almost thisclose to selling my kidney…

…because you know I totally could. I mean I have proof that they are efficiently amazing!

In all seriousness, I’m just a little stressed.

Someone from the CBS Evening News and the New York Times called me today when I should have been napping before work for what ended up being a 35 minute long question and answer session about the economy, health care, bailed out banks passing out bonuses like Halloween candy, the President, Congress, Sarah Palin, the Tea Party Movement, unemployment. The results of my opinion and hundreds of other American people I was told will be on this Thursday’s CBS Evening News and in the New York Times, and no, I am not paid to share that with y’all. But if you really care to know what I’m thinking, well, tune in.

I should have tried to fall asleep but instead I tossed and turned fitfully. Perhaps it was because my next door neighbor’s kids were running amuck in the backyard screaming at the top of their lungs chasing their howling beagle. Or maybe I couldn’t doze off because my sinuses were packed with snot making it impossible to breathe and sleep at the same time unless I got liquored up on Nyquil. But I can’t down Nyquil shots 4 or 5 hours before I head into work. So maybe I was amped up on Sudafed instead. Economy, politics, unemployment, noisy neighbors, snot-packed sinuses, sudafed high…whatever the reason, I didn’t get a nap before work like I should have. I’ve worked a 7 PM to 7 AM shift before without any sleep. With a little diet coke, I could definitely do it again. So I got up and got myself ready for work and just as I finished packing my lunch for the night the phone rang…and I was canceled due to low census…again. My NICU isn’t the only one. Talking to NICU nurses all over, I hear their censuses have dropped off a lot lately too.

Why?

Well, I could discuss all the factors over the last few decades that have created this clusterfuck that is the state of our economy and how it affects birthrates, or I could discuss politics, or the craptastic state of healthcare run by pencil neck insurance geeks but I have bigger worries…like whether or not our banker, who was bailed out by the feds before Obama, will accept a pretty smile from me for a few months…probably not. Then it is safe to assume other bill collectors won’t be dazzled by my naturally perfect smile either.

I do have a kidney. A pretty amazing kidney.

I could also go out and nag all the women of child-bearing age (except my daughters) to fornicate, get knocked up and make bad choices so I can take care of their babies. It’s what I do. I’m good at it. I have the experience and training.  Don’t judge me too harshly, please. I have 4 kids to feed, a college tuition to pay, a bailed out bank-owned mortgage to pay. I’m just a little stressed.

Perhaps tomorrow will be better. I know that is so Scarlett O’Hara of me to say that but I am scheduled to work tomorrow night. Perhaps 8 out of 16 scheduled nurses will not be canceled and I will get to work tomorrow night. I think I will do a Nyquil shot to clear out the sinuses and dream about working tomorrow night. Don’t worry, my kidneys can take that shot of Nyquil just fine.

overheard under the Big Top #205

Abby- Mom, is it okay if I take the car and hang out with my friends and then spend the night over at Danielle’s house?

Mom- Well…

Holly- You know the car can’t stay out all night.

Zoë- That’s right, the car can’t stay out past 11 on a weekend

Abby- Lindsay Lohan has a curfew, really?

Mom- Yes, she does. Your sisters are right. The car can not spend the night at Danielle’s house.

I swear the greatest parenting decision I ever made was when I declared that the car has a curfew. Of course older siblings backing me up helps…it helps a lot.

this weekend- date night with the boys, next weekend- bonfire at the Big Top

Bill proposed a date night and he didn’t have to ask me twice. He promised me some casual dining at a hole in the wall Mexican restaurant in Livermore with amazing margaritas and a meet-up with members of his biker social media group.

Yeah, me with a bunch a motorcycle enthusiasts because I am all about motorcycles.

Nevertheless, he didn’t have to ask me twice to get a little glammed up and go out with him. I take my date nights any way they come.

But like many Friday nights, all of our girls had plans which I have to say is just selfish. Who said young adults and teenagers can have social lives, jobs and baby-sitting gigs…on a Friday night? It’s just plain selfish.

Still Bill was not about to give up on a date night. How about a date night with your TWO favorite boys?

Now how could any girl turn down an offer like that. Me with my boys…and the bikers…and margaritas. But especially me with my boys.

