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If she was autistic…where did that leave me?

7 Jun

When Oli was two years old, a few drastic changes took place in her life. We moved 1500 miles away. We moved away from one of her grandmas, her aunties, her cousins, and the only house she ever knew. We moved away from her sister.

At the time that we moved, Oli was still taking. On the drive down she repeated the words “up” and “out” over and over and over. It was a looooong drive. I remember that we stopped for breakfast one morning on the second day. My mom asked her what she wanted for breakfast. Oli answered “eggs” and then clapped enthusiastically. My girl loves eggs. She also said “Mom. Dad. Grandma. Koa. Milk. Juice. Eat. Hi. Bye.” Those are just a few.

Six months after we got to Texas, I had another baby. By this point her speech had already started to decline. Ginger was born in March 2010 and by September, Oli had completely stopped speaking.

She did NOT do well when Ginger was born. None of us did. Ginger cried all the time, day and night for 4 months straight. I couldn’t put her down. Ever. She was either eating or crying. She rarely slept. Oli was stressed out and hated the baby. If she heard Ginger near her she would scrunch up her face and push her away. If I tried to get her to hold the baby she would cry. She didn’t understand what she was or why she was so loud.

Oli started stimming more and more. She stopped repeating simple words and didn’t use the words that had been frequent in her vocabulary six months prior.

By Christmas of that year I knew that something had happened. Something else was wrong that had caused her to stop talking. Was it the stress of the move and the birth of her sister? Or was it something else?

I knew that I couldn’t just take her to a regular doctor to evaluate her. Blindness complicated the diagnosis and I didn’t want them to misdiagnose her or misinterpret her behaviors (blindisms) as autistic behaviors because in blind kids they are not.
Most kids born blind have a lot of the same self-stimulatory behaviors that autistic kids have. They have a lot of the same sensory issues too.

Oli constantly shakes her head back and forth. Continually. All day long. (Think Stevie Wonder.) She has done this since she was a year old. She started flapping her hands around 2 years old. She loves to spin and swing and she’ll rock violently back and forth when she’s mad. She’s always seeking more and more input because she is missing the main way that human beings get their information. Through our sight. She puts everything in her mouth. Blind children typically go through a longer oral stage because of the reason I stated above. This is just one more way to get information if you can’t see it.

None of those things set off any alarm bells though. I knew that was just her blindness.

What DID set my heart racing and began to fill it with unspeakable dread and fear? What one thing lead me to question what was wrong with her?

Why did she stop speaking?

It felt like one day she was talking and the next day she just wasn’t.

What would cause this to happen?

One terrifying word came into my mind.

Autism.

I called the research center for anophthalmic and microphthalmic children. The Albert Einstein Medical Center in Philadelphia. I made her an appointment for an evaluation. They had developed a specific clinic staffed with experts on blindness to determine if our kiddos really were autistic or if their behaviors and characteristics were simply the results of being born blind. Many of our kids were receiving the diagnosis of autism when they weren’t and many of them were not being given the label when they were. That team was supposed to be able to clarify and correct the appropriate clinical diagnosis.

So I flew her to Pennsylvania and asked them the million dollar question.

Was my baby girl autistic?

During the months leading up to that evaluation I began to question, pray, bargain, and plead with a God that I had started to lose faith in. I began to cry and scream at him “You made her blind! You made her physically and developmentally delayed! Don’t make her autistic too! Please! I will do anything! ANYTHNG! Don’t make my baby autistic too!”

I laid in bed at night questioning my very life and existence. I began asking questions that I would never receive answers to.

I wondered why He would do this to her? Why would He do this to me?
Why had my life been so easy before? Why had it become so hard?
When was my nightmare going to be over? When was I going to wake up?
The more I prayed and pleaded…the farther away I drifted.
The more questions I asked…the less answers I received.

I flew Oli to Philadelphia with a heavy heart, a stomach full of knots, and an empty soul.

Where was my God? Would He answer my prayers?

I feared that I already knew the answer to those questions.

Where did that leave me now?

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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.

Airing Out My Bitchies

16 Feb

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 thought “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 3rd 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.

So 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.

Roller Coaster

12 Feb

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Each day came with an anticipation of ways to fill the day with two young children and ended with a feeling that I wasn’t doing enough. My mind was full of contradictions and confusion. I looked forward to going to work, but hated taking care of other people’s babies when mine seemed to need so much. I liked to stay at home with my kids, but I wanted to get out of the house and try to focus on something else. However nothing seemed to be able to tear my mind away from focusing on what I should be, could be, or would be doing if things had turned out differently.

Oli was actually a very happy and easy baby. When she learned to smile she smiled all of the time. She started to coo and babble, giggle, reach for toys, and bounce in her bouncy seat. She seemed to be developing as a regular baby despite her blindness. By the time she was 5 months old and meeting her developmental milestones I wondered if maybe the doctors were wrong. Maybe despite all of her quirks she was actually pretty typical. I still worried about her, but I had a little bit of hope again that her blindness would be her only hurdle in life. I was slightly more comfortable with the idea of her disability and even began to enjoy hearing stories about inspiring blind adults and children. I would think, Yes, Oli can do those things too!

