Archive | Story RSS feed for this section

Would Things Have Been Different?

24 Apr

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

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

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

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

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

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

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

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

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

Because I didn’t want to feel this way.

I wanted to just love her and believe in her.

I DID love her and I DID believe in her.

I didn’t JUST do it though.

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

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

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

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

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

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

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

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

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

A few minutes past and then my husband spoke…

I drive my husband nuts.

23 Apr

(Back to my Oli story…)

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

“Where are we going?” I asked.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

I smile sweetly at him again. He loves me.

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

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

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

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

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

Surprise honey! I want to move!

Something That I Don’t Talk About

28 Mar

Aggghhh….Okay. This is the post that I didn’t really want to write. I didn’t want to write it because it makes me really sad. Which actually says a lot.

People have asked me to talk about what I felt like once I became pregnant again. What happened to make me decide to have another baby once I knew all that I knew about Oli.

I’ll start by telling you that it wasn’t an easy decision. Especially after we learned that Oli had a genetic deletion. It was something that could affect subsequent babies, although the likelihood was only 5%. 5% feels pretty huge once you already have an affected child. Any percentage above 0 feels like an enormously stupid roll of the genetic dice.

You want to know how I felt when I looked down at that little white stick and saw 2 pink lines appear?

I felt terrified. I felt scared and selfish and happy and overwhelmed.

I felt like I had probably just sentenced this tiny little miracle to a life of blindness. A life of doctors, therapies, and disabilities.

I didn’t have a whole lot of time to process learning that Oli’s condition was genetic. I found out about her OTX2 deletion and then found out I was pregnant just a few weeks later.

Many scenarios ran through my head once I knew that I was going to have another baby. One thought, which I really really HATE to talk about, was maybe I shouldn’t have her. Maybe I shouldn’t go through with this pregnancy.

I don’t like to talk about that thought because the idea of my Ginger not being a part of my life literally brings me to my knees with pain. It sends a stabbing knife of sorrow straight through my heart and makes it hard to breathe.

My baby girl. My little Ginger. I had seriously thought about not having her.

See no one really talks about this.

I was raised Catholic and abortion is something that you are never allowed to even mention let alone talk about. I never thought it would be something that I would ever consider. Because I never thought that I could do it. I always thought that if I got pregnant then I got pregnant and it was my responsibility to take care of that baby. Abortion was never an option.

Well…right at that moment…it became an option.

My views on abortion have always been more pro choice. Mostly because I don’t believe that I ever have a right to tell YOU how to live your life. That goes for my beliefs on everything. Religion, marriage, abortion… You name it. I don’t feel like I have a right to tell you what’s right for you. I’ve never lived your life, had your experiences, dealt with what you have. I never would feel comfortable telling you what to do. I don’t believe that anyone really should. Just because something may or may not be right for me does not mean that it may or may not be right for you.

So anyway…I struggled with what the right thing to do for me, my family, and my unborn baby might be. I did a lot of crying and a lot of praying and pleading that nothing was wrong with this baby. Eventually one night I was lying on the couch late at night. I remember lying there thinking, I have to make a decision before it’s too late. I tried to picture myself going into a doctor’s office and having the procedure. I tried to feel what it would be like to not know that anything was wrong, but choose to play it safe and not have the baby. How did it make me feel? Could I live with myself terminating a baby if I didn’t know that she was blind? What if she was blind? Was it really that bad? Even if she had other disabilities or something else happened, was it really better to never have been?

The answer I came up with that night was…no. No. I couldn’t do it. I couldn’t end a life based on the fact that it might be hard for her. I couldn’t not have her because it might be hard on me. It was going to be scary, but I just couldn’t terminate the pregnancy. I decided that it would be way worse to NOT give this child a chance at life, then to just have the baby born blind. I chose blindness as a possibility for this child over death.

I’ve never made a more significant decision in my life.