The salsa was really hot according to Daniel. Perhaps it is too spicy, I countered. No, it was too hot he maintained as he took another shovelful with his chip. I suggested that if it’s too hot then perhaps he should skip the salsa. Apparently it wasn’t too hot after all as he scooped up most of it for himself. The salsa was good…and spicy. The margaritas were as good as Bill promised and the seafood cerviche that I had was great.

Bill’s friends enjoyed amazing Daniel with table games…

…when he wasn’t amusing himself with his own games. How in the world did I ever survive dining with children before the Nintendo DS? I have no clue.

I discovered that biker social media group meet-ups are no different than blogger meet-ups. There’s lots of great conversations and laughter shared face to face with people that you have known really well for quite sometime…online. They are a pretty great group of people to break bread with and share margaritas with.

Especially Connie. Connie does not ride a Harley. I know this because when she met me, she asked that I take everything of my darling husband’s that has “Harley Davidson” on it and burn it.

“Everything?“, I ask.

“Everything!“

I don’t believe that Connie realizes what she has given me permission to do with her direction. But Bill does. Without hesitating, he looked me in the eye and said, “No!”

So next weekend there is going to be a big ol’ bonfire at the Big Top. Who wants to bring the marshmallows?

Kidding, honey! I’m just kidding.

my body is a machine…

…and my kidneys are finely tuned precision instruments.

I discovered that fact after an extensive abdominal ultrasound study.

The family goal the last couple weeks it seems was to max out the family deductible on our health insurance plan. It was close but it looks like we have accomplished that.

Score!

Now we can really get sick!

In all seriousness, the last two weeks were  jam-packed with doctor appointments. Time for annual physicals (some procrastinated), a couple ophthalmologist visits with a referral, a new referral to the dermatologist and a you-can’t-put-this-off-any-longer mammogram.  But because that wouldn’t be enough to meet the deductible, I stepped up with severe, right lower quadrant abdominal pain that lasted for several days.The kind of pain where you find me hunched over like an old lady cuddled up with a heating pad eating naprosyn like they are smarties candies.

Everyone knew what it was…

appendicitis?

constipation?

IBS?

food poisoning?

diverticulitis?

ovulation?

tubal pregnancy?…not bloody likely!

ovarian cysts?

hernia?

kidney stones?

and the list goes on and on my friend!

I tried not to Google my symptoms. I also rationalized for most of the day or so...just like a mom. In all seriousness, when I began to think this might be something to worry about, I also knew the very next day was my annual lady bits exam. With all the poking and prodding that entails, I was certain there would be further investigation and resolution.

There wasn’t. But I got my blood drawn. I got poked and prodded a little bit more than usual while I was asked to rate my pain…let’s just say it f—ing hurts even more when you do that. I got to share in great detail the quality of my bowel movements. I got warm jelly smeared all over my belly and I got really intimate with an ultrasound transducer. I didn’t get wined and dined for that but at least the lights were turned down low.

…and all I have to show for it is a whole lot of nothing. Well, not really nothing. There just was no conclusive reason for the lower right quadrant severe pain and just as randomly as it began, it is now gone. But it is not all for naught.  I do have very efficient kidneys that work in perfect synchronicity and I have the ultrasound picture to prove it.

Oh, and we met the family deductible for the year.

his not lovely bones

Here is Daniel with a picture of his bones. Don’t you dare call them cute or beautiful. They are tough boy bones. That is all.

Now why is my son holding an x-ray of his left hand and wrist? Did he fall from the monkey bars at school? Or perhaps he got a little too aggressive with his Tae Kwon Do punches. No worries. No bumps, no bruises, no sprains and no broken bones. He just had a referral from his pediatrician for a little extra lab work and an x-ray of his left wrist to determine his bone age. After an all around normal annual checkup, Dr. B. revisited the fact that Daniel is remarkably small for his age…

off the charts small for his age…

waa-aay off the charts small for his age.

:::sigh:::

Here we go again.

Our conversation continues as I remind her that of course he is small for his age. He was born 16 weeks too soon. He weighed only 1lb6oz at birth. He was a classic BPD-er or ex preemie with chronic lung disease. He was tube fed for four years of his life living with severe reflux disease. He never caught up in growth during the most critical “catch up” phase between the ages of two and four. His biological parents were both, well, they both were not as tall as me and I am not that tall. Okay, I’m 5′7½”…I’m tall but not that tall, really. Odds are my boy is not going to tower over me and I am okay with that. All the anecdotal tales offered of preemies you know who are now 6′9″ tall really mean nothing to me. Whatever height Daniel finally reaches is okay with me because obviously that is the height that the good Lord intended him to be.

