Archive | March, 2013

Why Do Our Children Do This To Us?

30 Mar

1. This: When you return home from grocery shopping and have your arms full of grocery bags, the onslaught of requests will begin. BEFORE your shoes are off and the bags are set down. “Can you get me juice? I need a snack. I’m STARVING! Can you wipe me? Here mommy. Take my booger.”

2. And This: When you wear a black shirt to hide the stains from sticky, nasty kid hand smears, someone will throw up on you. You just can’t hide that. No matter what color you’re wearing.

3. Never This: When you wear a white shirt. . . Lol! No sane stay at home mom with little kids ever wears white!

4. And This: You’ll find yourself arguing with a 3 year old about things like why she can’t put picked boogers back into her nose. “But mommy! You told me not to pick my nose! I’m not picking the boogers! I’m putting them back in!”

5. What About This: As soon as you drift off to sleep. . .finally. You will hear a little voice in your ear. “Mommy. Are you awake? I’m scared. Can I sleep with you?”

6. Yeah This: There is no sleeping WITH you. That would imply that both of you are sleeping. They are sleeping BESIDE you. With their feet in your face and their butt poked into your stomach.

7. Always This: You will wash their favorite sheets, get them put nicely on their bed, put them to sleep. . . and they will pee. They will pee the bed every. single. time. And then demand that you wash them again immediately. Because those are their favorite ones.

8. And This: You’re planning on going out somewhere. You make your kid go to the bathroom 5 minutes before you leave. And then you make them go again 1 minute before you leave. You arrive at the store or restaurant or park which is literally 3 minutes away from your house. As soon as they step out of the car, “Mom. I have to go potty! Now! It’s an emergency!” What? Didn’t we just do this? It doesn’t matter. You can try restricting liquids for hours before leaving the house. They won’t pee for DAYS at home. As soon as you are out in public. . .Whoosh! Open up the faucets. Let the pee fest begin.

9. Seriously! Wth? This: The phone. The PHONE!! Why must they torture us while we are on the phone? My children will ignore me for hours. “Go do your homework.” Nothin’. “Stop fighting with your sister.” Nothin’. “Clean your room.” Silence. The phone rings and suddenly I’m the most popular person ever. “Mommy. Oh mommy. I HAVE to tell you a story. Yesterday at school Johnny had a red pencil but really wanted a blue one so he was sad and did you know that one time when I was 4 it snowed and do you remember that you didn’t let me go out and play in it and I’m still really mad at you and I have to poop so I need you to stay right here because I may need help wiping and keep listening because I still have soooo much to tell you and. . . .” Aaggghhh!!!! Where are their mute buttons?

10. Finally This: When you’re sick they will do all of these horrible things plus a thousand more.

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?

They wouldn’t let me adopt a puppy, but they gave me a baby?

24 Mar

This whole pregnancy, motherhood, taking a baby home, and child rearing situation in our society is whacked!!

Did you know that when I was in college I wanted to adopt a puppy?

Yep.

I lived in a little duplex with a few girls and I wanted to adopt a Boxer puppy from the local Boxer rescue society.

You know what they told me?

No.

Nope. No way in hell we are letting this young college girl, with no yard, a small house, who is not home all day long, adopt one of our cute, precious little puppies. No way lady!! Come back when you graduate, are more responsible, have 3,000 square feet of living space and at least a yard big enough for the dog to take a proper dump in.

They grilled me like they were from the FBI and I was on their Top 10 Most Likely Not To Take Proper Care Of A Puppy List. They wanted to make a home visit. I had to answer a bunch of questions. I thought they were going to ask me for a urine sample and then hook me up to a lie detector.

After I failed and they deemed me unworthy of caring for one of their dogs, I was kind of relieved. I mean, who can handle that kind of pressure? I was too scared and they intimidated me so much that I became convinced that I could not care for their puppy. Maybe there was so much more that goes into the proper raising of a good, respectable, descent, loving, nice puppy that I had not considered. Maybe I would mess it up and it would turn into a Beggin’ Strips addicted, too lazy to fetch, dumb, can’t even walk on a leash, toy stealing, co-dependent dog that I would be ashamed to take to the dog park.