I went to the doctor and then called the Albert Einstein Medical Center to see if they could do genetic testing on the baby before she was born to find out if she was missing her OTX2 gene.

It was scary. I was scared the entire 9 months that I was pregnant. Even after the amniocentesis came back and said that she was fine…I was scared. Because what if something else was wrong? What if they missed something? They missed noticing that Oli’s eyes were small before she was born, what if they missed noticing something with this baby?

It was scary because I continued to wonder if I had made the right decision.

Another baby was going to take time away from Oli. She needed so much more time because of therapy and doctor appointments and she just needed more help with everything. It was going to take time away from Kekoa. He had already had so much of his time stolen away by Oli’s disability. Another baby was going to take more. And the baby. What about the baby? Would I have enough time and energy or even enough emotion left for this baby? Would this baby get enough of what she needed?

Was this the right thing to do?

Could I do it?

I had all of those questions throughout my pregnancy.

And then Ginger was born.

I laid my eyes on the most beautiful baby girl. This little baby looked at me with eyes that said “Just love me. I don’t need anything else. It doesn’t have to be perfect. Just love me.”

And I knew that I had made the right decision.

It was the right decision for me. I look back and think about what if things had been different? What if something had been wrong? Now I know that it wouldn’t have mattered.

It would have been a different road, but it wouldn’t have mattered. She would have been perfect anyway.

Because Oli is too.

Oli has taught me that life doesn’t always lead me down the nice, friendly, easy path. It’s not always sunny and clear. And that in my life I have received gifts that I never would have looked at as gifts. But that’s exactly what they are. If my last child had been born with a disability then she would have had a disability. She would have been different. And that’s okay. Different is just different. No more, no less.

I would have gotten through it.

Just like we all do when life hands us something that we are not expecting. We hate it, are angry with it and scream at it. We deny it and argue with it. And then we get through it.

And we move on.

Because really?

What else can you do?

One Mother’s Expectations

14 Mar

“I thought that one day I would just wake up and have all of the answers. What I have found is that the answers I get, rarely have anything to do with the questions I ask.”

It was a warm day in June 2009 and I was sitting on our cream colored leather couch in the living room. I’m sure there was a cartoon on the TV that I had forgotten to turn off when my kids laid down for a nap. I was alone, which for some reason, I usually am when I get bad news. My husband was at work.

The phone rang and I glanced down at the caller ID.

Unknown.

I normally don’t answer calls labeled unknown and let them go to voicemail, but on that particular afternoon I answered it.

Unknown.

That is where I was sitting in the moments before I took that call. I didn’t know what Oli “had”. I didn’t know why. I didn’t have any answers. Why had her eyes not developed in utero? What was wrong with her? Why was she so different from other children her age? Why was she 2 years old and not walking or talking yet?

At that point in her life, I needed to know why.

I thought that if I knew why, I could help her better. I thought that if I knew why, then I wouldn’t be so angry with the world. If I finally got an explanation as to what had happened, then I could come to terms with the whole mess that had become my emotional prison.

I found out why, on a warm day in June when my phone rang and I answered a call from the Albert Einstein Medical Center. They were calling to tell me the results of Oli’s genetic testing.

I found out why it happened, but I did not find out why it happened to her. Which is really what I wanted to know all along.

Why did it happen to my family? Why us? Why did fate choose my sweet, innocent, beautiful little girl to bestow such a big obstacle on. A big difference. A hardship.

Why?

You see, for a long time I thought that this was some kind of punishment. I couldn’t understand why this happened to me. To my baby. I was a good person. I never hurt anyone intentionally. I had a good life. A happy life. I grew up with a great family. I had friends, went to college, had a job. I was grateful for my life and was just going along trying to be the best person that I could be.

And then…the ground fell out from beneath my feet.

I thought it was all happening to me and my family. It was my son and my husband who were affected by this.


I
took on ALL of the responsibility of the health and happiness of my little family because I was the wife. I was the mother. I was supposed to protect them, keep them safe and ensure their happiness.

