This site is moving!!!

Hi! How are you? I'm good thanks! So I'm moving this blog site over to another blog site at wordpress. If you don't blog this means nothing. It may appear that I'm just showing my Shannon randomness, which I am, changing it all up, which I am, being difficult, which I am, for no reason, which I'm not.

At wordpress I can tag my posts and it's easier for people to find me.I've gained a lot of followers over there. Plus I have pages at the top of the wordpress site which tell readers a little bit about the blog, Oli, and myself.

That way when they stumble into my crazy nonsense ramblings they can be all "What is this? Who is this crazy lady and what is she talking about? Oh! Here is a menu with pages that tell me all these things! Oh! Now I get it! I shall follow this brilliant writer!"

Ok. That may not be how it always goes, but I can dream right?

So. . .I moved.

You can find me at www.mommyhasissues.com  now.

I've been updating both blogs, because I didn't want someone to lose me and stop reading, but it's getting exhausting. So now I'll only be writing there. I hope you find me!

By the way, my brother will eventually just reroute this whole thing so when you type in www.sweetoliana.blogspot.com it will automatically take you to www.mommyhasissues.com.

Sweet!!

My bro's a computer genius and awesome!

See you soon!

This card pisses me off!

 

This post has been brewing for a while.  I had to write a little something about this card, or cartoon, or blasphemy, whatever you want to call it.  Let me just tell you, this picture PISSES ME OFF!

Aaahhhh! (Imagine me yelling at my computer screen) <---This is my frustration with this gem every time I see it float past my news feed on Facebook. And I have seen several versions of this one. I can't take it anymore! I can't keep my mouth closed any longer or I will start banging my head against the computer screen, rendering myself completely incapable of complaining about random things that are annoying me. 

Really?

Your ONLY special need is to be loved?

Ummmm… no.

NO!!

No it’s not!

I’ll tell you why it makes me so mad.

It completely and totally minimizes all that MY special needs child has to go through to live in this world. My blind daughter who has to navigate around in the dark in a sighted world. My non-verbal child who has to try to be understood silently in a world full of language, subtle communication, and written words. My daughter has to survive and thrive in a world that doesn’t always understand or like people who are different. People who don’t have time for, or an understanding of, or compassion, or empathy, or a sense of humor, or many more things that are needed to understand, love, and appreciate a person with autism and other SPECIAL NEEDS.

It completely and totally minimizes all that WE have to go through as special needs parents. Her only special need is NOT just to be loved. It’s a whole lot more. All children need love. That one’s easy as a parent.  I always love my kids.

She has specific special needs.

That’s why we call them special needs kids. Otherwise we would call them regular needs kids right? Or normal? No. Not normal. That’s a setting on the dryer.  Vanilla? Plain? Average? Non special needs? Neuro typical? What? Kids. I have my kids. 3 of them. Or 3 children and one of them has special needs.

She has many more special needs other than just to be loved.

She has seizures, she takes a bunch of medicine, she doesn’t walk very well, she needs a walker at school, a walking wand, my hand. She’s not potty trained yet, she doesn’t talk, she can’t see, she has epic meltdowns, she doesn't sleep well, she has stomach issues, she has to eat special food, she needs special therapies, special equipment, special people in her life who appreciate all that she CAN do and all that she is CAPABLE of doing in the future.  She has enough doctors, teachers, specialists, therapists…ect., to populate a small country. Sometimes I feel like I am running my own country. I am a dictator here in Oliland.

This minimizes all of the people in her life who work so hard for her. If we just said “Oh. Her only special need is to be loved? Great. Job accomplished. Pass me an award. We did that in our first 5 minutes with her.”

It’s so much more than that!

It’s okay to acknowledge that our kids are different. That they need different ways to help them learn and live and love and grow to be amazing people.

And it REALLY pisses me off that they use the word only in front of the word special needs. Don’t even get me started on that one.

Only? Only!!

NO! Wrong!

You are NEVER allowed to use the word only and special need in the same sentence.

Never.

Something that I don't talk about.

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 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.

Because really?

What else can you do?

Who wants to be my sister wife?!

Okay guys. I couldn't help myself. I HAD to write a post about my need for a celibate sister wife. ( I have been posting on my facebook page about this.) Oh come on. Like you've NEVER thought about it! Notice I used the word celibate. Yes. I'm not into any of that open marriage, freaky, kinky, sex stuff. I don't like to share ANYTHING. So I can only assume that I would not like to share my husband. However, I would like to share my kids, house, cooking, doctor appointments, therapy appointments, driving and all other mommy duties with someone else. As long as I remained THE BOSS. Yep. You heard me. I am the boss of my little corporation that I run here.

