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Thursday, March 28, 2013
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 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 laying 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 at all, 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.
What else can you do?
Monday, March 25, 2013
You want doughnuts for breakfast? You better run it by mommy. Ask her what she wants.
You want to wear shorts to the park? You better ask mommy if she's cold.
You need to go potty? Go tell your mother.
The tooth fairy forgot you last night? Go tell your mom. She has her on speed dial and takes care of all complaints.
Even when they don't know that I am in charge, I am in charge.
Like when my husband wants to grow a beard. He doesn't ask me if he can grow a beard. Of course not. He's a grown man. He can do as he pleases.
But, my kisses become less frequent. I pull away and scratch my face after a kiss and he says, "Oh. Does my beard bother you? Is it too itchy for you?"
"Yes. Kind of." I answer sweetly. The truth is, although it is itchy, it's more that I just don't like it. So, he shaves it off. See. I'm the boss without him even knowing it. (This will be the post that I don't tell him I wrote;)
So...I need a sister wife. All of this bossiness is tiring. I need a break. At least a lunch break.
Everyone says, "Well you just need a mommy helper."
What in the hell is that? That sounds like it would be someone I would have to pay. I don't have the luxury of paying someone. That's why I need to convince someone to marry us. Or marry him. Or however that works?
I need someone to be me for free. But I need to omit the whole sex, love thing. Because as I stated above that would be weird. But I need someone who does everything else. Basically I need someone to invent and legalize human cloning. Then she could do it all! I think I have a better chance of getting a sister wife than I do getting a mommy clone, so we'll go in that direction first.
Let's just pretend for a minute that that kind of person actually existed. Let's pretend that I could convince someone to volunteer for this position. This is what the job would entail. Oh, wait. Let's not call it a job. Because that would be false advertising. I have no intention of paying anyone. I don't get paid. Why should they?
Hey you. Are you interested in being my sister wife? Have I got a life for you! You would get to take care of 3 beautiful children and a very handsome husband. But, don't get any ideas. You're not here for that. You must be willing to give up all interest in sexual relationships and love. Don't look at me either. I cannot stress those points enough.
Volunteer position available. Be a sister wife to a nice, funny, sparkly, exhausted mommy.
Description of duties that you would be responsible for:
1. You would be responsible for all butt wiping duties. All poopy diaper changes. All potty responsibilities would fall to you. I'll give you a little advice. Don't be in the shower when needing to wipe the 3 year old, Ginger. She hates that. You must be dry and make sure that you are also clothed. Oh, and the 5 year old,Oli likes to be touching someone when she goes potty. You have to sit in the bathroom next to her when she goes. If you don't she will get off the potty and play in it and then find the sink and turn on the water and go nuts. The entire bathroom will be soaked in under 30 seconds. If that happens don't look at me. I told you. Also, you can't sit in there with Ginger. She will tell you to get out. You can't even look at her if she's pooping. Unless she's peeing. Then you have to stay in there. Stay out of there with the boy,Kekoa. This is for the safety of your own nose. Unless he hollers that he needs help wiping. Which he does sometimes. If you choose to save your nose and not go in there you are responsible for the subsequent skid marks and remedying the ensuing butt itchiness. Complicated isn't it. You should take notes.
2. You would be responsible for cutting all crusts off sandwiches, washing all fruit, peeling all oranges and apples, opening all Gogurts, applesauce's, and juice boxes. And DON'T leave those little straw wrappers or Gogurt ends lying around the house for them to stick to me later. This will end in immediate divorce.
3. You would be responsible for watching Nintendo DS games and show enthusiasm when the boy says he did something amazing on his game. You must be interested and never allow him to catch your eyes drifting away from the screen after watching 10 minutes of him crashing a car into a side rail. This makes him question your love and pouting will ensue.
4. You must find 7 year old boy made up jokes funny and laugh hysterically when he makes you say the word "underwear". He thinks he is so funny and if you don't laugh he will also question your love. Basically be very careful around the boy because he is sensitive.
5. You would be responsible for attending all tea parties that the 3 year old throws. You must dress her up in 5 different princess outfits and wait patiently while she decides which one looks most beautiful on her and then help her to choose a pair of shoes. And don't suggest that you put one on too because she doesn't like anyone else to steal her thunder.
6. You would be responsible for cooking all dinners. They must be gluten free. Good luck with that. You must not be worried when the boy says things like he might die if he has to eat gluten free again and that gluten free food is killing him. He won't die. I promise. If my cooking has not caused a serious illness or death yet, yours certainly won't either. You are also responsible for packing all school lunches. Talk to the boy first. The boy is picky. You can't put graham crackers, or chips, or anything else not approved by the school lunch lady who is responsible for handing out Go-Food tickets during lunch time. If you pack non-approved food items he will blame you and say that you are ruining his life. If he doesn't get a Go-Food ticket at lunch that day it WILL be your fault. The boy will tell you this repeatedly.
7. You would be responsible for ALL bedtime routines. Basically, when that clock strikes 7:30 consider me out. I can't help you sister. Good luck taking Ginger back to bed 10,000 times. Think of it like stair climbing exercises. See! No need to join a gym. Bedtime will give you quads of steel! Also, you can develop upper arm strength while you wrestle Oli every night. She either doesn't understand the words "Time for bed." and "Go to sleep." Or she has selective hearing like the rest of my children. You should work on that. Teach her to go upstairs, lie in her bed, and not flail around like a fish out of water.
8. You would be responsible for all toothpaste mishaps. You must be an expert in getting it off the walls, ceilings, floors, sinks, towels, and clothing. This responsibility is daily. If you can come up with a way to get the kids to keep the toothpaste inside their mouths and only on their toothbrushes...you, my friend, are a genius! If you can do that I WILL pay you.