And then Oli was born.

She was born and I wasn’t sure that I could do any of it anymore.

If I could not stop, prevent, change, or fix what had happened to this little person that I had brought into the world, then I could not stop, prevent, change, or fix what happened to any of them. That realization hit me like a 2 ton steel truck, right smack dab in the middle of my forehead.

When I realized that…I began to react and operate by my fear.

Fear of this big, scary world that had walked into my hospital room on another warm day in May, 2 years previously. That unknown world walked right in, handed me a big pile of crap called unmet expectations and promptly walked right back out of that room.

Oli wasn’t what I had expected. She didn’t fit into my box. The box that was supposed to hold my perfect little life. No matter how hard I tried to cram that square peg into that round hole, she would. not. fit.

When I answered that unknown phone call, I still had expectations. I expected to hear that she had SOX2. Something that lots of other kids had. This particular gene deletion is responsible for the majority of microphthalmia and anophthalmia.

You know what I heard instead?

I heard that she did NOT have SOX2. I heard that she had something else. Something that was not very well known or very common.

She had OTX2.

A gene called OTX2 was deleted from her 14th chromosome and caused her eyes not to develop.

They didn’t know a whole lot about OTX2. When they diagnosed Oli she was one of only 15 kids in the world known to have this deletion.

I expected to finally have an answer, a plan. I expected to find out her diagnosis and then hear, “She will do this at this time. Talk at this age. Walk at this age. Have this ailment, but never suffer from this one. She will go to college. She will get married. She will wear a pink dress to the prom.”

These are the things I wanted to hear when I got that phone call. I thought that I would finally have answers. Real answers. A plan. When I got the diagnosis, I expected a map for the rest of her life to be laid out during that phone call.

What I got instead was….we don’t know?

We don’t know what her future will look like. We don’t know when she will walk or talk. Or if she will at all. We don’t know if she will go to college, ever have a boyfriend or get married. We don’t know if she will ever even be able to live on her own. We just don’t know.

My expectations, the ones that I had been relying on this whole time, were shattered like a mirror when I got that diagnosis. Her future, reflected in that piece of glass that I had been focusing on for 2 years, came crashing down around my feet.

Now I had a diagnosis, but I was no closer to any answers. No one could tell me how to fix it for her or what I needed to do as her mother, to make her fit into this life. Because no one knew what this life would look like for Oli.

I hung up the phone and gazed out of the window towards the mountains in the distance. Tears freely rolled down my cheeks and I made no attempt to wipe them away.

Now I knew what had happened, but I realized right at that moment, that I would never know why.

Oli’s Genetic Library

12 Mar

In the summer of 2009 I got another phone call that I won’t forget. I remember exactly where I was sitting, what I was thinking and what I did after I hung up the phone. It’s just like when people remember where they were when a certain big event happened. JFK’s death…I’m not that old. How about…Kurt Cobain’s death and when I heard that they declared OJ Simpson innocent of murder. I remember exactly where I was when I got the call telling me of Oli’s genetic diagnosis.

We had some genetic testing done for Oli a few months earlier to see if she had a particular gene deletion. There are a couple of different genes responsible for eye development in a fetus. So it would make sense that one of these genes might be missing and caused her lack of eye development. She also had other things going on so it was more likely that it was a gene problem and not just a random occurance. Which, sometimes, it is.

These tests can be extremely expensive and if you don’t know what you’re looking for, you end up wasting thousands and thousands of dollars testing a multitude of different genes. You can’t just go into a lab and say “My baby was born without eyes, draw her blood and figure out the problem.” Number one, they will look at you like you have lost your mind. Number two, regular labs don’t run these kinds of tests. It has to be a specific lab and usually they are doing these tests to further their research.

