Tuesday, July 29, 2008

Heartbreak - a little at a time

(first week home - 5 lbs)

I’ve come to realize that motherhood means just a bit of heartbreak on a far too often basis.

My first experience was when they took Itty Bit to the Neonatal Intensive Care Unit for his first night. He hadn’t eaten and they wanted to monitor him. I was still running on adrenaline and felt rather invincible.
Sleep? Who needs sleep? Apparently NICU nurses are firm believers that new mothers do.

I was rather ceremoniously ushered out of the NICU (read: pushed out by a friend who happened to be the head nurse) and back to my room. My quiet and empty room where I cried instead of slept. I wanted desperately to hold my little golden boy. My heart broke with missing him.

(by the way, that little NICU visit lasted all of 90 minutes… I was back in there claiming that I had napped and was refreshed.)

The next day, I encountered a terrified-looking phlebotomist who had trouble meeting my eyes. Daddy explained that he’d warned the young man that if the baby cried, his Momma Bear (deaf or not) would come charging ready for action. The poor kid was petrified. He stammered, “I don’t like to make babies cry”.

I felt for him, but it took all I had to keep from tearing his arms off as he pierced my son’s foot and squeezed the heck out of it while Itty Bit screamed. More than a little heartbreak…


My worst moment in the hospital was getting the final diagnosis of Itty Bit’s kidneys. A kind doctor came into the ultrasound room where my tiny premature son laid shivering with limbs failing as they checked his kidneys.

I was desperate to know what his trained eyes recognized. He nodded to himself and spoke quietly to the radiologist. He turned to us and said “the images confirm that your son has polycystic displastic kidney disease.” He quickly followed with, “his right kidney should grow larger to do the work for both; he may be fine but needs to be monitored.”

I didn’t say a word. I couldn’t.

I could feel the hot tears on my face, but had no words for this man. After months of not knowing, our son’s struggle was in black and white on the screen.

The nurse patted my shoulder and said “all new moms feel emotional like this, it’s the hormones”.

The “you don’t even know me, you don’t know what this is like” feeling brought anger. I wanted her to stop smiling patronizingly at me.

Then they placed him back into my arms and I had to hold onto the possibility that he *could* be alright - and he was alive and kicking at this moment. Still, my heart hurt with the news.


Fast forward to the first few weeks at home. Itty Bit was on a “glow machine” (the official medical term for the large machine velcroed around his tummy to treat jaundice - like in the picture with Papa above) and we were literally anchored by the heavy thing. I slept on the floor with the glowbug in my arms.

Daddy asserted that the child did not need to be held every moment and needed to learn to fall asleep on his own.

I was mortified. This tiny little baby? He just got used to being outside of me and the lack of contact would surely make him feel unloved.

I gave it a shot.
And my heart ached when he began to cry.
Tiny little pitiful wails with itty bitty fists shaking in the air.

I started to cry. Harder than him. And I refused to be comforted. It was probably the first real time I had snapped at my poor husband.

I gave it several minutes before my emotions completely crumbled and I reached for him. His diaper was wet (yes, in the full 10 minutes since I’d changed him last) and I felt impossibly guilty. Guilty for not answering my son's cries.

On to his first words, first steps, first birthday, and that constant feeling that I can’t keep up. That I am missing things that can never be recaptured.

I’m there, I’m in the scenes.

But somehow I feel like two years went flying by without me absorbing enough. Though I get the feeling that there’s really no such thing as “enough”.



My latest… the little guy woke up from his afternoon nap thoroughly terrified. He was sobbing hysterically by the time I ran to the room. He refused to be comforted or to tell me what was the matter. Just ragged gasps of breath between awful huge sobs. He is not one to normally cry tears, but they squeezed from his eyes as he refused to be consoled.

I held him tightly.
Mommy’s here
Mommy got you
Mommy hold you
Jesus bring him peace
Jesus make him all better


He slowly quieted and his face relaxed.
I have no idea what brought on his terror. And as I held him against my chest, I could smell his sweat-drenched golden hair and feel his even breath. I saw his still-wet eyelashes and I wondered at what could have brought him to a place of such fear that even his mommy couldn’t reach him?

I spent those hard moments acknowledging that there WILL be things I cannot rescue him from. And I slowly came to the realization that if I ask God to make my boy strong, that these bits of heartbreak are part of it. For both of us.

I was brought to that place once again.
Abraham and Isaac.
Do I really trust God?
Do I really mean it?

Help me to. Please help me to.

Monday, July 28, 2008

And the winner is...

GASP!

