Tag Archives: family

What is it like to have a special needs sister? A 7 year old gives his opinion.

13 Jun

I wonder all the time what it is like growing up as the sibling of a special needs child. My 7 year old son, Kekoa, opened up and answered some questions about life with Oli.

What is the very first memory you have of Oli?
-“I think the first thing that I saw about Oli was that she was blind. Well that, she had ummm…she had no eyes and that was kind of creepy at first.”

Do you remember her getting her first pair of real looking eyes?
-“Ummm..I think I remember. I just saw online that she had the clear ones first.”

What do you want people to know about Oli?
-“I want people to know that just because she doesn’t have eyes, doesn’t mean that she doesn’t know what you’re saying. She understands whatever you say. You should talk to her normal.”

How does it make you feel if people stare at her or say mean things to her?
-“It makes me feel sad. It makes me feel like I’M the person being bullied by those people because she’s my sister.”

What would you say to those people?
-“She’s a normal person. She just doesn’t have eyes.”

What does it feel like to have a sister with a disability?
-“I’m just worried about people being mean to her. Sometimes I worry about her falling down and getting really hurt. I worry about her having to go to the hospital.”

Do you remember the first time Oli had a big seizure and had to be taken to the hospital by ambulance?
-“Yes. I remember daddy telling me to go upstairs. I remember wondering if she was going to be okay. Or was she not. I was just really worried that she wasn’t going to be okay that time.”

Do your friends ask you questions about Oli?
-“Yes. A bunch of times. They ask me like ‘Can she blink?’ I say yes. ‘Why does she have fake eyes?’ I say that people will accept her more because she looks like everyone else. I don’t think it’s very important to look like everyone else because everybody has differences and God just made us that way. That’s the way He wants us to be.”

Are you excited that she started talking again?
-“Yes. Very excited. I think that since she started talking, she’ll start doing other stuff too.”

What kind of stuff do you want her to be able to do?
-“I want her to be able to walk. To have lots of friends. I want her to be able to like do normal things like everybody. I want her to be able to play with me.”

Is it hard at home to have a special needs sister?
-“Sometimes. Because it’s hard to do stuff and concentrate when she’s crying.”

Is it hard because she has lots of therapy and doctor appointments?
-“Well no. Not really.”

Is it hard because it takes more time away from you, for mommy and daddy to help her?
-“Yes. You guys spend more time with Oli, helping her do things, than Ginger and I do. You guys just know more about her than we do. I like to help her. I like to help her walk. I like to hold her hand.”

If you had one wish for Oli, what would it be?
-“I would wish that she would be able to see. And that’s it. I just wish she could see because it would be easier for her.”

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Living within the isolation of myself.

14 May

We moved from Pahrump, NV to Round Rock, TX on October 1, 2009.

By the time we moved I was exhausted. Mentally exhausted.

Living in that desolate island of fear, tears, sand and mountains had completely depleted me. I felt so alone. Although my mom only lived a few minutes away and my husband was with me…I was alone.

I had submerged myself so deeply in self-pity and self-hatred, blame, guilt, remorse, and those constant day dreams of what might have been, I was beyond reach of anyone else. I was alone in a dark, sad, tear-filled cocoon of my own making.

I couldn’t wait to move. I had pushed everyone away. I would talk with my friends, listen to stories about their children, the whole time thinking to myself “You don’t understand. You just don’t understand how hard this is for me.” They didn’t understand. Because I never told anyone. Moving seemed like the best solution at that point. I thought that if I changed my outside, if I changed my zip code, that it would change the way that I felt.

I had convinced myself that it was all because Oli didn’t have enough support. That it was because I didn’t have enough support. It was. But, it wasn’t. Oli did need more help with people experienced in blindness, but I had some support. I just couldn’t see it then.

I had met and made friends with other moms who had visually impaired kids. I had become good friends and remain friends with some of them. None of them were totally blind though. I had led myself to believe that because their kids weren’t totally blind, that they didn’t really understand what it was like.