We got lucky that the Albert Einstein Medical Center had some money and was willing to test Oli for 3 different gene deletions. (I think it was 3, but I only remember the names of 2.) SOX2 is the most common deletion in microphthalmic and anophthalmic children. This is the one they tested first. OTX2 is another one that is less common, but also causes micro and ano. Oli is missing OTX2.

(Kekoa is watching me type this and wants me to add “Oli is wonderful”. OLI IS WONDERFUL!! Kekoa you are just too sweet.)

Before I tell you about that phone conversation I want to explain one quick little thing so it makes sense. Oli has all 46 of her chromosomes. They are all present and accounted for. Imagine that the chromosomes are bookshelves. The GENES are the BOOKS on those chromosomal bookshelves. Oli has all of her bookshelves. Oli is missing some of the books off of her bookshelves. Notice I put “some books”? Yes. Multiple books. Not just the one titled OTX2. She is actually missing around 20 books off of her shelves. Bookshelf number 14 to be exact. Some book thief came during the peak of her fetal development and stole 20 books off of her bookshelf number 14. Bastard!!

Actually…that’s not how it happened. Those genes were already missing off of the ONE egg or that ONE sperm when she was conceived. What are the odds? About 5% according to her geneticist. We don’t know who it came from. The sperm or the egg? I’ll blame the sperm. The female egg is the epitome of perfection. Those sperm have been the cause of a whole host of problems throughout the history of evolution. War, famine, and STD’s. How about the invention of golf, ESPN or the Harlem Shake. Can I blame those on the male species?

Most of these books that she is missing have unknown functions. Like book number 63 might be responsible for something, but we just don’t know what? Maybe it did something thousands of years ago during the evolution of humans and we just don’t need it anymore. But… there is sits on the shelf, acquiring dust with a random title like “Fins” or “Hairy backs”. (Some people are still reading this particular book.) Or maybe book number 13 does something like provide the normal pace for hair growth. Which would explain Oli’s VERY slow growing hair. I have only barely trimmed it. Once. 4 months ago. I’m not sure if this is why her hair grows slowly, but I’m guessing it has something to do with it.

Sooooooo…that’s the deal with Oli’s library. Pretty interesting, huh?

Next I’ll tell you the story about the phone call.

A Phone Call I Won’t Forget

8 Mar

images (19)
On Saturday May 9, 2009 I got one of the few phone calls that I will never forget. How do I remember the specific date? Because we were celebrating Oli’s 2nd birthday.

We were having some family and friends over to the house to celebrate Oli’s special day. We were just getting ready for everyone to arrive when my cell phone rang.

“Hello?” I didn’t recognize the number on the display.

“Hi. My name is Bridget. I got your number from Tanya from the Albert Einstein Medical Center. I’m 22 weeks pregnant with my first child and I was recently told that they suspect that she has microphthalmia. I know you have a daughter with micro and I just had some questions and wanted to talk.”

It seemed like all of the breath was expelled from my lungs in one quick whoosh. My heart dropped to my stomach and the moment became imprinted in my memory. This woman was going to have a baby girl just like my Oli. I was one of the first people she reached out to. I knew how terrifying those first few weeks were when Oli was born. I remember searching for just one person who knew what I was going through. I found that one person and I still remember my phone call with her. Now I got to be that person. I got to offer another mother the same compassion and understanding that was offered to me.

I wished I could reach right through the phone and wrap my arms around this stranger.

“Where are you?” I asked.

“We’re just outside Austin, TX.” She answered.

Now, I was stilling living in Pahrump, NV at this time. Seth and I hadn’t even discussed moving yet. Well…we had discussed it, but we didn’t know where we were moving to yet.

Fate, strange coincidence? I don’t know. I find it eerie that we ended up moving about an hour away from Bridget just a little over 5 months later. We’re still friends, although she has since moved away to be closer to her family in St. Louis, MO.

“I’m so glad that you called me! I would love to talk with you about Oli and help you in any way I can.”