Still Dr. B. is concerned. She is aware that Daniel was followed by endocrinology for over three years before she took over as his primary pediatrician. His growth hormone levels were on the low side of normal and there was much debate and discussion over whether or not he would benefit from daily injections of  human growth hormone well into puberty. There was also a lot of blood drawn during those three years. Daniel’s blood. As if my little man was tortured enough in his young life. Finally I grew tired of long, long drives over to Packard Children’s, the anxiety of weighing and measuring and plotting my son’s miniscule growth and the blood draws every three months. I hated the drawing of his blood. His veins were scarred and twisted and tortuous like a heroin addict and it always proved to be a sweaty, teary, exhausting endeavor to draw a couple teaspoons worth of his blood. Finally I confronted the endocrinology team with the ultimatum of either we start the HGH therapy or we agree that he won’t benefit from it and move on. Let him be the size he is meant to be. So then Daniel was released from their services. One less specialist we had to see then.

He has grown a lot since then. A lot. But he remains head and shoulders below his peers at 3′7″ and Dr. B. is curious. Perhaps there is something going on. Perhaps endocrinology shouldn’t have been so conservative. Perhaps there still is a crack in the window for some catch up growth. So she orders some blood work…YEAH!…and a bone age study, an x-ray of his left wrist.

The results?

Hormone levels are on the low end of normal range just like they were over 5 years ago. And his bones? How old are his bones? Well, he doesn’t have the bones of an 8 year old boy. No, his bones are younger.

But they remain tough boy bones.

The plan?

Well, Dr. B. and we will have to talk that over. We shall see.

In the meantime Daniel has this awesome picture of his tough bones.

How lucky can one boy get?

start here

Another competition dance season is about to commence and Jodie is more than ready. I wonder if I will ever not get tired of being amazed at what this little girl of mine can do with a pair of tap shoes and that strong body of hers. Well should I grow weary of her mad tapping skills she has decided to take her dancing up a notch or two as she is now learning and perfecting her skills in jazz, ballet and lyrical. She has even proven a couple of times already this year that she can hold her own in a hip-hop dance. She has come a very long way from when she first started back when she was 8 years old. She has some very big goals she intends to achieve in her future and in order to do so she has determined that she needs to be much more than an extraordinary tap dancer. Given what she can do I imagine that she will have no problem reaching that high bar she has set out for herself.

Right now it seems that little Hazel is setting out to follow in her auntie’s foot steps. I’m not surprised. The girl has loved to dance since she could make her own body move with purpose.Why not after all. There is music everywhere she goes and when she hears the music the baby girl has to just move. So it seemed only natural that she would start out in a Mommy and Me Creative Movement class where her auntie takes dance. She loves it. Will she continue to follow in her Auntie Jodie’s tap shoes? Only time will tell. But she has the shoes and that is a good place to start.

planting parental pride

I love, love, love watching the Biggest Loser! I just can’t get enough of Bob and Jillian and the drama of the contestants’ personal transformation both inside and out. Last week one contestant’s revelation struck home with me. Sam, from Rohnert Park, shared the joy he felt after a telephone conversation he had with his father where his father told him how proud he was of him. What parent wouldn’t be proud of their child, no matter the age, when they are doing something that is good for them? But Sam tearfully shared that this was the first time in his 24 year life where his father actually uttered those words.

Can you imagine waiting that long to hear that from your parent?

I can.

I can’t explain in a brief way why but although I was the ultimate over-achiever as a child and worked even harder to be a good girl, my parents never said out loud to me that they were proud of me. I knew after I moved out and headed my own way to California that they were, indeed, very proud of me. Apparently they told my siblings that all the time. But they never told me. Then one day, thirteen years ago, fifteen years after I moved away from home, I heard it. Mommy~Dearest came to town to admire her 6th grandbaby, my #4 child. It was a big deal because it was the first time she got herself on a plane and traveled across the country to visit after the birth of one of my children. She came with the idea that she was going to help. Mom actually came for a nice little vacation with the hopes of resting, relaxing and being shown a good time. It’s a good thing that this was my 4th baby because by then I was pretty good at juggling.

My family and I showed Mommy~Dearest a good time, taking her to favorite places in the Bay Area and entertaining her with her delightful grand daughters. Of course they were delightful! They were my girls! I trained them well. I also brought my mom to my workplace. It was a quiet Sunday evening in pre-HIPAA days when I took mom on a private tour of the NICU where I worked. I introduced her to the charge nurse, the on-duty neonatologist and nurse practitioner. I showed her some of the state of the art equipment that I worked with while caring for my patients. Mom was amazed. She had my younger brother 6 weeks early back in the day when it was a miracle for even a 34 weeker to survive so it was amazing for her to see how different life in the NICU was. Looking at a baby born 10 weeks earlier than that took her breath away.

“You can take care of babies that small?”, she squeaked.

“Yes, yes we can, Mom. All the time.”

Mom stared at the tiny little one pound baby nested in the isolette for a very long time before she looked up at me with tears in her eyes and said out loud to me for the very first time, “I am so proud of you!”

Honestly, I didn’t know what to say. Finally I stammered a very weak thank you. Oh, and I started to cry a little too. I can’t begin to express how much that meant to me. Deep in my heart, then and now, I know that I am the person my mom and dad can be proud of in every way because of and in spite of them. It meant so much to finally hear it out loud from her.

I totally got what Sam meant when he tearfully expressed what it meant to him to hear that his father was proud of him. It’s that big of a deal.

It’s something that should be expressed out loud and often to our children. I try to convey my sense of pride in my own children as often as I can. I would rather not wait for them to be an adult to know how I feel about the people that they are and are becoming.

• I am proud of my daughter Holly because although she was the angry teenager from hell, she has become an amazing, talented, creative, young woman and mother, taking responsibility for her life and the life of her child.

• I am proud of my daughter Zoë, just on the cusp of adulthood. Just recently she received an acceptance letter from the university that was her first choice…and her second choice…and her third choice. Wherever this next great adventure takes her, I have no doubt that she will make it a lively, fun one. She wants to be a writer someday. Her writing already amazes me.

• I am proud of my daughter Abigael. She is so different from me and I have to confess that sometimes I just don’t get her. She is self-assured and confident, comfortable in her own skin. She is not afraid to diverge from the well-worn path and the easy way even if it is the popular way to go.

• I am proud of my daughter Jodie. Since she was a small child, she has been a driven, self-disciplined person who does exactly what she declares that she will do. She declared that she would get straight As back in first grade and she continues to do so even now as her 8th grade year is winding down. I can’t help but get excited for the rest of her big life plan that she has shared with me.

• I am proud of my son Daniel. In spite of so many obstacles he continues to hop over, crawl under and walk around them one by one. His kindness and charm inspires me to work even harder to be a kinder person.

This (and more) is what I am proud of my children for now. I do try to tell them these things out loud and often. At times they get a little complacent and even annoyed with my parental pride but I know they like to hear it. I also know as they continue on into their own adult lives, they will have the seeds of their parents’ pride already sown deep in their hearts.

play it again: compassionate responsibility

Daniel and his daddy, January 2010

originally written and posted September 9, 2008:

It is no secret that my son Daniel is developmentally disabled as a result of his extreme premature birth. I have blogged about his physical, emotional and mental struggles and his triumphs all the time over the last four years of blogging. He has come a very long way from that day when he fit from head to rump perfectly in my right hand and he has much more of a difficult, incredible journey to travel. I can’t be prouder or more nervous for him as he faces each day of his amazing life. I imagine any parent of any child with special developmental or medical needs feels the same way that I do.

Recently I overheard a conversation between two young mothers about their reasoning for not expanding their own families…okay, I was eavesdropping! Anyway, the young ones both concluded that although they love being mommies and would love to have more babies they just can’t because what if the next one is (cue soap opera tense moment music) “damaged in some way like retarded or something?” They go on to agree that it is just too hard and too much for any family to take on this responsibility of a damaged child and since there are no guarantees…

Oh yes they di-id!

