner with her tonight….Selfishly I let these moments slip by. 

She died a few weeks after my wedding.

I would like to go back to the days when Oli was a baby. I cannot believe I actually just said that!  I used to say you couldn’t pay me a million dollars to return to those days.  But here I am saying it. 
I have come to realize that something happened or changed in Oli after she turned one.  She seemed normal as a baby.  No head shaking, no flapping, she babbled and was interested in other people.  Other than her blindness, she was typical.  I was so distraught and terrified that I didn’t appreciate that she was okay.  She was okay back then.  She’s okay now, but it’s different.

I just watched a video of her yesterday from when she was about 6 months old.  She was playing in her bouncy seat.  I almost couldn’t watch it.  I had an inexplicable urge to reach through the TV and scoop her up and transport her to now.  Avoiding whatever it may have been that caused her autism.  Whatever connection that she lost or was broken between then and now.

My family will mention to me lots of times that they just don’t understand why she stopped talking and why she started shaking her head, flapping her arms, and having extreme meltdowns.  They will say things like “Remember when Oli said _____?”  And then look at me like I can somehow offer them a reasonable explanation for the change in my child. 

I can only look back at them with my own expression of bewilderment and shake my head.  I don’t know why, but I do remember those days.  Some of those memories are starting to fade.  Much like when my grandmother died. I have a harder and harder time recalling her face and voice as the years pass.  Seeing a picture of her brings it flooding back.  Watching that video of Oli yesterday did just that.

Yes, now I remember when she said mamma, milk, juice, out…. I remember when I used to do something to make her giggle and could snap a picture of her and it didn’t just show a blur of movement.  I remember when she used to try and hold a spoon and feed herself, when I could keep her engaged and she showed interest in things outside her body….. I do remember all of those things.  Even when sometimes I don’t want to because it’s just too painful.

I hope they invent a time machine some day because I would also love to go back and knock some sense into my head.  “Stop feeling sorry for yourself and pay attention to all that your daughter can do. Because some of those things, they will fade away…”

Was The Sandman Hiding In A Bottle Of Meletonin?

Taking 'naps' sounds so childish...I prefer to call them 'horizontal life pauses.'- Unknown quotes

 

When Oli was 18 months old I crumbled under her terrorist acts of sleep deprivation and gave her a magical pill called melatonin.   I had been hearing about this over-the-counter medication for months, but had been previously reluctant to try it.  The only medicine I had given her before was Tylenol, Prevacid for her reflux and a low dose antibiotic to prevent kidney infections caused by her kidney reflux.  I was scared to give my baby anything not approved by the FDA.  Which like most supplements, it isn’t.  

I was also apprehensive because I had read and heard mixed opinions about the use of it in children.  Although no one came right out and said “If you give your child this medicine it will harm her.” I had read that its use was too new for studies on its possible long term implications to be available.  So essentially I heard “If you give your child this it may harm her.”  That was an enormous and terrifying maybe.

That was why it took me an entire year before agreeing to try it.

Eventually I came across articles like this:

“Studies of melatonin use in children have shown it could reduce the amount of time it takes to fall asleep and increase the duration of sleep in children with mental retardation, autism, psychiatric disorders, visual impairment, or epilepsy.”----from cbsnews.com

At this point I didn’t know that she was autistic.  She was too young for psychiatric disorders and did not have epilepsy yet.  She was blind and could possibly have MR.  That was enough for me to start looking more closely at reasons to try it.

(Did I mention that it had been a whole year since the elusive Sand Man had made regular house calls to Pahrump?)

 

And I began to realize the very big importance of a very tiny gland that Oli just happened to be missing. 

So I began researching articles like these: taken from Wikipedia

"Circadian rhythm

In humans, melatonin is produced by the pineal gland, a small endocrine gland^[26] located in the center of the brain but outside the blood–brain barrier. The melatonin signal forms part of the system that regulates the sleep-wake cycle by chemically causing drowsiness and lowering the body temperature, but it is the central nervous system (specifically the suprachiasmatic nuclei, or SCN)^[26] that controls the daily cycle in most components of the paracrine and endocrine systems^[27][28] rather than the melatonin signal (as was once postulated)."