9. Laundry. Duh. Laundry. You would be responsible for that. You must organize the children's drawers daily and the shirts and pants must face the same direction. You would also be responsible for cleaning up the husbands closet every day. Good luck! It looks like an explosion of pants, shirts, shorts, and coats took place. We are engaging in closet war fare here. Be prepared!
10. Your final responsibility would be getting Oli ready in the morning. You must wake her up and get her off to school. I will warn you, sometimes you may need personal safety equipment. I suggest goggles and make sure your hair is in a ponytail. If not she will let you know that she is not happy about this morning waking up obligation by yanking your hair and clawing at your face. Don't waste your time with niceties and warm words. Get that girl on the potty, provide her with milk and then back away. You better have her breakfast ready too. If not...well, just don't EVER let that happen. You may not survive.
I reserve all rights to divorce without reason. If I feel like my children love you more or I miss out on the tiniest moment because you are there and I am not, watch out lady! I'm the only mommy who gets to love them, kiss them, cuddle them, make them feel better, attend all of their school functions, and all of the other great parts about being a mommy. Basically, you are just there to do the dirty work. Hey. At least I'm up front and honest about it!
See! I can make this sister wife deal work! Although, I'm not sure who would volunteer for this?
Thursday, March 21, 2013
In the last post I talked about how the crazy, insane nurses at the hospital just let me walk right out of that hospital with my first baby right after he was born. They didn't come and inspect my house, run a background check, or check my mommy credentials. They didn't call any of my references...nothing. They just let me take him home.
They just assumed that I would know what to do? That I would figure it out? What the hell? Where was his manual?
AND THEN I HAD OLI!
And she had special needs! She was BLIND!
Oh my God!
After I had her I thought FOR SURE they would tell me exactly what to do. Surely SHE would come with a manual. Surely someone would tell me how the hell to do this whole thing.
Didn't they have these people called Social Workers that worked in the hospital. Weren't they supposed to come in and help me to clean up some of this emotional mess that had cluttered my brain. Wasn't that what they were trained to do?
I asked to see a social worker before I left the hospital. I asked multiple times to see one. I never did. Was she off, was she gone, was she too busy?
I mean, my whole life was falling apart. Didn't they have someone at the hospital who could talk to me? Tell me what I needed to hear. Comfort me. Listen to me.
I guess they didn't because no one ever came. They just checked her out medically, watched me strap her into her carseat and then sent me out the door.
I walked out of those double doors that day without the faintest clue in the world of what to do next. I didn't know what to think, what to feel, who to talk to...I just didn't know.
I know that many of my friends who read this work in the hospital. Many of them are nurses in the NICU and the PICU.
YOU GUYS can be that someone.
YOU GUYS can help.
Many of my friends have special needs children. Many of them have been down this same road.
YOU GUYS can be that someone.
YOU GUYS can help.
If you work in the hospital, LISTEN to your patient's parents. ASK them how they are doing. INVITE them to be honest with you. KNOW that they are probably NOT okay. Know that they are hurting. They are scared and they don't know what to do. COMFORT them. Treat them with compassion. Treat them as PARENTS. Don't be annoyed if you have to repeat something 15 times. Sometimes it takes a very long time for things to sink in. Don't be annoyed if a mom can't seem to get it together and is overwhelmed. Don't be annoyed if she won't stop crying and is a mess. Don't be annoyed if she hovers and asks to many questions. She's scared. She doesn't understand. Don't be judgemental of the mom who seems nice, but doesn't seem to visit enough. Maybe it's just too much. Maybe she just needs time. Don't judge the mom who never leaves the bedside. Don't be upset when she seems to criticize and critque everything you do. She has lost control of her life. Nothing makes sense anymore and she is just trying to control whatever she can.
Parents of special needs kids. You guys are so valuable. You guys can do so much. Get involved. Meet and connect with new parents. Talk about how you felt, what you went through. Talk about how it is hard, but that it gets better. Give them a light at the end of the tunnel. Nothing means more than to speak with another family who knows this road. Who has been where you have been before.
I have found so much healing and emotional comfort in talking about what it was like for me. When I meet another mom and she tells me what she is feeling, there is no better feeling in the world then when she says something that I have felt. Nothing feels better than when I say "Yes. Yes. I felt like that too." And then I see her eyes light up with tears because she has found someone who understands.
We all need someone. I wish that I would have found someone right away in the first few days after Oli was born. I wish that more people in that hospital would have validated my feelings and told me that it was okay. That is why I talk about how important that one nurse was. My labor and delivery nurse who came into my room after Oli was born. She was the only person there who had the nerve to talk to me about how I was feeling. Everyone else saw my tears and then walked away. They walked away from me and left me alone with my tears. With my grief, questions, fear, and anger. Although she couldn't help me, she at least said something. At least she asked me how I was doing.
Be the difference in someone else's life.
Be a shoulder to cry on.
Be that comfort.
Don't walk away.
Don't be annoyed.
Make a difference.
You really can make a difference and I guarantee you, that family will NEVER forget it.
Did you know that when I was in college I wanted to adopt a puppy?
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?
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!"
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.
Sunday, March 17, 2013
Wednesday, March 13, 2013
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.
I normally don't answer calls labeled unknown and let them go to voicemail, but on that particular afternoon I answered it.
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.
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.
Tuesday, March 12, 2013
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 a long time 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.
Sunday, March 10, 2013
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?
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."
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 child birth 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.
Friday, March 8, 2013
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.
Tuesday, March 5, 2013