I remember carrying the phone into my bedroom, mouthing “another A/M (anophthalmia/microphthalmia) mom to my husband, and closing the door. I sat on my bed and asked Bridget to tell me her story. How she found out, what she knew about micro, and most importantly, how she was feeling. I remember she sounded scared, lost, and overwhelmed. But, she had something in her voice that I had been missing. Something that I pretended to have, but always fell short of achieving.

She had faith in her voice.

A lot of babies born with microphthalmia have some sort of vision. If the eyes are not too underdeveloped they may have some usable vision or light perception. Sometimes only one eye is affected and the other eye is normal. If the micro is severe enough, then the kids don’t usually have any sight and sometimes even when the micro eyes are not severe, there is no vision because other structures are involved. Like underdeveloped optic nerves. Basically….one just never knows until the babies show us that they can see or not. Anophthalmia means the eye is missing completely. This also can affect only one eye, the other being normal, or it can happen in both eyes. You would think that the kids with bilateral anophthalmia would not have any vision at all. You would think that they would be 100% blind because, well…because they are missing their eyes. Not true. I have heard of some kids with anophthalmia in both eyes and these children display signs of having light perception. You just never, ever know. You cannot say with any certainty that a baby is blind until they absolutely prove to you that they are.

When Bridget went in for a routine ultrasound the tech noticed that her baby’s eyes seemed small. Upon further testing/measuring the eye sockets they realized that they were really small. Although, no one knew the extent of the underdeveloped eye sockets. They wouldn’t know for sure until her baby was born.

For a long time after Oli was born I would think about what it would have been like if I had known about Oli’s eyes before she was born. Most people don’t know until birth because eye measurement just isn’t something they do with a routine ultrasound. They only do it if the tech notices that the baby’s eyes look small. I can make arguments about which would have been better for me, knowing or not knowing.

On one hand, I’m glad that I didn’t know because I got to enjoy my pregnancy. As much as I can enjoy being pregnant, which is not very much. I didn’t dread her delivery or have to worry about what would happen afterwards. For people like me, this was a very good thing. My mind has a hard time staying in today as well as suffering from constant abuse from my nemesis, Gertrude. That little old lady would have made my life a living hell in the months before her birth. If I would have known I would have been plagued by a constant rush of bad scenarios and terrible outcomes running through my head.

On the other hand, if I would have known, maybe I would have been better prepared. Maybe I could have talked to another A/M mom before she was born. Maybe it would have helped. Maybe not? Maybe I would have been paralyzed with fear and raging pregnancy hormones. Maybe….

Now it doesn’t really matter. Not knowing is just part of my story.

I talked with Bridget for a long time that warm day in May. I tried not to let my sadness or my fear for her creep into my voice that day. I tried to just listen and offer her whatever I had that might give her some peace. The truth is…Bridget already had it. Although I’m sure that she was scared, she already had a sense of peace about her because Bridget had faith in something bigger. Faith that her baby would be born exactly as God had intended and she knew that her baby would be well taken care of.

Her baby girl was born in September 2009. She has bilateral anophthalmia. She is totally blind.

And she perfectly named her baby….Faith.

If you want to read more about Bridget and her sweet Faith go to www.superbabyfaith.com

imagesCA4MXAL0

Don’t Put Me In The Room With The Big Comfy Couch!

5 Mar

When I approached the information desk and made eye contact with the woman behind it I must have looked a little “frazzled”. When I asked her if Oli was out of surgery yet she must have sensed my panic, noticed my tightly clenched fists, or saw me on the verge of crying because she immediately went to check for me. She even bypassed pretending to know how to work the phone or computer.

She came back a very long 5 minutes later and said “No. She is still back there, but they will be done soon. She’s doing just fine.”

“Oh okay. Thank you. I knew everything was fine, but you know…..well, I had to check because you see, she’s blind and autistic and has this rare gene deletion, so we don’t really know a whole lot about it and this gene caused her eyes not to develop so she wears prosthetic ones and she started having seizures in 2011 and…..”