That was clincher for me.  If she doesn’t have the gland that produces melatonin and she doesn’t have any light perception to help create a sleep-wake-cycle then how in the hell was she ever going to sleep without some kind of help?

Once that realization finally sunk in I jumped into my car and raced my stressed, sleep deprived, pajama clad butt to Walgreens.  Like a woman on a mission I shoved aside little old ladies and received snooty stares from well rested patrons.  Oblivious to the rest of the customers in the store I made me way to the supplement section and grabbed two bottles.  My savior came in a little green bottle with a yellow lid. 

I immediately encountered an unforeseen problem.  There were two doses available at Walgreens. One that was 3mg and one that was 5mg.   How much do you give an 18 month old?  I had discussed trying Melatonin with her doctors, but we had never finalized the decision so we never talked about dosage.  I took them both to the register feeling severely deflated. I wasn't going to be able to try it tonight.  

I paid for my purchase and climbed reluctantly back into my car.

Another long night was waiting for me…

I Didn't Sleep in 2008

Everyone should have kids. They are the greatest joy in the world. But they are also terrorists. You'll realize this as soon as they are born and they start using sleep deprivation to break you.

 -Ray Romano quotes 

By the time my mom moved in with me in April of 2008 I think I had been slowly losing my mind. 

True, it was partly because of my complete submersion into Oli-land and lack of full emotional participation in anything other than blind baby support.  It was also due to a familiar term recognized world wide by new parents.  And talked about, dreaded, cursed, and feared by the blind community.

Sleep deprivation.

When my girl was 6 months old she just simply stopped sleeping.

She was on her own little planet where there was no 24 hour day.  Sometimes her day was 20 hours, sometimes it was 27 hours.  There was absolutely no sleep schedule.  She would go to bed at 7pm get up at 1am, be up until 9am, go back to sleep until 2pm, get up and stay up until 12am, sleep until 4am. . .every single day was different.

When I went to work with bags under my eyes, mismatched socks, and had forgotten to run a brush through my hair, the new moms in the unit would spot me across the room like a bug drawn to a light.  They knew what I was suffering from and they were always ready to inundate me with solutions to Oli's sleep problem.

"Put her to bed at the same time every night. Make sure she's had enough to eat. Bath her with this soap and then apply this lotion. Play this song before bedtime..." The list goes on and on.

I listened and I tried anything anyone ever suggested to me. Nothing worked.  The only thing I refused to try was putting a dab of alcohol in her bottle at night.  But that may have simply been because I didn't want to share and needed every last drop.

I read books on sleep,  googled sleep solutions for blind babies, talked with other parents of blind children, asked her pediatrician, doctors who worked in my unit, and random strangers at the grocery store who looked just like me.  A soundly sleeping infant in a car seat and a mother looking like she had just returned from war, hadn't eaten in a week, showered in 2, or slept for 3.  We would bond in the frozen foods section describing last nights battle in which our child always defeated us.  Granted, their baby was only a month old and mine was turning one year.

Eventually by the time my mom arrived I had just given up.

 

I was totally convinced that Oli was never going to sleep again.

Flies, Trash, and Dead Bodies! Oh My!!

Like a corpse left in a garbage dumpster in the middle of summer.

 Sin City quotes 


Right around the time that Oli turned 1 and got her first pair of prosthetic eyes, my mom moved in with me to help with the kids.

Which means she moved to the town of. . .Pahrump.

I wish I could tell you that it was a quaint little cozy city with white picket fences and the scent of fresh flowers in the air. 

 

It was more like a city from Stephen King's book Desperation with trailers sporting rotting sideboard and the scent of dead bodies in the air.

When we moved there we were sold on the idea of Parump becoming an up and coming city. With the housing prices sky rocketing in Vegas, we thought it would be an excellent idea to purchase a house in another town and wait for their market to increase. We thought there would be an influx of buyers recognizing the beauty and the quiet peace of living in the middle of the desert.

 

At least. . .this is what my realtor told me.

"Buy here! Buy now! You won't regret it when your house doubles in value in a year!"