People at the dog park would look at my dog and then think “Well that dogs owner clearly should never have had a dog. Look at him! Sniffing my dogs butt like that. He didn’t even ask if he could play with Fluffy’s ball! He just took it and ran away! Where is his owner? Oh, there she is. Of course. Young. She probably isn’t even home all day to train him properly. She probably just gives him treats when ever he wants and never taught him to sit. Look at her. On her phone, of course. She’s probably wasting time of facebook. She doesn’t care about him. What kind of people gave her a dog? Didn’t they do a background check? Did they even visit her home and make sure that she was capable of taking care of a dog? Obviously not. People like THAT just should not have dogs. Hmph…”

You know what they told me when I gave birth to a baby?

Okay! Time to take him home!

What? Don’t you need to check my pee? Make sure that I’m not hopped up on crack? Where’s the lie detector? I didn’t really weigh what I told you I weighed before I got pregnant. I lied. If I lied about that maybe I lied about more. What if I don’t have a big enough house for a baby? You should know that I don’t have a yard. Nope. No yard. Apartment liver here. Isn’t there some sort of rule that you can’t live in an apartment if you have a baby? Don’t you need to make a home visit? Make sure that I baby proofed it correctly. My husband put together most of the baby furniture, but I did try to help him and put some together myself. You may need to come check it out. I’m not so good with directions. It’s entirely possible that the whole crib will just come crashing down one day. Don’t you want to know what brand of baby formula I intend to feed him? What if I choose a cheap, off brand? Surely you wouldn’t let me take him home if I just choose any old formula and didn’t research it. What about clothes? He’s a boy. What if I choose to dress him like a girl because I’m weird? How do you know I won’t make him wear outfits full of teddy bears and give him a complex later? What if I choose to put a blanket over him at night? What if I let him sleep on his tummy? What if I put him in a Bumbo seat on the table and then leave to go to the bathroom? What if I have no money in savings? What if I never even thought about where the money for his college will come from?

No one is interested in learning these things before you let me take him home? What if I mess him up so badly that if I do end up saving enough money for college he has to spend all of it on therapy?

The ONLY thing I had to have to take my son out of that hospital was an outfit and a car seat. And the outfit was optional.

No one asked me ANY questions. I begged the lactation consultant to come to my house to make sure that I was doing it right. I called my mom hundreds of times in tears certain that I was doing it wrong. I called my husband even more in tears because my baby was nothing like the babies that I had taken care of in the NICU. He did NOT sleep for 3 hours and then wake to be fed. He wanted to eat every 1-2 hours which totally threw me for a loop. He was not supposed to eat that often. Didn’t he know the schedule? We were on a schedule here! He wasn’t supposed to want to nurse for 45 minutes. 30 minutes was the maximum he was allowed. That was how long his lunch break was. He quickly informed me that he did not agree with this allotment of time. Our whole first month was me trying to set rules and schedules and him crying and breaking every rule. He never followed my schedule.

He cried, I cried, and my husband laughed.

“Relax. Relax. He’s going to be fine. You need to just calm down.”

“Don’t tell me to calm down. Don’t tell me to relax. You don’t understand. Just because you’ve had a baby before doesn’t make you the expert.” I was ready to rip his head off when he mentioned my step daughter’s name.

Didn’t he understand what a big deal this was? Didn’t he know that in the past I was unqualified to care for a puppy? I never told him about that. I was afraid that he wouldn’t want to have babies with me. “Well, I can’t have babies with HER. They wouldn’t even give her a puppy She would mess our kid up FOR SURE!”

Yep.

Our society is whacked.

NO PUPPIES FOR YOU!

But we are handing babies out to every neurotic, crazy, young, under qualified, terrified new mother on the block.

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.

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.

I Suck At Being Pregnant

10 Mar

My baby, Ginger turned 3 years old yesterday. 3!! I can’t believe she’s not like 20 by now! It’s almost hard to believe there was a time in my life that I didn’t want one more baby.

The day after we found out that Oli was blind, I turned to my husband and said “Well that’s all folks! We have hit our limit! Time to turn in our baby making equipment.”

It’s hard to remember a time when Ginger wasn’t just hanging around the house, laughing, singing, and trying to be the center of attention.

When your baby turns 3 I hear that a lot of people get asked “Are you having any more?” I only hear these things because I have NEVER been asked that question. Rather, my family pleads, “Please. For the love of God. Pleeeeaaaase don’t have any more!”

You think it’s because I have Oli right?

Nope.

It’s because I suck at being pregnant.

I mean I TOTALLY suck at it!!