Crap. I lost her.

She’s “working on the computer” now and trying to politely get me to go sit down.

What?

You don’t want to hear Oli’s life story?

Are you sure?

I can tell it 2.5 minutes if I talk really fast and run all my sentences together.

No?

Whatever. You’re missing out on a really good moment of mommy-gone-mad. Especially since I didn’t sleep last night. It’s an even better show when I don’t sleep. I’m much more likely to cry and then burst into fits of uncontrolled laughter.

Oh well. Your loss. That’s some quality entertainment your missing out on.

images (17)

You better believe that I sat my butt down in the nearest chair and did not move until that pager lit up and vibrated.

I finished my much needed cup of coffee, checked my Facebook (thanks for the prayers guys!) and waited.

6 hours later…..no, it wasn’t really that long. It just felt like it. They called my name and walked me back to another little waiting room.

This one was WAY better. It had a nice big squishy couch, a table and chairs, a little TV….

Wait!

No!

I don’t want to be in this nice room!

This looks like a “bad news room”!

You never give parents bad news in uncomfortable chairs. That’s just plain mean. You give them bad news in rooms with big comfy couches and little TV’s. Rooms with a circular table and chairs for having “discussions”.

I want to go back to that other room! I want to go sit in those crappy vinyl covered chairs with the fish again! NEMO! HELP!
images (16)

“Make yourself comfortable. The audiologist will be with you soon.” The volunteer tells me.

Make myself comfortable? I am going to get the worse news of my life, well….the second worse, behind “Your baby is blind, do you have any questions?” It will be the same. “Your daughter is deaf, do you have any questions?” I should call the School for the Deaf right now and just get this ball rolling. No need to waste time…Good thing I have my Tab, I’ll just Google it.

I mean…the news cannot possibly be good. This couch is just way too comfortable.

Maybe I’ll hold off just a minute. Google will be there in 5 minutes. Maybe I’ll take a nap.

I’m feeling a little over-tired and the craziness has begun to set in quite rapidly.

Luckily I did not have to wait long enough to be able take a nap. (Well I guess it wasn’t so lucky for everyone else that had to deal with me the rest or the day.) The audiologist walked in and sat down.

Uh-oh. She’s sitting. Number one rule of doctors and nurses: always sit and be at eye level when delivering bad news to parents.

Stand up lady! Stand up!

“The results of Oli’s hearing screen were 100% normal. She has perfect, beautiful hearing. No problem.” She doesn’t give me the chance to spin out of control with panic.

“Really?” I exhale for the first time all morning.

“She’s fine. But her eardrum on the right is still not moving well. I think that it’s probably just scarred and thickened from having so many infections in it and then rupturing. It DOES NOT affect her hearing. She can hear you just fine.” She explains.

SHE CAN HEAR! OLI CAN HEAR!

To say that I was ecstatically, fantastically, wonderfully, overjoyed…would be an understatement.

I now knew, 100% without a doubt, that my sweet girl can hear me.

imagesCATLF7OC
(I know how to carry on. I just do not know how to keep calm while doing it.)

Don’t Go And Get Coffee While Your Child Is In Surgery

5 Mar

If you can’t laugh at yourself, nothing else seems very funny. -me

As soon as the nurse’s walked out of the doorway carrying Oli, I began to cry. Some of the tears were shed from fear. That irrational fear that I would never see her again. Fear that the audiologist would walk back into the room and tell me that her hearing on the right was lost. Fear that she felt alone and scared. Some of the tears were shed because I was just sad because she is so young and has been through so much. No child should have to go through the things that Oli has had to go through. And the rest of the tears were shed because I am a mother. What mother wouldn’t cry if her child has surgery? What mother doesn’t cry when their child has anything that she can’t fix herself?

I waited in the pre-op room until the ENT came back to talk to me about his recommendations for putting tubes in her ears. He walked back into the room about 20 minutes later.

