Archive | March, 2013

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

5 Mar

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.

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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!
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“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 or 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. 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.

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(I know how to carry on. I just do not know how to keep calm while doing it.)

Don’t Go And Get Coffee While Your Child Is In Surgery

5 Mar

If you can’t laugh at yourself, nothing else seems very funny. -me

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?

4 Mar

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.

Fine-Garbage, Happy-Lie Vomit

3 Mar

When I reread my old blog sometimes it strikes me as funny and sometimes it just strikes me as sad. I think I honestly believed all of the things I wrote back then. I believed that Oli was learning to walk and talk. I believed that it was still possible for her to just one day catch up to other children her age. Even though by the time she was 2 it was clear that she would not.

I was probably moving into denial at that point. I bounced around the first 3 stages of grief frequently in the beginning of Oli’s life. One moment I would be in denial and isolation and the next I would be angry. And then I would move into bargaining only to be swung back into denial. Most frequently I found myself in depression. Only recently have I moved on to acceptance and haven’t looked back since.

I didn’t know any of this then though. I didn’t consciously realize that I was grieving and nobody told me.

I thought maybe I just had bad coping skills (which I did) or that I was a bad person and a bad mother.

To combat my inner feelings of inadequacy, I told the world that everything was amazing. I tried to convince them that this was my lot in life and I whole heartily embraced it and was moving forward. I tried to convince you so maybe I would begin to convince myself. I thought that the more I tried to sell everyone on my fineness, the more fine I would eventually become.

It didn’t work out that way at all. The more I lied and faked happiness the more alone and miserable I became. By not letting anyone in, I isolated myself so deeply that I became entrenched in the quicksand of grief. Every move I made and word I spoke sucked me down and eventually had me suffocating on my own fine-garbage, happy-lie vomit.

As I move forward and continue my story I have to read the old blog to A.) remember what the hell happened 3 years ago because so much has happened since and B.) because it reminds me of that grieving process and I can clearly see it now in my writing. I can read a post from back then and see: lies, hope, sadness, fear, optimism, bargaining, pain, denial, anger, and a sense of being lost.

The one thing I don’t see in any of the old posts are real, genuine feelings. I see a bunch of words on a computer screen attempting to fool the world into believing that I was okay.

In the history of humanity, there was probably no bigger untruth.

I Choose To Call It “Helpfulness”

1 Mar

“No one is ever quite ready; everyone is always caught off guard. Parenthood chooses you. And you open your eyes, look at what you’ve got, say “Oh, my gosh,” and recognize that of all the balls there ever were, this is the one you should not drop. It’s not a question of choice.”

― Marisa de los Santos, Love Walked In

All I have to say today is: Good thing I started a blog when Oli was born and updated it a few times because I have forgotten half of the things that Oli did between the ages of 1 and 2. Stress induced amnesia? Sleep deprivation?

She started talking around the age of 2. She had about 15-20 words back then. She only said one word at a time except on one occasion where she used two. I guess this happened?.. because I blogged about it. True to my absent minded, fog clogged brain self I didn’t mention in the post what that two word sentence was. I have no idea now. That sucks…

She used to say the beginning or the end of a word. For milk she would say “ka” and later “ilk”. For drink she would say “dri”. She did say mamma all the time. It started as “ma-ma-ma” and later became “mom-mom”. Always strung together.

Maybe she got it from Kekoa? That boy never said my name just once and still doesn’t. It’s always “Mom. Mom. Mom. Mom. Mom.” It doesn’t matter if I answer right away or not. Of course I tell him he sounds like a broken record. Apparently I am no longer allowed to use this terminology with children, per the husband. He told me yesterday “People under the age of 25 have no idea what that even means. You can’t say record, tape, VHS…”

I can say it as long as I want. I can even yell it into a phone and then slam down the receiver!

When did I become old?

What was I talking about?….

Oh yeah, Oli. The main character in my story.

She also started learning to walk around this age. Not walk- walk, but Oli walk which started with me holding her up and moving her legs in a walking like motion.

So…basically it was just me, puppeteering her around the room.

I guess now that I think about it, it was ALL me.

I should describe this part instead of Oli learning to walk as Mommy forcing Oli to learn to walk. I was so impatient. Instead of waiting for the poor girl to do things at her own pace and in her own time I would impose my “helpfulness” on her.

I can only imagine what Oli is thinking when I set out to help her learn something new. Walking… talking… perhaps braille reading?

“Really mom? Why don’t you just go ahead and do that by yourself and come on back down to earth when you’re done. I’ll be here waiting in the land of reality when you get back.”

I chose to pretend that I helped her learn to walk.

Okay, really I didn’t. But I tried. I tried for almost 2 years. When Oli was ready to walk she did. When she was 3 and a half. Despite my deceptive attempts to tell people she was learning to when she was 20 months old. Who did I think I was fooling? If you came over to my house and saw me hunched over, carrying my 2yr old with just her feet dragging on the floor, would you have been convinced that she was walking?

“Look World! I am a genius! I give you—-Oli’s first steps! Just pretend you don’t see me here doing everything for her.”

I can’t help but laugh at my faked enthusiasm, my I-rock-at-this-parent-thing attitude and blatant foolery in my old blog posts.

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The Night Was My Enemy

1 Mar

“Sometimes the hardest part isn’t letting go but rather learning to start over.”

― Nicole Sobon, Program 13

I called Oli’s doctor and told her our decision to try Melatonin. She suggested that we start at 3mg and see if it helps. The first night I gave it to her I was so hopeful that she would begin a normal sleep pattern. I crushed up the pill and mixed it in some applesauce at bedtime. As Oli closed her eyes I whispered a little made up song in her ear.

“Sleep sweet Oli. Sleep tonight. Sleep sweet Oli until it’s light.”

It worked!! For the first time in months she slept through the night. I would like to credit my little song and the mystical powers of my voice, but there was a reason I was whispering it to her and not singing it.

Melatonin was now my best friend.

It was wonderful seeing what regular sleep did for her. She had more energy, ate better, and put on some weight. She finally weighed 20lbs at 20 months old.

It helped me tremendously too.

Before we tried Melatonin I would occasionally have anxiety attacks when darkness fell. I worried every night about how many hours of sleep I would get. Was I going to be able to function at work the next day? If I was staying at home the following day I worried that my temper would be short and that I would be too exhausted to do anything productive with the kids.

The night was my enemy. It held all of my fears, inadequacies, demons, unfulfilled dreams and unanswered questions. It made me feel weak and useless. I would hold my playful baby in my arms at 2am and silently cry so she couldn’t hear my anguish. I would turn my head so my tears wouldn’t fall on her face. And I would pray in the dark. I prayed and prayed for peace. I prayed for comfort and then I would wrap her up in her blanket and hold her tightly to my heart. Oli’s link to my heart and the complete love I felt for her was the only tether I had binding me to this life. This place and my role as a mother. I held onto her and gave this tiny person the power to hold me down and keep me from floating away.

Once she started sleeping it lifted some of those anxieties from my shoulders and allowed me to take a much needed deep breath. I actually took deep breath.

I hadn’t done that in a very long time.

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