I had made it US vs. THEM.

I had isolated myself even against the people who knew what it was like. I was looking for all of the differences in our lives rather than the similarities. I think some part of me enjoyed that feeling of isolation. Some part of me liked feeling sorry for myself and enjoyed believing that I was the only one in the world who felt the way that I did. That no one could possibly understand my struggles.

It just simply wasn’t true though.

LOTS of people knew how I felt.

If I just would have stopped for a second and looked outside myself, I would have seen that. I would have seen that I had people surrounding me that wanted to help me. They wanted to understand what I was going through. If I would have made myself available to them…if I would have made myself a little vulnerable…I would have seen that.

I didn’t.

I didn’t when we lived in Nevada and I didn’t when we first got to Texas.

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Leaving a child behind

1 May

After what seemed like an hour, but was more likely only a few minutes, I dared to sneak a glance at my husband. His face was a silhouette against the window of our car. With the sun setting orange behind him I could just make out the corners of his lips turning upwards in a smile.

“Move? You really think we need to move?” He asked, sparing a glance at me and momentarily taking his eyes off the road.

“I do. I think that we really should. Oli’s vision teacher is always telling us how great Austin, TX is. I think we should look into it.” I answer.

“Okay. I’m in. She just isn’t getting the amount of services that she needs. She needs occupational therapy and speech. She needs more physical therapy and orientation and mobility. I agree. Las Vegas, NV is definitely not the best place to raise a special needs daughter. Let me talk to my company and see what they can do. Maybe I could somehow transfer.”

And that was it.

The decision to move my family was made on a hot summer day in August 2009 on the drive back from California after a trip there for my birthday.

There were no arguments and no one resisted the change. We simply decided to move.

Bittersweet tears were shed by my husband. He was happy for Oli, but sad for who he was leaving behind. Moving to Texas meant leaving his two sisters, two nephews, one niece and his mother behind in Vegas. It also meant moving much, much farther away from his daughter, my step daughter Thalia, who lived with her mother in San Diego, CA. She was 11 years old at the time.

I didn’t appreciate then what an enormous amount of strength and courage that decision took for him. What it meant to leave a child and move somewhere where he would only see her once every 6-9 months instead of every month. He made the type of decision for Oli, which I’m not sure that I could have ever made. He made a choice to help one child, who may have needed it more, with the sacrifice of not seeing the other. Their relationship would remain tightly intact via computers and nightly phone calls. Many many phone calls.

And many many tears.

Many tears of sadness and loneliness were, and still are, shed on behalf of Thalia.

Some days he gets lost without his oldest daughter.

Sometimes I wonder if he regrets leaving.

I wonder if he thinks it was worth it.

I’m sure most days he thinks that it was. And then. . .I’m sure there are others where the pain and the sadness are too much. Days where he longs to feel the touch of her sweet embrace and see the warmth of her beautiful smile.

I do know that every day he misses her. Every. Single. Day.

We both do.

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Heartache written on a piece of paper

1 May

Before I move on with my story, I have to write about Oli’s mandatory 3 year evaluation for school. They evaluate her to determine her progress and also to determine whether or not she still meets the eligibility qualifications for services. She’ll be 6 years old on May 10th.

O&M was the first evaluation scheduled to be completed. O&M stands for orientation and mobility and focuses on body awareness, spacial concepts, walking and navigating around the environment as a blind or visually impaired child. As a totally blind kiddo, Oli always qualifies for O&M. Her O&M instructor is absolutely fabulous. She is a wonderful woman and teacher and I really like and respect her. She has been with Oli since we moved to Texas when she only was 2 ½ years old.

I have to tell you that, before I get into the results of her evaluation. Before I tell you how little progress Oli seems to have made in the last 3 years. This is NOT, in any way, a reflection on her teacher.

This is just Oli. This has always been Oli.

You see, progress is slow with her. She does do new things and accomplishes goals every once in a while. It just doesn’t happen very quickly or very often.

It’s hard.