It didn't work out quite like that.

Apparently everyone else spotted what I missed when touring Pahrump.  The poverty, high rate of meth use, decaying landscape, trash, and a disturbing amount of flies.  I guess the fact that Sherry's Ranch was just down the road didn't encourage families to move there either.  Yes, this is a brothel. 

What in the hell were we thinking?

And then I asked my mom to move there?

Granted we technically didn't live in Pahrump.  We lived in a track community about 5 miles outside of town. 

 

It wasn't far enough.  The trickle of garbage, fly larvae, and stench of unbrushed teeth eventually made it's way right to my front door.

The housing market in Vegas started on its downward spiral the year after we moved, which subsequently really plunged the value of my house into the toilet. 

After my mom moved in with us she began to recognize that my optimism when describing my city was really just an act of desperation to get her to move to Nevada. 

I used to tell her "It's really not that bad. You'll get used to it."

I think she wanted to believe me at first until one afternoon she told a coworker that she had a blind date that night. The woman looked at her with hope and jealousy in her eyes, and sincerely asked "Does he have all of his teeth?"

That was the last straw for my mom.

It also didn't help that her date turned out to only be in possession of most of his teeth and then offered her a sad plastic rose at the end of the evening.

She stayed though.  She didn't hightail it out of there fleeing like a woman who is being chased by smelly, aging, toothless men. 

It did, however, end her dating career in Pahrump.

5 Ways Motherhood Has Changed Me

1. I can't stand silence.

 

I used to revel in the silence. Now if no one is crying, giggling, arguing, singing or asking me a thousand questions I feel like the apocalypse may have happened and I was left behind.
I also can't stand it because I know what it means. . .someone is coloring on the walls, making hair and dresses out of the toilet paper, or gluing my new earrings to paper.

2. I cook.

 

No, I don't cook well. But I do cook. Before I had kids cooking consisted of pouring a bowl of cereal and adding milk.  Now I am like a mad scientist. You can find me in the kitchen whipping up concoctions, smoke billowing from burning pots and pans and children begging me for McDonalds.  (They just haven't developed their pallets enough yet to appreciate my cooking.)

 

3. Drool no longer bothers me.

 

I seriously had a major hang up about drool when I was pregnant with my first child.  Thick, drippy, smelly, liquid constantly hanging from a baby's mouth was one of my phobias. Gross. I never thought I'd get used to it.  Now I don't even think about wiping my kid's mouths with my shirt, pants, hands, arm, or the nearest toy or baby blanket if it suits me. Sometimes I'm sneaky and wipe one of my kid’s mouths on the back of my other kid’s shirt. Excellent reason to have multiple children. You never run out of clothing surfaces to wipe faces on.

 

4. I don't sleep.

 

Ok I do sleep, but I definitely don't sleep like I used to. I used to close my eyes and be completely comatose until my alarm went off the next morning.  Now I am on night time mommy watch 24/7. I hear a cough, sneeze, or fart in the night and I am suddenly the world’s fastest, sneakiest spy. I creep into their room, find out which one made the sound, decipher if it needs further investigation and then escape like Houdini before I am spotted by the enemy.

 

5. I think yoga pants and pajamas should be a strictly enforced dress code for stay at home moms.  

Before I had kids I wouldn't have been caught dead without my hair brushed, make up on and a properly thought out wardrobe. Now I think. . .Why do I have to get dressed to go to the grocery store? Why do I need to put on my "good jeans" (you know. . .the ones that don't make my ass look like a deflated saggy pillow) to go sit in a circle with 15 other toddlers, singing The Wheels on the bus, coloring happy faces and trying to keep my kid from gluing the picture to the table? No, my good jeans are reserved for the times when even my pallet is too underdeveloped to appreciate my cooking and we need to go to out to eat. I mean really out to eat. Like going to McDonalds and forgoing the drive through to sit in the exceptionally fun play room.  I mean Playscape. . .yes, my jeans must be worn to the Playscape. If for no other reason than to provide a thicker barrier between my knees and the pee soaked tunnels my kids ask me to crawl through.