It really and truly is me!

I've been a longtime fan of Stacy's photography on her blog "The Land of K.A." and she recently offered a giveaway in celebration of post #1000! Lucky me, it is a skincare set that I am excited to try.

So head on over... check out Stacy's cute kids and gorgeous photography. She offers a great mix of entertaining updates, parenting advice, recipes, creative sewing projects, and a great sense of spunk.

Thank you Stacy!

Slow Recovery

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Not sure if I've said it before? But I love this kiddo.

He's still not feeling 100%, but we tried to squeeze in something fun in the middle of everyone being so low on energy. As you can see, he kinda perked up enough to rock for a bit on the little ducky.

He refused to nap, then fell asleep on daddy's lap at 5:30... just in time to wake up at bedtime, right?

He's been overly generous. Both of us have now caught his stomach bug. I spent a decent part of last night getting reacquainted with lunch in the sink over and over again...

The silver lining is that we all got some much-needed down time with eachother today. And yeah... I got to mess around with the blog template a bit! :)


Saturday, July 26, 2008

Work It

This girl knows how to use every bit of her charm.

She's a sweet and affectionate little bug, but is also scary smart.

She can be bashful, but us privileged few get to see her ham it up every once in awhile.

First check out her older sister's Elvis impersonation


And now tell me the humor isn't in the genes :)

Parade

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He had just heard mommy say, "Look Tris, there's a motorcycle!"

Wednesday, July 23, 2008

What Memories Are Made Of

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We have days of sunshine here in Washington.

We really do.

Days that make you forget about the 9 full months of uninterrupted rain.

Days that call you to come outside and see the blessing of the rain - in a million colors.

And smell it - in a million flowers.

We have roses going nuts and spilling toward the ground with their weight, fat sugar peas waiting to be tasted, explosions of dahlias showing off insanely vivid colors, sweet strawberries wandering over the walkway, and one incredible honeysuckle that stretches several feet above me and makes the driveway smell glorious.

My husband and son are off being little boys on the "aktor" and I find myself immersed in the details. We all lie on the grass and it is easy to feel small. The sky is brighter and wider and bluer than my camera can capture. The big oak tree gives beautiful filtered light and greets the passing clouds.

"We do not remember days, we remember moments."

How true that quote is!

This will be one of those memories of "remember those days?" I'm thankful that God prompted me to notice and credit Him with the amazing show.
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Thursday, July 17, 2008

The Things We Do


So I got to thinking…

About the things we do for our kids.
Things that would have seemed silly to us pre-parenthood, but now only seem odd to our single friends.

What prompted this inner conversation? The fact that two mornings in a row, I’ve bundled up my sleepy boy into the car and driven off into the sunrise.

Literally.

The first time I realized the sunshine was right in the kiddo’s face and prompting his eyes-squeezed-shut-I-don’t-wanna-wake-up-yet look, I started waving my arms trying to figure out where to block it.

Yup… other drivers on the highway had to be wondering what the crazed girl in the eastbound lane was waving frantically at.

I found it.


And the only way I could keep the slumbering babe’s face in the shade was to hold my right arm straight out at shoulder height. Which, post accident-that-totaled-two-vehicles… just isn’t very comfortable for me anymore.

By then, the other drivers I’m sure were wondering what the crazed girl in the eastbound lane was doing with her arm stuck straight out like that.

But it gave the kiddo a few more minutes of sleep – and admit it; you know as well as I do that those last few minutes are the best, just the best.

This goes right along with the foreign language that seems universal to new parents. The “ooh, boogy boogy boo, mmm mwah!” standards. My grandmother is the queen of this endearing trait. No one’s name is safe… I loved hearing the answering machine message from her: “Paula-wallaAA-bipooOOoo. Are you there? Paula-wOOOalla-bip-beeEE. Walla-walla-woo-hoOOO!”

And the careful rituals honed by many a sleep-deprived mommy.
Perfect lighting (bathroom nightlight with the door slightly cracked)
Perfect white noise (only the fan on the lowest setting, exactly 5 feet from the crib)
Perfect bottle (whole milk heated for 26 seconds with 2 drops of real vanilla)
Perfect blanket (blue and white plush “Bluey”)
Perfect bounce (side step, bounce bounce, side step, bounce, bounce)
Perfect escape maneuver (slide shoe onto baby’s back in place of your hand)


Anyone remember those days?

Monday, July 14, 2008

Another Charming Moment



See, I thought it was cute that he was sticking his fingers in his ears and grinning at me...


Until I figured out just why he was sticking those fingers in those ears...

It apparently had been far too long since we were given a demonstration of "happy screaming".

If you aren't a parent yet, trust me... this is one of those perks that they don't warn you about. My darling nieces are (deafening) proof that this isn't gender-specific. Just kid-specific!

Sunday, July 13, 2008

Childhood Revisted (2)



I had one of those moments tonight.


Trying to coax Itty Bit into singing "Twinkle, Twinkle Little Star

(his version is something like:

"Twinkle Twinkle Little Star
grandma Tristan mama are
uppa uppa McQueen Mater high
Like a diamond in the sky
Twinkle Twinkle Little Star
grandma Tristan mama are")




Daddy started in with

"I love you
A bushel and a peck

A bushel and a peck
and a hug around the neck
A hug around the neck
and a barrel and a heap
A barrel and a heap
and I'm talkin' in my sleep
about you"


 
I grinned and told my mom that it was on Itty Bit's Veggie Tales cd.

She said, "Oh no honey, that song isn't a Veggie Tales song, it's a really old one. Your great-grandma Don used to sing it to you. You were two years old and she'd say 'I love you a bushel and a peck' - you'd run and grab her around the neck and say 'an-a-hug-arounna-neck'"


I just looked at her in amazement.


I don't remember it. And I feel slightly cheated. It was back when I could hear, and my great-grandmother - who could be a hard and distant woman - sang this sweet tune to me.


I felt loved. From three generations ago. It is hard to explain.

I've always had a special bond with my great-grandmother (whose name is not Don, but she was dubbed that by a grandchild 50+ years ago and it stuck).

For some unknown reason, she chose to dote on me and treat me more kindly than others. She had quality time to give, and lots of it. I learned Rummy and Scrabble under her tutelage, and that 14 cups of lemon tea help you stay awake till the Big Apple drops, but you aren't going to feel well by then.


She fought cancer for most of her adult life and stubbornly came out on top. I lost her a few years ago and still felt amazingly privileged that I was 26 years old with 5 generations of my family living.
She showed me that life is all about change. Even at the very end of a long life, you can choose to change and you can choose something better.

There was something God-sent about that song tonight. It felt much like a hug around the neck...

Friday, July 11, 2008

Recovering Grump

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(I think we'll forego Christmas presents this year and just take him to a construction site).

It's been a bumpy week.


Tris has a stubborn cough that leaves him gasping at times. But at least the fever has not returned, and he has more energy. Oh wait, is that a good thing???


Took him to the park today and he ran.

And ran.

And ran some more.


We don't need fancy playgrounds, just a big huge place to run.



Was I ever like that? Not needing to be entertained, but simply caught up in the simple things I could do? Like stand on my own, put one foot in front of the other, arms pumping madly between alternate giggles and breaths of fresh grass?




I recently read another post from a blog that inspires me daily
(The Best Days of My Life)
- about the difference between boys and girls.


Well, if she's missing some BOY time, she can get a taste of it right here:



Boy: A noise with dirt on it...

This video just cracks me up. Sorry if it's inordinately funny only to me, but the kiddo just went nuts in the patch of dirt. And that's the SHORT version!



Wednesday, July 09, 2008

my ankles are cold


I know I shouldn't complain...


There are plenty of other places to live that are currently experiencing a heat wave or storms or or some kind of weather calamity.


But I know I looked absolutely ridiculous when I arrived at the office this morning.


I'll spare you a picture, but I'm sure your imagination could fill you in...


I'm sick of being cold in the mornings and too warm in the afternoons. So I had enough foresight to layer up this morning. Would you believe it was shiveringly FOGGY whenI left, yet HEAT WAVE warm 5 hours later?


Well, my layered ensemble consisted of capri pants and a t-shirt. I opted for my favorite brown tennies without socks. My much-loved brown shirt finally ripped so my only other kinda coordinating warmer layer available was my Christmas parka vest from my dear better half.


Getting the picture yet?


My ankles froze all the way to work, and then it was still too cold. So I was forced to display my incredible trend-setting outfit to my smirking coworkers all morning long.


By the time I was headed home, parka was off, A/C was on, windows were down, hair was up, and I was wondering why on earth I hadn't worn a tank top...


But I'm still not moving to Arizona!


Monday, July 07, 2008

An Educational Hijack *Part 2*

continued from Part 1 (here)


I realized just how much some people assumed they knew about "deaf" people one shocking day in college.
A professor pulled me aside and told my interpreter to tell me that if I needed assistance in the form of answers on exams, that he was willing to "accommodate" my d
isability in that fashion.
I felt the heat rise to my cheeks as I quickly stammered out a reply that I would do just fine taking the exams without his "help". I was mortified to think that my college degree could be cheapened so easily. Not every deaf person needs a handout.


