Tag Archives: crazy

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.

images (17)

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!
images (16)

“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.

imagesCATLF7OC
(I know how to carry on. I just do not know how to keep calm while doing it.)

I Didn’t Sleep In 2008

26 Feb

Everyone should have kids. They are the greatest joy in the world. But they are also terrorists. You’ll realize this as soon as they are born and they start using sleep deprivation to break you.
-Ray Romano quotes

By the time my mom moved in with me in April of 2008 I think I had been slowly losing my mind.

True, it was partly because of my complete submersion into Oli-land and lack of full emotional participation in anything other than blind baby support. It was also due to a familiar term recognized world wide by new parents. And talked about, dreaded, cursed, and feared by the blind community.

Sleep deprivation.

When my girl was 6 months old she just simply stopped sleeping.

She was on her own little planet where there was no 24 hour day. Sometimes her day was 20 hours, sometimes it was 27 hours. There was absolutely no sleep schedule. She would go to bed at 7pm get up at 1am, be up until 9am, go back to sleep until 2pm, get up and stay up until 12am, sleep until 4am. . .every single day was different.

When I went to work with bags under my eyes, mismatched socks, and had forgotten to run a brush through my hair, the new moms in the unit would spot me across the room like a bug drawn to a light. They knew what I was suffering from and they were always ready to inundate me with solutions to Oli’s sleep problem.

“Put her to bed at the same time every night. Make sure she’s had enough to eat. Bath her with this soap and then apply this lotion. Play this song before bedtime…” The list goes on and on.

I listened and I tried anything anyone ever suggested to me. Nothing worked. The only thing I refused to try was putting a dab of alcohol in her bottle at night. But that may have simply been because I didn’t want to share and needed every last drop.

I read books on sleep, googled sleep solutions for blind babies, talked with other parents of blind children, asked her pediatrician, doctors who worked in my unit, and random strangers at the grocery store who looked just like me. A soundly sleeping infant in a car seat and a mother looking like she had just returned from war, hadn’t eaten in a week, showered in 2, or slept for 3. We would bond in the frozen foods section describing last nights battle in which our child always defeated us. Granted, their baby was only a month old and mine was turning one year.

Eventually by the time my mom arrived I had just given up.

I was totally convinced that Oli was never going to sleep again.

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