It’s so hard to watch your child work so hard and struggle. To try and to fail. To improve and do something new, only to have it slip away. Some of her new skills have diminished and then disappeared completely. At the beginning of the school year Oli was standing up from the middle of the floor all by herself. She would just stand up and every once in a while she would start walking. Just like any other kid. Then it stopped. It stopped completely and she hasn’t done it at all in 8 months.

Is that skill gone forever? Did she have a seizure that wiped it away? Did she forget how to do it? Did something scare her? Why does she lose these skills so easily?

I don’t know.

That is my universal answer when teachers and therapists ask me “Why doesn’t she do that anymore?”

I don’t know. I don’t have any idea.

I wish I did. I wish I could take a peek inside her brain and figure it out for her. I wish I could just look at her and say “Remember when you did that? Or said that? Can you do it again please?” I wish I had an answer. Something better than, “I don’t know?”

That’s not how it works though. What is the problem for her? Why does she struggle through learning simple things? Why can’t she be potty trained or pull up her pants? Why can’t she remember where her nose is consistently or say hi? Why doesn’t she tell me that she wants eggs for breakfast or tell me she wants to play with the bells? She used to do all of these things.

Why can’t she tell me that she loves me?

So many questions and so very few answers.

Is it her autism, her blindness, her developmental delay, her intellectual disability? What is it?

No one can tell me because they all overlap.

No one has any answers, but everyone asks me. Because I’m her mom. I should know. At least, I feel like I should know.

I’ve never known the most profound sense of helplessness since meeting my baby girl. I’ve never felt so out of control on all things that feel like they need to be controlled.

I’m her mom. I should know what’s going on with her.

But, I don’t. I never have.

I’ve read a few other blog posts written by moms of kids with disabilities and they talk about looking at other moms and being jealous of them and their children. I understand that. I try not to compare my daughter to anybody else’s children, mainly because I did that WAY too much in the beginning, but sometimes…I still do. Not in the uuuggghhh…I hate you because you don’t know how good you’ve got it…way. But…uuuggghhh…Look how easy it is for your kids. I just wish life wasn’t so hard for her…way. I’m jealous of other special needs kids who learn things easier than her or kids that don’t have multiple disabilities. But then I HATE myself for thinking that way because it’s ridiculous. I don’t know that life is any easier for them or any harder for my daughter. There are a lot of kids out there in way more difficult situations. These are things that just should not be compared.

I think sometimes I just want her to get better.

I look at my other two kids and it just all comes so naturally for them. They just learn. No big deal. For Oli everything is such a bigger deal. She can’t see so right there, it’s a whole new ball game trying to teach her. And then her body just doesn’t work all that well. It seems like she wants it to do things and it just doesn’t. She has low tone and poor balance. Her arms are weak. She needs a very long time mentally and in terms of motor planning just to figure out where she’s going and how she’s supposed to get there.

It just isn’t easy.

Reading these evaluations…isn’t easy.

It’s always hard to read the same evaluation year after year.

It’s hard to read “She used to do this…She used to say this…but now she doesn’t.”

It’s hard because I know she’s in there. I know what she’s capable of. I just don’t know why it comes and goes. I don’t know how to make it any better for her.

She does therapy and therapy and more therapy. She gets PT, OT, speech, vision, and O&M at school. She gets PT, OT, speech, and hippotherapy at home. I just always feel like maybe there’s more. Maybe there is that one therapy out there that we’re not doing and that will be the key that unlocks the door.

In my brain I know that it probably doesn’t exist. In my brain I know that we are doing everything.

In my heart? I want to do more.

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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?