“She does not need tubes in her ears again at this time. They were perfectly clear. No sign of infection and no fluid. I was surprised. I’ll keep a close eye on them and we’ll see if they stay clear.”

I was surprised too! Usually when she has a runny nose and goopy eyes (which is did that morning) she also has fluid in her ears. I thanked him for his time and gathered my things to go wait in the surgery waiting room until they called me for the results of the hearing screen.

I walked back out to sit in those very uncomfortable waiting room chairs. Who designs these waiting rooms? It’s like they said, “What kind of chairs should we put in here? We know that these parents are nervous, afraid, and will be unable to sit still while they wait for hours for their child to get out of surgery. You know what would be the best idea for chairs in here? Hard, plastic ones with a thin vinyl covering with just enough padding to avoid bruising and corporate complaints. Why make this process any easier by providing sufficient butt comfort? Oh… and let’s put a few gazillion gallon fish tanks in here. Who isn’t comforted by Nemo and Dory? And make sure to build the cafeteria at least 5 miles from here. It’ll give them something to do.”

“Sounds like a great idea Bob! I have one more! Make sure the person at the information desk is at least 100 years old, has no idea where anything is located and can’t work the computer or the phone. Parents will think that’s hilarious and won’t be at all frustrated or annoyed.”

Before the ENT left the room and sent me to this wonderful waiting area he said that the audiologist would come find me in the waiting room sometime between 1 hour and next Tuesday to tell me the results of the ABR. They gave me this little blue pager that was supposed to light up and vibrate when Oli was done. I had to keep it with me just in case they couldn’t get a hold of me by my cell phone. I really wanted to go get a cup of coffee, but I hated the thought leaving the waiting room. What if the little blue pager only works within a certain distance from the surgery area? I doubted it would work 5 miles away and in an underground cave-like area, which is where the cafeteria was located. I seriously doubted that my cell phone would work there either. My cell phone only works half the time, above ground in my apartment.

I spent the next 10 minutes having an inner debate about coffee.

Did I really need it? My butt was really starting to hurt already. Maybe a little stroll would take my mind off imaginary surgical catastrophe situations. No, I can’t go. What if Oli needs me? What if the pager and the cell phone fail and something happens that requires the one thing that no nurse, doctor, tech, therapists, specialist, aide, helper, or 100 year old woman can help with. What if it can only be fixed by my immediate action or Oli will die? I don’t need coffee that bad. Wait…that would never happen. Oli’s fine and in good hands. I will only be gone a little while.

I decide to make a go of it and fast-walked my way out of the waiting room. My pager and cell phone were clutched tightly in one hand. A few weeks later I stumbled back into the waiting room, pager and cell phone non-vibrating, lit, or ringing. I sat down and glanced at the brown card attached to the pager. It was directions on how to use the pager. Aaaaa….I had been in enough restaurants (pre-children) to know how to use one. I didn’t bother reading the card when they gave me the thing. I read it now.

________Do not place pager and cell phone in direct contact. The pager may not work properly if this happens._____________

What?!

I was holding onto them both in the same hand!

Oh My God!! Something terrible has happened and I was GETTING F****** COFFEE IN EGYPT!!

I rushed the old lady at the information desk.

“My daughter Oli is in surgery. I went to go get coffee and I had my cell phone and the pager on me, but I didn’t know that I wasn’t supposed to put them in the same place because I didn’t read the card because, you know, I thought I knew how to work one, but then I got back and I read the little card and now I think you probably definitely tried to get a hold of me but my cell phone doesn’t work very well and of course the pager didn’t work because I had it in THE SAME FLIPPIN’ HAND AS MY CELL PHONE, STOP LOOKING AT ME LIKE I HAVE LOST MY MIND AND TELL ME MY DAUGHTER IS OKAY!!”

Of course I didn’t really say any of this. They might not let me take Oli home with me. I steadied my trembling hands, took a deep breath, and said “Can you tell me if Oliana is out of surgery yet?”