I’m uncomfortable and sick and my back hurts and I’m grouchy and then I’m happy and I cry a lot and I’m tired and I’m paranoid and then it starts to feel like things are going to just fall right out of my girl parts and then I just start bitching at everyone.

Every once in a while (like maybe once every pregnancy) I love it. When the baby kicks I think “Wow! This is the coolest thing ever!” But, then I get kicked in the ribs or down in the no-no region and it feels like a foot is going to poke through down there and then I’m back to “Nope. This is horrible.”

I know that there are going to be some moms that read this and think “Well, I just don’t understand what she is talking about. I love being pregnant.When I’m pregnant I feel like I’m floating on air and riding on a unicorn surrounded by butterflies. I don’t even mind being sick and when I throw up I think that it’s amazing because it’s like I’m throwing up a little bit of heaven wrapped in nature’s love.”

Blahhhh….

Those moms might want to stop reading this post at this time because I’m about to bitch about it a whole lot more.

And then…then… you’re expected to give birth to them. Like being pregnant wasn’t torture enough, then you have to get them out of your body.

Oh. My. God.

It’s like something from a gruesome horror, alien, science fiction movie.

I had my 3 babies naturally. And by “natural” I do not in any way, shape, or form, mean that I had them drug-free. Oh HELL NO!! That’s just crazy talk. However, there did not seem to be enough drugs in the world for me not to feel completely mortified each and every time.

I mean that my doctor forced me to have them come out of my…you know where. (I hear that a C-section sucks even more so I’m glad that I didn’t have to do that.)

Before I had my first baby I was hoping that there was a way that I could get my doctor to just knock me out completely, do whatever he had to do to get the baby out without my knowing how he did it, and then just wake me up with a beautiful little baby in my arms.

Apparently they no longer birth babies this way and my doctor was in no mood for accepting my sobbing pleas or my attempts at bribery.

Soooo….I found myself at 38 weeks pregnant with my first child, lying on a hard table with wings attached to it, my legs propped up in the wings, exposing my nether regions to the entire audience, with a big Ziploc baggie thing under my bum, staring terrified at my doctor who was wearing a pair of safety goggles, SAFETY GOGGLES!, and a big hazmat looking plastic mask.

OH MY GOD!

Just WHAT is about to happen?

I vowed right then that I was NEVER going to do this again.

But, I became a mom moments later so my forgettery kicked in. 17 months later I found myself in the exact same position thinking the exact same thing.

I’m never doing this again. How did I forget this part? This is awful!

It’s a good thing that childbirth comes with a quick forgetter when it comes to that part.

Otherwise my son would be an only child and I would be missing the other 2 absolute best, most wonderful parts of my life.

A Phone Call I Won’t Forget

8 Mar

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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

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Oli’s Prosthetic Eyes

6 Mar

Today Oli’s daddy drove her to Dallas to get a new pair of eyes. Every 3-6 months Oli sees her Ocularist, Randy Trawnik, and he makes her a bigger pair. Because she has anophthalmia (missing eye) on the right and microphthalmia (little eye) on the left, her entire eye structures on both sides are underdeveloped. The goal of the prosthetics are to increase them in size each time she gets new ones. It therefore stretches out the sockets and it makes the eyes bigger. Her left eye is almost at normal size due to intensive conformer therapy (I use conformers, painted conformers, and prosthetics interchangeably)

Here are some pictures of Oli’s prosthetic eyes. If anyone has any questions about them, please ask. I’d love to answer any questions you may have.

These were some of her first peg conformers. Remember “OMG! What did you stick in her eyes!”? Well, these were the awful ones prompting that response from people.

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This is one of the first painted conformers that she got. Only the iris was painted because we needed to leave the rest clear just in case she had any light perception. Until we were absolutely sure that she didn’t it stayed clear. Now we know that she doesn’t see anything at all so the whole thing can be painted.

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These are some of the last ones that her Ocularist in California made her before we moved to Texas. They were getting really thick because the socket was stretching so much and it became deep. The conformers had to fill most of that space so they wouldn’t fall out. Also because they still needed to push against that tissue at the back of her socket so it would continue to stretch. She eventually had a surgery last year and she got an implant in that right eye. Now the conformers don’t have to be so thick.

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These last pictures are of her custom fit prosthetics made here in Dallas. Her Ocularist puts her to sleep once a year and takes molds of her eyes so he can make them fit exactly in the shape of her eye.
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