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Why I Feel The Luck Of The Irish Today

17 Mar

In the spirit of St. Patrick’s day, Irishmen, luck, and all that, I thought I’d write a few reasons why I think I’m so lucky to be a special needs parent. Now, before you throw up a little from my extreme sappiness and begin thinking that I am THAT mom (you know, the one who tells you everything in life is great, chocolate and strawberry milkshakes, cotton candy, and unicorns). Just know that I didn’t always feel this way. If you’ve read most of my blog you already know this about me. (And if you haven’t read it, please do. If you want to. I’m saying that in my mom tone.) And also know that I don’t feel lucky every single day. Some days are really rough, but who doesn’t have those days? Special needs child or not. My rough days might just involve more Q-Tips, poop, and dinners gone wrong. I just try to remember to be grateful every day because if I forget that…it’s a very dangerous place for me to be in (Eventually I’ll get to that part in my story. Stay tuned. It’s a good story!)

I felt soooo sorry for myself for such a looooong time.

Why did this happen to me? I didn’t ask for this. I didn’t expect to have to have this kind of responsibility in my life. I didn’t want to drag my child to hundreds of doctor appointments, therapy appointments, put her through surgeries, conformer appointments, evaluations, and watch people as they judge her, make fun of her, or feel sorry for her. I also didn’t want people to judge me, question the decisions I made for her, or feel sorry for me.I didn’t want to have to watch my child struggle. I didn’t want to constantly wonder what she was thinking. Wonder if she was really happy. Wonder what she wanted and what her dreams were. I never wanted to feel like no matter what I did, that it wasn’t enough because I just couldn’t fix it for her. I couldn’t make people understand her or love her or treat her with compassion. I couldn’t stop the stares or the questions. And I couldn’t really know how much of it she understood.

I didn’t ask for any of it.

But, you know what?

Neither did Oli.

Neither did she.

So, eventually I got my head out of my ass and stopped being the person that I hated. The one who felt sorry for her and felt sorry for me.

Which now brings me to the reasons that I feel lucky to be her mom. After that very long winded introduction.

1. First off, I feel lucky to be anybodies mom. Seriously. To be in charge of little people who are so interesting and funny, strange and bizarre, naughty and annoying, but who are ALWAYS loving and amazing. It’s so crazy and I cannot believe that it is possible to love anyone as much as I love my children.

2. The people that I have met because of Oli are some of the most influential people in my life. Other moms who share their journey with me and continue to awe and inspire me every single day. They are some of the most courageous, generous, selfless, positive people that I have ever met. Therapists, doctors, outreach coordinators, teachers, parent support coordinators, ocularists….the list goes on. I’m so lucky to have these people in my life. Without any of them, I couldn’t do any of what I do. I need support and sometimes I just need someone to listen. Because of Oli I have all of that.

3. I feel lucky that because of Oli I have something to write about. Bad reason, I know. But, it’s true. Because of her I get to tell our story. I get to reach out and maybe let someone else, whose been where I’ve been, know that it’s okay. They’re not alone. It’s really crappy at first. And it’s hard and it’s sad, but it gets better. It gets so much better. Even if it gets harder because our kids get older, it still gets better.

4. On that note, I feel lucky that I get to share my story with so many people who don’t have a special needs child. Because maybe they’ll read my story and gain a little bit of understanding and perspective. Maybe they’ll read my story and the next time they see a child in public who looks a little different or who is having a meltdown, flapping, shaking, humming or yelling, they’ll think of my Oli. And then they’ll remember what I have said about my journey. How hard it really is sometimes and that all we want is a little bit of compassion. Maybe they will try not to look at the parents with pity or not judge them because they can’t control their kids. Maybe I’ve reached someone out there and it will make a difference in someone else’s life.

5. Most of all I feel lucky to be her mom because…well, because she is just my Oli. If you’ve met her you know what I mean. She feels everything with a fierce emotion that is so rare. I’m glad to be a part of that. I get to see her face challenges head on and never back down. Rarely does she show fear. She trusts me so much that sometimes it scares me. She loves me so much that sometimes it takes my breath away. And she is so brave, strong, funny, curious, and stubborn that sometimes I just look at her in amazement. How can such a big, sweet, phenomenal personality fit into such a tiny little girl. She reminds me every single day what my purpose is in life and allows me to share this bumpy road with her. She forgives me when I mess up, she forgives me when I have to do something unpleasant to her, she forgives me when I allow doctors to do things that are unpleasant, she ALWAYS forgives me. She always just continues to love me. She might be mad for a little while, but then she will wrap her little arms around my neck, pat me on the back, and whisper “Mom-Mom” in my ear. It’s like she’s saying, “I know it’s not your fault Mommy. I know you didn’t ask for this either. I know that you are just trying to do what’s right and are doing what you think is best for me. I love you and I love that you walk BESIDE me and not IN FRONT of me. And I’m really glad that you don’t feel sorry for us anymore.”