Is She Afraid?

4 Mar

I can only imagine that preparing a typical child for surgery is difficult for any mother. Trying to explain something about hospitals, doctors, sleepy medicine, discomfort, and recovery time to a 5 year old must be like trying to explain Japanese to someone who has never heard of Japan.

I have never had to do it. Oli is the only one of my children, so far, (I have a sneaky suspicion that Ginger will one day break something doing her karate, dance, acrobats off the furniture) that has spent any significant amount of time in the hospital.

This last October, Kekoa fell off of his bike and required a few stitches. However minor it seemed to everyone else, it was traumatic for him. He was really scared on the drive there. He wanted to know exactly what they would do, exactly how much it would hurt, and exactly who would be fixing him. He wanted to know what would happen if they couldn’t fix his cut? What would happen if it hurt too bad? (Worst case scenarios. I wonder where he gets this?) He needed all of the information and was not so thrilled about trusting someone he didn’t know to make him better. Up to that point, I had always done that.

“Why can’t you just fix it mommy?” He asked me that multiple times on the drive there. I told him that the cut was just a little too deep for mommy to fix. I talked to him about the nurses and the hospital room where it would happen. I told him that they would put some numbing medicine on it and that it probably wouldn’t hurt too badly. I told him that I would be right there with him the whole time.

Despite all of these conversations and words of comfort, he was really scared and nervous. Until we met a boy a little bit older than him in the ER waiting room that had gotten stitches a few months before. He told Kekoa all about it and assured him that it was no big deal and that it didn’t hurt. He immediately looked at me with relief in his eyes and said “See mom. It’s no big deal. I’ll be fine.”

I could only smile and thank that little boy for providing the comfort for my child that I just couldn’t seem to give him.

As I walked Oli into that same hospital on Friday morning I wished that someone could provide Oli with that. Despite talking to her in the waiting room, telling her we were there to see a doctor, and explaining what we were doing step by step, I still wondered if she felt afraid. It’s hard to explain a concept like surgery to Oli. I don’t know any other way besides just talking about it like I talked about stitches to Kekoa. When the nurse took her temperature, her blood pressure, listened to her heart and then had her change into a hospital gown, I just talked her through it.

But does she understand what is happening? Does she think we are at her pediatrician’s office, her neurologist, or another specialist? Does she notice that a hospital smells different than a physician’s office? Does she think that someone is going to hurt her eyes? The last time she had surgery she had an implant put in her eye. This was a painful surgery. Does she think that I am doing this to her? She’s always pretty mad afterwards. What does she think when I hand her off to a stranger and don’t go with her? Is she scared? Does she think that I’m not there for her?

I don’t know. It worries me more and more as she gets older. I think that she understands a lot and I talk to her like she does. The nurse did give her a sedative before they took her back. I’m sure it helps because I assume that she is scared just like any other child would be.

A child life specialist came into her room before the procedure and asked what would help her not to be afraid. I just said “Talk to her. Talk. Talk. Talk. Tell her everything. Tell her your name. Tell her before you touch her and tell her exactly what you are doing before she goes to sleep.” I told this to everyone who walked into her room that morning. Both the doctors, 4 different nurses, the audiologist, the student audiologist, and the child life specialist.

When it was time to take her back to the operating room she was fairly sedated and had a glazed look on her face. I gave her a kiss, told her that I loved her and that I would be there when she woke up. I handed my precious girl to the OR nurse who carried her away and prayed that God would go with her. I prayed that she understood what was happening and that she wasn’t scared. I prayed that they would quickly get her off to sleep so that if she was scared, she wasn’t for very long.

This not knowing…not knowing what she is feeling…is the absolute hardest part of being Oli’s mom. It’s so hard not knowing just what she understands.

Fine-Garbage, Happy-Lie Vomit

3 Mar

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.

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

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.

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: