things that don’t go together


A weekend in a hotel for the Hollywood Vibe Dance Convention and Competition and YOU have to study and take the online portion of your Neonatal Resuscitation Program renewal test. Doesn’t that sound like a workable thing? Oh, I forgot, you are bringing along your 12 year old boy because your darling husband is working through the weekend. You know, the sweet boy of yours with sensory processing issues? Don’t forget that your grandgirl, who also dances, will be there for part of the weekend too.

No! YOU thought this would be totally easy and doable.

Of course you did. Until you got there at the hotel…where the dance convention is being held…crowded with lots of other families from lots of other dance studios there…with lots and lots of very excited kids because OMG!!! Kent Boyd is here too!!!! A lot of dance moms were overly excited too. Still, you imagine this will be doable. The kids will be in dance classes from 7:30 AM until well into the afternoon and then they dance competitively through the night until around midnight all weekend long. You’ll have time for sure you tell yourself.

Heh!

Did you forget the son you brought along?

But there’s a pool. He can swim. He has video games. He can keep himself entertained while you are studying and logging on to take that 9 part test. He’s a good boy. Your husband will be picking him up Saturday afternoon. You end up repeating that last sentence over and over again because he is a 12 year old boy and the last thing he wants to do is entertain himself. Your husband will be picking him up Saturday afternoon…

Did I forget to tell you that there is a hockey tournament happening here too and there are all kinds of hockey teams here with hockey players the same ages as all those dancers? Oh, and with hockey teams come hockey parents. Hockey parents who are more than okay with letting their kids play hockey IN THE HOTEL ROOM NEXT TO YOURS in the evening…until you asked them not to because it sounded like someone was being murdered in the next room which distracted you from studying and REALLY stressed out your 12 year old…the one with sensory processing issues. Apparently hockey dad didn’t think this was a problem until you told him that you thought that it might be…so he sends the kids out into the hall to play hockey. Yes. Because apparently on every floor there are kids playing hockey. They are also playing hockey in the hotel lobby too while their parents are doing celebratory shots Saturday night because their kids won the tourney.

YEAH Junior Kings!!!

Did I forget to tell you that the Internet connection is very spotty? The Internet connection you have to pay for because of course this hotel isn’t going to offer complimentary wi-fi to their guests.

So the connection keeps dropping while you are taking your test. There are hockey games, loud hockey games happening everywhere. Your son wants to go back to the pool an hour after he decided that he was tired of swimming but can’t possibly wear the swim trunks he wore because he wore them and they are wet. Any parent with a kid on the Spectrum gets that. If you don’t get that all I can say is, I’m sorry. Your grandgirl is REALLY upset because she can’t go swimming because her day is filled with dance classes and dance competition. You’re very thankful that your dancer is old enough to get herself to and from her dance classes but there are still the dances she is dancing in…and the grandgirl is dancing in. What kind of dance mom/mima would you be if you didn’t watch these kids dance?

You know what? None of this mixes well together at all.

Not.

At.

All.

So the next time you find yourself in hotel with your kids for a dance convention and there are also lots of hockey teams there too with hockey kids and hockey parents and you have work you must do for work that requires Internet access DON’T DO IT!!!

Just don’t.

Dance convention and competition is enough. It really is.

I know that my dancers think so. Hang in there girls…only five more hours to go then we go home.

YEAH!

Excuse me, I have to get back to trying to take my test before the wi-fi cuts out again.

 

the awesomeness of hugs


I’m not much of a hugger.

Analyze that.

But true story, I’m not. Still I have learned to try to love hugs. And I do. I celebrate them.

Comforting hugs when you have had an eye-twitching, craptastic day.

Hugs that you enjoy with your Grandmom.

Hugs that you enjoy with your favorite cousin and your favorite Uncle Jesse.

Hugs you share with your favorite little brother never fail to warm your heart and make you smile because he is a hugger.

And who doesn’t love birthday hugs shared with your best friend at Disneyland?

Then there is one of the bestest hugs I have enjoyed recently which I do not have a picture of. You’ll just have to trust me that it was one of the best ever…a hug shared with one of my co-workers…a co-worker whom I always hug when I see her because that is what we do before we start a night in NICU-Land. A little more than a year ago she left the unit to fight a fierce fight. Honestly cancer picked the wrong person to fight with because after all that she has been through and all that she has to live for I knew that it wouldn’t be a fair fight. I knew that it was going to be a great night taking care of the tiny humans whom  I love so much in the NICU when I saw Brenda walk into the unit for the first time in over a year.

We hugged. We cried. We tried to fix our makeup. We laughed. We hugged some more.

I have no photo to share but I can guarantee you that it was a beautiful, wonderful picture that will last forever in my heart and my mind. If you close your eyes right now I bet that you can see it. Amazing, gorgeous! Isn’t it?

I am so unbelievably happy knowing that I can look forward to Brenda’s hugs before night shift in the NICU again.

play it again: the most massive character


I have come to believe that our scars reveal just how strong that we are…how amazing we are…how wonderful we are. I have my son and every single scar on his body to remind me of this truth. Again I am in awe of every single tiny, mighty micropreemie I have been privileged to know and care for thanks to my own.

Originally published September 9, 2013

Daniel came to me the other day and lifting his t-shirt pointed to a circular, pale, silvery scar on his belly just below his old gastrostomy scar.