And those are the reasons that I’m so lucky to be Oli’s mom.

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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.

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Seth Was On The Teacups; I Was Still On The Tornado

21 Feb

“Home is where you are loved the most and act the worst.” ― Marjorie Pay Hinckley

I remember that first year of Oli’s life being full of incredible pain and sadness. I remember wishing that she was older so I could just get past all of those feelings. I thought that she would just hit some magical age and all of those feelings would just disappear in an instant.

“If only she was 6 months old…”

Then she turned 6 months. Nope. The pain was still there.

“If only she was 1…” Nope.

I couldn’t understand why I just couldn’t get over it?

Seth made a comment when Oli was about 6 months old that he was so glad the first 6 months were over because he felt so much better. The roar of our wild roller coaster ride had dulled to the excitement of the Teacups.

I looked at him and smiled.

“Yes. Me too. I feel the same way.”

I didn’t feel that way at all. Not one tiny bit. I felt exactly the same as the moment when the doctor said she didn’t have any eyes.

I…was stuck.

I feel like I missed enjoying Oli as a baby because I spent every waking moment worrying about her.

When she turned 1 and it was time for her to get her eyes I thought that, that would be the moment I had been waiting for. She would get eyes and everything would be right with the world again.

Nope. It didn’t happen then either.

Don’t get me wrong, it helped. Once her eyes were painted, I didn’t feel like I had to hide her in her car seat when we went out to avoid the stares and the comments.

It made it a little bit better, but it turned out that it wasn’t her appearance that was bothering me. She was beautiful either way.

The first couple of days after she got her first pair of painted conformers was a mixture of highs and lows.

(Her first pair fit perfectly and were not crooked.) The moment Beverly put them in and turned Oli around to face us was incredible. Suddenly my girl had perfect, beautiful blue eyes.

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She had eyes.

We couldn’t stop staring at her, turning her this way and that. Examining her face from every possible angle. Oli had a funny look on her face, feeling the emotion in the room.

“Oh, Oli. Look at you! Look at your eyes baby! You’re so beautiful!” I gushed over her and cried with emotion.

We got back into the car and started the drive back to Las Vegas. Oli was still in a car seat facing the back seat so I couldn’t see her face when I turned around to check on her. I found myself making up excuses to stop the car. Suddenly I had an attack of the munchies, the thirsties, and needed 10 bathroom breaks on the drive home. Of course I had to take Oli out with me. (Even though Seth was still in the car.) I would get her out of her seat, pick her up, and then spend 5 minutes just staring. It was an amazing day.

The next morning the rush of that high faded and I began my descent to another low.

They had given her a pair of eyes, but she still couldn’t see me with them.

My girl still couldn’t see.

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Why Are They Crooked?

20 Feb

“One of the reasons I blog is because I can’t afford
to pay for proper therapy.”

Once we finally arrived in LA it was one of those hurry up and wait moments. After what seemed like hours but, really was only 20 minutes, the receptionist called Oli’s name.

“Have a seat and Beverly will be with you in a little while.” she tells us.

A little while? I was practically bursting from my skin with impatience.

The ocularist, Beverly walks through the door a few minutes later.

We started out with Beverly’s partner, Steven Haddad but transferred to Beverly after a few visits. She was working more on different custom made conformers although Oli’s had never been custom fit. What I mean is, no mold was taken of her eye sockets and then a conformer made based on the mold, like it is now.

I would have preferred to stick with Steven.