 
Some might assume that I'd be an unknowingly negligent mother. Someone who smiles in oblivion as her children are crying/choking/breaking things - all sounds that don't penetrate her personal silence. Instead I am often lovingly scolded by my husband for being overly protective because my son is rarely out of my sight. Not every deaf person is automatically excluded from good parenting.You might also assume that I don't have any use for music. You'd be wrong.
Our home is often filled with the sounds of silly songs, Christian tunes, and Toby Keith.
We dance and clap along, the speakers barely louder than our laughter at Itty Bit's newest moves.


I danced for years with a local classical ballet company. I learned an important lesson... not everyone is born with rhythm. And as odd as it must have been, I was placed in lead positions with partners and worked my way up to demi-soloist. Not every deaf girl has to give up her childhood ballerina dreams.



In my college years, the state vocational department told me that I would receive no services because I was fully qualified to work in a position such as at a fast food restaurant. I had graduated with high honors in a large senior class - all while taking college level courses. I was stunned to realize that this was all that was expected of me to be considered "successful".

So I made my own way. Applying for a position in a state law enforcement agency and working my way up to a much-loved job that handles many millions in public dollars. Not every deaf person lacks ambition.


 
You might assume that I don't care to answer personal questions about my hearing loss. You'd be mistaken. I'd rather you know, so you and I can easily communicate. I'd like to know what your handicaps are. The things that make you feel less than or unable to accomplish big things. We all have them. And like bad dreams, they lose their potency when the lights come on and we talk about them.

All this to say - I'm still RACHEL. I love my family, horseback riding, cooking shows, and embarrassing my mother with my burping skills.
Each person you meet will be different. Some deaf people don't speak, don't write blogs, don't dance, don't work in finance. Most of those "don'ts" also apply to the majority of the hearing people I know.

Instead, the most common denominator of most deaf people I've found, is an inherent desire to communicate, to be understood, and to be appreciated for who they are. Doesn't that sound incredibly "normal"?


 
So next time you see someone, take a chance. Don't shy away. Your attempts to communicate could be rewarded with a lasting friendship, a new experience, and a shared understanding of someone different than yourself.

Thursday, July 03, 2008

Spoken too soon


After Children's pronounced Itty Bit such a healthy little guy last week, I kinda assumed we were on the usual track of blowing raspberries at most of the bugs that go around.

I was so wrong.

Our kiddo has had a runny nose for a couple days and hasn't been keen on eating or drinking. Poor guy woke up from an afternoon nap yesterday with a hoarse throat and croupy cough. Not good, I thought.

Then within an hour he was burning up and had a temp of 103.5. Even worse.

The final straw came when he stood up and projectile vomited across the entire distance of our coffee table. That's it.

We got the specialist on the phone and were instructed to haul him into Urgent Care (by then it was after 9pm). The specialist had called ahead and ordered a urine sample to rule out infection. Grandma met us there and Itty Bit refused to let go of her.
We had decided beforehand on a united front of "no catheters".
**********
(Based on a previous experience where the same medical facility told me he needed to be catheterized. I refused the repeated attempts to convince me that it was best for him to the point of even having to turn away the nurse who came in with the catheter kit. She sighed in relief and said "oh thank goodness, I've never had to do one on a baby before"!!!! A little patience and they had their urine sample and we escaped without the risk of hurting him or introducing bacteria into his body.)
**********

We told the medical staff upfront - "no catheters".
"Okay, we'll see if we can get him to give us a sample".
The kiddo hadn't been drinking well for the last 24 hours - his fever was burning all his fluids. He honestly tried, but had nothing. He tolerated the Pedialyte popsicles pretty well and took sips of juice. But by midnight, you could tell the docs were running out of patience.