But then I would remember that the specialists had warned me that the developmental gap between her and other children would only widen as she got older. My life had become a series of these highs and lows. I would just reach the top of one peak only to come crashing down the other side.

You see I was on a roller coaster ride and I couldn’t figure out how to get off.

Did You Make Her Blind?

9 Feb

“Bad things do happen; how I respond to them defines my character and the quality of my life. I can choose to sit in perpetual sadness immobilized by the gravity of my loss or I can choose to rise from the pain and treasure the most precious gift I have- life itself.” -Walter Anderson

We ended up not having to wait as long as was predicted to see the geneticist. It turned out that the nurse practitioner I worked with was able to pull some strings and get us in a few weeks after Oli’s second conformer appointment.

After visiting with the geneticist we actually began to ponder the absurd questions that she asked us. Questions that I’m sure have to be asked when a child is born with a birth defect.

“Was there any possibility that Seth and I were related? ”

Was there?

How silly, but in that moment we paused and had to wonder.

I was from Iowa and Seth’s father was from Iowa.

Was it possible?

After thinking about it for a second we realized how crazy that was. Of course we were not related.

“Is it possible that I contracted some sort of disease very early in my pregnancy?”

A few people at work in the NICU had also asked me this. Was it possible that I picked up a bug at work and it made Oli the way she was?

That was an awful question to be asked.

Did I somehow “make” her blind?

I honestly didn’t know. I didn’t think that I had unknowingly transported some kind of harmful virus to my unborn child, but I couldn’t be sure.

Was it my fault?

I was supposed to provide a nurturing environment for her to grow and develop properly. I had obviously failed to do this. Maybe it was my fault?

“Did we have any history of blindness or any other birth defects in our family?”

“No. Not really.”

“Not really? Can you please list everyone in your family who was born different in any way.”

We gave her our family history. Let me tell you, after Oli was born I was looking at everything and everyone as a possible explanation to what had gone wrong. We were listing absolutely everyone with any kind of odd feature, behavior, or characteristic. I was thinking about second cousins who I remembered chewed their food weird at the dinner table, or a distant uncle who talked just a little bit too loud for normal conversation.

My family has a history of bad eyesight. I actually had the thought,

Well, maybe my genes deteriorated to the point that her eyes were so bad they just couldn’t develop.
(Yeah, sometimes my mind went a little nuts.)

Family members also gave us their opinion as to what might have happened.

My step daughter, who was 9 when Oli was born, wondered if her eyes didn’t develop because she was born early. We assured her that wasn’t the reason.

My mother thought maybe it was because her family had decided not to donate my grandmothers corneas when she passed away.

Some people in my husband’s family wondered if it was because I had named her Oliana. Oliana is translated to “oleander” in Hawaiian.

Maybe I had destined her to be blind by naming her after a poisonous flower.

Of course, all of these theories were completely ridiculous. Everyone was just looking for an explanation. That’s what happens when tragedy strikes. People start questioning why?

Why did this happen?
Sometimes there are no answers.

In my heart I knew that I had not caused this. I knew that I hadn’t married a distant relative, contracted a disease, passed it on through bad eyesight, pissed off God, or destined her to blindness with a name.

I knew that it had just happened.

Would she ever see a sunset?

25 Jan

“Through the blur, I wondered if I was alone or if other parents felt the same way I did – that everything involving our children was painful in some way. The emotions, whether they were joy, sorrow, love or pride, were so deep and sharp that in the end they left you raw, exposed and yes, in pain. The human heart was not designed to beat outside the human body and yet, each child represented just that – a parent’s heart bared, beating forever outside it’s chest.” -Debra Ginsberg

The next day the doctors performed a few tests on Oli. One was a CT of her face to determine if she had any eyes or any abnormalities of her brain. Another was an ultrasound of her pelvis to determine if her kidneys were present and normal. And the last was a hearing screen.

It was so hard watching the nurse wheel my baby out of my room that Saturday morning. I knew in just a few hours the results of those tests would be delivered to me and would determine her life, quality of life, or her death. I couldn’t think about the outcome of those tests anymore but, I couldn’t not think about them either.

Would she be able to see her handsome daddy’s face, admire a sunrise in the mountains, or see a sunset over the ocean in her daddy’s beautiful Hawaii?

Or would she spend her life in darkness.

Was her brain normal?

Or would she spend her life confined to a bed, unable to ever care for herself and perform daily activities.

What about her kidneys?

Would they be missing or badly deformed and non-functioning?

Would she spend her life attached to a dialysis machine multiple times a week for hours at a time?

Would I be forced to administer numerous medications with harmful side effects in order to keep her alive?

Was she able to hear her sweet brothers voice when he called her his “bee-bee” and kissed her head?

Was she able to hear how many times I had whispered “I love you” into her ear?

Did she hear how many times I told her I was sorry that this had happened to her?

Did she hear me tell her that I would have offered God anything if He would allow me to trade places with her?

Did she hear me tell her that I wished it had been me that had been born blind and not her?

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