Beverly was nice, but she would just never listen to us as parents. She was a rough spoken, tall, blond, older woman who liked to think that exactly what the prosthetic looked like or how it was positioned didn’t matter.

I didn’t really care at first when it was a little crooked and never seemed to sit straight. After a few appointments, I started to get annoyed.

“As long as it doesn’t bother her, it doesn’t matter that it looks like one eye is looking at the ceiling or that one is turned in. The point is that it is bigger and it’s in.” she would tell me.

Yeah, Beverly it does matter because it bothers me.

I didn’t want her eyes to look crossed or rolled toward the ceiling.

She never listened though. I should have been more vocal about it looking right.

After all, we were driving 6 hours one way and spending about $1000 on each eye.

I guess I just didn’t want to make a big fuss and trusted that she knew best because she was the professional. This was a common theme in the first few years of Oli’s life. I just trusted that everyone treated and loved Oli like I did. I thought that if they were teaching or caring for her they would give it 100% each and every time.

Now I’ve learned that, that isn’t always the case. Most of the time it is, but I’ve learned to trust that nagging feeling in my heart that tells me something isn’t as it should be.

I trust my abilities as her mother and know that I will always do what’s best for her and if it differs from what someone else is telling me, I have the right to say no.

It is my job to always give 100% because it’s not always the job of everyone else even when it should be.

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See how her right eye looks like she is looking at the sky.

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Fasten Your Seatbelt, This Road May Get Bumpy

19 Feb

funny-mom-quotes-brain-cells-for-kids

It was sometime around this point in Oli’s life that I decided I would learn braille. I mean, why not, right? My daughter was still in diapers, had about 4 teeth, could say one word and had just learned to sit up. Why wouldn’t I want to learn braille so I could start teaching her immediately something that blind kids don’t really learn until they are about 5 years old(give or take-I’m not completely sure because Oli hasn’t even started it yet. So glad I ran that gauntlet 5 YEARS AGO!!).

That picture of the crazy mom at the top of my blog, that is cartoon me. She has blond hair because what suburban house wife/stay at home mom doesn’t picture herself as a smoking hot blond bombshell. Or is that just me? Maybe I watch too much reality TV.

I love how chic it is to say “housewife” now. Much better I say that, than tell people I don’t have a job or tell them I take care of my 3 children…all day…everyday…and I never get out of the house…or put real clothes on. . .or have any friends…

See how she’s holding her head. That’s me totally flabbergasted by this whole crazy, loopy, bumpy path that is the road of a mom with a child with disabilities.

Before I had kids my road looked like this:

road 1

It was smooth, newly paved, no potholes and was 100% safe. I didn’t even need a seat belt.

When I decided to have kids it looked like this:

road 2

Highs and lows, a few tiny pot holes, but I could still see where I was going. There were beautiful flowers by the side of the road and sunsets and rainbows in the distance. (I’ll bet you didn’t know that I am also an artist. I will now add that to my resume of blog writer, magic Q-tip eye ball manipulator, Binky locating expert, and projectile vomit catcher.)

After Oli was born my road started looking like this:

road 3

Most of the time I can’t even see where the hell I am going and have no clue where to turn next. I just bump along, twisting, crashing through potholes the size of Connecticut, and try to avoid the boulders falling on my head. A 5 point restraint race car driver seat belt is required for this road. It gives me a terrible headache. That’s also why I’m holding my head.

And I’m holding it because I get crazy ideas like learning braille when my baby is 8 months old and I run with them full force, balls to the wall. It makes my head spin so I’m trying to hold it on so it doesn’t fly off while my mind is traveling at 500 million miles a minute.

imagesCA5W00WF

I might have a few issues, but I did learn un-contracted braille that year:)

I probably get my neurosis from my mother. She learned un-contracted and contracted braille that same year. Along with the numbers, math, and maybe music? Basically the whole shebang of braille. She was ready to open up her own little braille school and teach all the little blind babies of the greater Las Vegas valley.

Never underestimate the love that my mom has for her grandchildren.

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