Believe me, I so wanted to whip around and offer more than my 2¢ worth. These dumb bunnies desperately needed to receive some of my mind’s spare change whether they wanted it or not. But I reigned myself in. I remained silent in the knowledge that, like my t-shirt that I was wearing stated, I was blogging this!

Really, people like this can’t be judged too harshly. They are clueless because they haven’t lived anything but their own sheltered life. They have no idea of anything other than their own meager existence. Permit me, if you will, to offer a glimpse into the life of just one family raising a school-aged child with developmental disabilities.

We have our bad days as we see our child struggle with dressing  and other, more personal self care activities that most kids his age accomplish without any help. We have the days of total, complete frustration just trying to complete the weekly first grade homework packet. Those days we also have a moment or two of gratitude that someone at his last IEP meeting had the foresight to suggest homework expectations be amended to allow for a slower, self-guided pace on an as needed basis. We see how hard he struggles to “keep it together” when he is sensory overloaded in the chaos that is the school playground before and after school. Some days we aren’t sure how we feel when we come to learn that his struggles and triumphs are fodder for yard duty moms’ gossip on campus. Yeah, he is amazing in spite of all his obstacles but stop talking about him like he is a freak of nature, I want to rage at them.

We have the good days too. When he asserts his preference for how he wants to wear his hair or what shirt to wear we are proud that he knows what he likes and can voice it. One day he very quickly reads through his weekly sight words with no prompting at all and we just squeal with delight on the inside. He confidently figures out his math word problems and we are amazed. As he bravely takes on the arduous task of spelling and writing his surname we quietly cheer on his determination. It is a freaking long name for any first grader to learn how to spell and write…just ask his four “normal” sisters.  When we hear his teachers describe all the things he is accomplishing in the classroom we just want to jump up and down and cheer. Sure he has miles and miles to go but just look at him.

What an amazing boy he is!

This week, even more amazing to me is his compassionate heart. At the end of the school week last week I found in his backpack this award.

According to his teachers, Daniel took the initiative to reach out to a friend in need. One of his classmates had gotten into a bit of trouble and was disciplined. His teacher tells me that the poor boy was devastated that he had gotten into trouble and was on the verge of tears. Daniel, witnessing this, walked over to his classmate and put his arm around the boy’s shoulders and whispered, “It’s okay friend.” He then walked his friend over to a free play area of the classroom and got his classmate engaged in a new activity. The classmate’s transgression was forgiven and forgotten. Daniel reached out to reassure his friend of this Room 1 absolute truth. Mrs. L reported that Daniel’s reaching out to a friend in need touched everyone. As she said to me, we all should have the compassionate responsibility Daniel has.

What an amazing boy he is!

Make no mistake, life with a child with special needs is filled with good days, bad days and truly amazing days. This was one of those amazing days. My son taught an entire classroom, teachers included, compassionate responsibility. What family wouldn’t celebrate a day like this?

Want to know more about life with children with special needs? Take five minutes.

shout out today is for a mommy fail

You love them. You willingly lie in bed for 99 days straight without batting an eye and regularly inject yourself with medication that doubles your heart rate just so they can be safely born at full-term. You feed them. You defend their right to climb into your bed at night in spite of Daddy’s objections because you truly believe them when they tell you monsters are under their bed. You train them up. You teach them right from wrong. You drag your sorry butt out of bed at 5 am to fix their hair for a performance live on a local television news show and this is the thanks you get…no, they don’t shout out, “Hi Mom!”. They don’t even shout out to Dad, who drove them to the dance studio and then rushed back home because they had the wrong jazz shoes. No they don’t. But they do dance well and make the reporter look, um, okay.

I know, it could have been worse. She could have told you how excited she is to hear that Jersey Shore is coming back for a second season. Oh wait…that was one of your other teenagers today.

Let’s just accept today as a big, fat mommy-fail, okay? Okay.

Jurassic Park under The Big Top

Have you ever noticed the way a curious toddler can resemble a velociraptor?

They are so quick to adapt and figure out just how to get what they want.

They’re like velociraptors in a cute, cuddly toddler way, of course.

If they can’t quite manipulate the door knob to open the pantry door to get to their intended prey of yogurt-covered raisins, they can always beguile you with their oh-so-innocent gaze.

Or their sweet smile. One way or another, they will get to their prey.