*
They came in and said it was not cost effective to have 6 people waiting around for a little boy to pee. They said we could either catheterize or go to the hospital.
*
So... off we went to the hospital. With the goofy specimen bag still attached to him. The kiddo wanted to fall asleep and was super clingy. We got to the hospital and I was relieved to see a former classmate was on duty.
*
We sat down to wait and I-kid-you-not. Within 5 minutes of our arrival, the kid peed. After 2 hours of waiting... of course the bag was all folded up so the pee went everywhere (mostly on me).
*
In the meantime, I get the bag off him, change his pants, throw a clean diaper on him and ask Daddy to take the bag to the front desk and ask for another one. Right then a bloody emergency walks in so we get bumped. Within a few minutes, I realize that Itty Bit has a wet diaper. Dang it... I can picture another 3 hour wait.
*
My former classmate looks skeptically at the amount left in the first bag but sends it to the lab anyway. A sweetheart of a nurse comes in and puts another bag on him and we are left to wait again. Finally, around 2:30am, we are told that the original sample was enough and there are no signs of infection. YAHOO!
*
Kiddo was still feverish and had finally fallen asleep. Strapped him in and went home to crash at 3am.
*
It's been a heck of an adventure the last 24 hours. I know we got off easy - he's 2 years old and this is the first time he's puked or had a fever.
*
In spite of being frustrated and exhausted last night, I am still grateful for the good results. Still grateful that we have the ability to find medical care this close to home. And grateful for small miracles like Super Classmate on duty. Grateful yet that he is feeling better enough to say "help Daddy" and out outside to push dirt back into the fence holes that Daddy has just dug.
*********
What do you have to be grateful for today?

Wednesday, July 02, 2008

An Educational Hijack *Part 1*

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(me at age 4... waiting for surgery)


Technically this is supposed to be a space where our family and friends can catch up on the latest Itty Bit adventures at their leisure.

So... I'm hijacking it.

I'm mommy. It's one of my superpowers.


Since I recently posted a couple of personal - as in "deaf" personal - entries, the surprising amount of support and empathy from you blogreaders got me thinking (thanks, by the way).


This one's kinda selfish. Because I hope you remember a couple lines next time you encounter someone with a disability.



The first and foremost way I define myself is "Rachel".

Running into high school classmates often results in an awkward exchange:

Me: Hi - did you go to Anytown High School?
Them: Uh yeah, did you? (obvious consternation as they try to place my "accent")
Me: Yeah, I think we had biology together?
Them: Ummm
Me: I was kinda quiet.
Them: Ummm, I'm really bad with names.
Me: I'm Rachel, I used to have a sign language interpreter in class?
Them: Oh yeah, you're the deaf girl.


I realize that it is easier for people to recollect something that is different about me.

But in the often-lonely school years, I felt like most classmates grouped me with the rest of the "special ed" kids. The little yellow school bus group.

The "deaf" label seemed the only thing they associated me with.


I realize that as social as high school can be, there are an awful lot of lonely kids out there, too. And I sure could have gotten up off my butt and tried to give classmates a better glimpse of what was "normal" about me.

Here's what I hope you most take away from this: everyone is different. I'm not the same as the next deaf person you'll meet. You're not the same as the next "normal" person I'll meet (though some more than others! *grin*)


I wasn't born this way.


My hearing loss is a result of damage caused by repeated chicken pox bouts.

My baby sister was two weeks old. It was my 4th birthday when I lost the rest of my dwindling hearing.

And because my parents are who they are (in a good way) - it was a tumultuous time for our family. It would have been far easier for them to ship me off to an institute and focus on the brand new baby. Refusal to take the easy out cemented their hero status.

My sister's childhood was filled with tagging along as my mother took me to appointment after appointment:


doctors

specialists

speech therapists

audiologists

surgeons

special education teachers

school administrators

interpreters

faith healers

I was placed in a special preschool program for hearing impaired kids. It was an early lesson in segregation. We had our own small classroom, bathroom, and small playground fenced off from the rest of the school. On the other side of the chainlink barrier was a noisy world full of clamor and fun.

It was an eye-opener to suddenly feel different.

Before, I'd felt special. One of the oldest in a large gang of hard-playing cousins, I was known for being the exceptionally girly and bossy one. Bedecked in dresses and braids, I never backed down from a fight.

I was an early talker and had already learned to read. I felt smart and pretty and in charge of my little world. All that self-confidence and puffed-up 4-year old pride dissapated with my hearing.



It left me a bit of an oddity. Someone who was still considered bright by scholastic standards, but who was clueless while the rest of her classmates followed the instructions given over the school loudspeakers.

Someone who couldn't hear, yet could lipread and speak.

A stubbornly unrealistic girl who used to sing on key and still loved music and wanted to be a ballerina.

Someone who just simply wasn't cool to hang out with unless you wanted the "retard" guilt by association label.


What a profound lesson in how feeling "different" can impact a person's ultimate potential. How many times have I unknowingly made someone else feel excluded? Or in my shyness neglected to reach out to someone who obviously could have used a friend?

More personal lessons in Part 2 (here)