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.

All me.

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?

You Can Make A Difference!

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.
Don't judge.

Make a difference.
You really can make a difference and I guarantee you, that family will NEVER forget it.

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

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

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

"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.

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.

I Suck At Being Pregnant

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 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.

A phone call I won't forget

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 2^nd birthday.

We were having some family and friends over to the house to celebrate Oli’s special day the day before her actual birthday. 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 at 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 her 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

 

 

 

 

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

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

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

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

Crap.  I lost her.

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

What?

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

Are you sure?

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

No?

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

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

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

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

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

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

Wait!

No!

I don’t want to be in this nice room!

This looks like a “bad news room”!

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

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

 

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

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

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

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

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

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

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

Stand up lady! Stand up!

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

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

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

SHE CAN HEAR! OLI CAN HEAR!  To say that I was ecstatically, fantastically, wonderfully, overjoyed…would be an understatement. 

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

 

I know how to carry on.  I just can't seem to keep calm while doing so.

 

Don't Go Get Coffee When Your Child Is In Surgery

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

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

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

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

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

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

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

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

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

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

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

What?!

I was holding onto them both in the same hand!

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

I rushed the old lady at the information desk. 

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

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

Is She Afraid?

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

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

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

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

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

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

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

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

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

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

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

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

My old lady, Gertrude

Tomorrow Oli has surgery…again. Every time she has to go through this I think, “For sure this is the last time. Surely she won’t need anything else done.”  I think it Every. Single. Time. And then we have to do something else. Something comes up that only can be done under anesthesia. 

Tomorrow’s surgery is no big deal.  I know that it’s no big deal. They will not be cutting into her. Many, many people have gone through MUCH worse with their children. I know that too.  Oli will only be having an ABR (hearing screen) done and possibly tubes put back in her ears.

But…I am terrified.

 I have this wicked old lady, Gertrude that lives in my mind.  (Wait….stay with me here.) She likes to whisper nasty, horrifying things in my ear.  Remember worst-case-scenario-girl from previous blog posts?  The one who is sure the power will fail during Oli’s surgery and her arm will end up falling off?  Gertrude tells me these things. “Yoo-Hoo! Shaaannoooon! What if the anesthesiologist is a drug addict and gives her WAY too much medication and she never wakes up?” This is not all that far-fetched. When I had my tonsils out as a child my doctor was an addict and really did give me too much anti-nausea medication. Fortunately it was just that and not too much sedation. (A few years after my surgery he ended up giving a pregnant mommy too much sedation and sadly, she died.)  I just couldn’t control my tongue for hours after surgery. 

What?

Yes it was very, very bizarre. It would pull back towards my throat and then hang out like a dog.  On the drive home my mom kept saying “Shannon. Stop that! It’s not funny.” I told her I couldn’t help it. After I finally convinced her that I wasn’t doing it on purpose she got kind of freaked out. (Hello! Her child had lost all voluntary control of her tongue!) She called the hospital and after looking at my chart the nurse realized that during surgery, I had been given WAY too much medication.  The sticking out tongue thing eventually went away after a few hours.  Thank God!!  What if I had to live the rest of my life like that?  What if I still had no control of my tongue?  Has that ever happened before? I should Google ‘permanent loss of voluntary tongue control’.

Then I start thinking, what if that happens to Oli?

No. I probably shouldn’t Google it.  I don’t want to know.

I’m just nervous. Nervous, nervous, nervous. 

I’m scared because they will be putting her to sleep (obviously that alone provides a whole crap load of things for that old lady to work with), but I’m also scared of the hearing screen results.  What if it’s NOT just fluid in her ears? What if that doesn’t explain why her eardrum isn’t moving? What if it’s something congenital?  What if she’s NEVER been able to hear well out of that ear?  I’ve spent her whole life providing a lot of information auditorily. What if I’ve been doing it all wrong? It would definitely explain a lot if it turns out that she really isn’t hearing well.

No matter what, I have to try and ignore the millions of bad scenarios that are racing through my head. (Shut up Gertrude!)  I have to put aside my own fear and step up for Oli.  And I have to just keep moving forward whatever the results of that test show.

"Don't dwell on what went wrong. Instead, focus on what to do next.  Spend your energies on moving forward toward finding the answer."  -Denis Waitley