What is this?”, he asks me.

It’s an old scar from when you were in the NICU, when you were a tiny baby.

But what is it from?“, he presses.

From a transcutaneous monitor. It was used to measure the oxygen and carbon dioxide in your body so the doctor could adjust the machine helping you breathe when you were very tiny and wasn’t big enough or strong enough to breathe on your own. Your skin was very sensitive so they had to move the probe around often or it would leave a mark that was shaped like a circle. That is a mark left behind by the monitor.

He thoughtfully traces the silvery circle-shaped scar on his belly. I can tell he is still wondering about it.

Do you want to see what it looked like on your body? I have a picture.

Oh yes!

So I pull out the little photo journal I have that documents his NICU life in pictures and in words.

He regards the picture, carefully tracing the TCM probe on his back just above the tiny diaper that he wore.

Do I have a scar like that on my back too?

No. The one on your belly is the only one.

He shrugs and then begins to read out loud the words I copied from the nurse who took that picture.

I have a lot of scars, don’t I?

You do. Every single scar shows just how strong you are. How amazing you are. How wonderful you are. I love every single scar that is yours.

He smiles and hugs me tight. “I kind of like my scars too!

Out of suffering has emerged the strongest souls; the most massive of characters are seared with scars.

~Khalil Gibran

play it again: raw devastation


I hesitated re-posting this because as time goes on, as more has been discovered, our NICU family is still reeling in the shock of it all. But this was the most popular post of 2013 as it was shared over and over again amongst my co-workers and colleagues of Dr. Janet Pettit’s and friends and family of both Scott and Janet. Clearly my thoughts written down soon after learning of their deaths expressed a lot of what we all were feeling then.

There are still moments we expect to hear JP tell us to put on our big girl panties and get to work…actually I believe she IS telling us to do just that…all the time…and so we do. Still we mourn because one just does not just get over losing someone, especially someone taken away so suddenly and so violently. But, just as JP would want and expect, we do go on because there is work to be done in our NICU.

Originally posted August 9, 2013

As I type this, there is another smoke alarm chirping it’s low battery alert. I should be annoyed really because wasn’t it just four months ago that batteries were being replaced? Yes, It was just four months ago. I should be annoyed and irritated but instead I am broken-hearted. The chirping reminds me to dig up another 9 volt battery and again replace it. It also reminds me that one of our own in the NICU is gone…gone far too soon.

I saw the news online of the house fire in Modesto that claimed two lives and well, after thinking to myself how tragic I moved on about my busy day. It was later in the day that I discovered who the victims were.

I am still raw…as is the rest of my NICU family.

JP…DR JP,  was an amazing gifted and talented human being. Her dedication and efforts to offer her very best in what she did inspired so many to do the same…to always be learning, to always seek to offer the very best of skill and care in our nursing practice in our NICU. It was that dedication and talent that helped our NICU achieve the amazing goal of reducing our non-CLABSI infection rate for an amazing zero infections for 1,412 DAYS! As JP wrote in that ADVANCE for Nurses article, countless babies are now celebrating birthdays that might have been lost without the efforts of our motivated and expert team. Scrolling through my Facebook timeline I can see some of those very same babies with bright, happy smiles as they continue to thrive and grow up much too fast.

We truly are a highly motivated, expert team uniquely gifted in the art of caring for the tiniest and sickest human beings but we are also a family who has lost one of our own in a most tragic way and we are broken with the grief of this loss. My heart breaks for JP’s family, for her kids and it aches for each and every member of my NICU family. I can’t imagine not ever working side by side with JP ever again. Her brilliance, her wit, her calm presence will be sorely missed in our NICU, in our community, in our world.

I should probably summarize this post right about now but I don’t know how.  For now all I can do is selfishly mourn this loss…and pray that I will continue to work hard, work harder to measure up to the kind of nurse and human being that JP was.

play it again: those hormones I warned y’all about


It doesn’t take much to remind me just how lucky, how damn lucky my former 24 weeker, micropreemie is. That is a very good thing lately because…hurray for preteens and their stinky, gross, annoying hormones that are just beginning to bubble up. I’ve survived these kind of hormones four times over. I’ve survived 132 days in the NICU, nine surgical procedures and those sometimes scary, always exhausting early years with a medically fragile infant, toddler and preschooler. I can survive puberty one more time even with all the other special needs added in the mix this time around…I think I can, I think I can…

Originally published May 11, 2013

Oh dear glob they are bubbling up…and they ain’t no female, pms-y kind of hormones either!

My sweet boy, my beautiful son is 11 years old and the hormones are starting to bubble up. No, they aren’t a raging, rolling boil…yet. But they are just at the boiling point and…

I’m not liking it.

Not.

One.

Bit.

I have survived four girls through the transition of child to stinky pre-teen to raging adolescence. This can not possibly be hard for me anymore.

No way!

I’ve got this.

Totally.

I believed that.

I truly did.

I thought wrong.

Oh my goodness! My sweet little boy suddenly is one big gloomy, grumpy, irritated, annoyed person and he is directing that flood of emotions at me…complete with heavy sighs and eye rolls.

WHAT?!?

What indeed, son. We both are wondering what right now. Although I have to confess that my “what” is actually a three word “what“.

Then this comes on.

Oh my darling boy! Not a day goes by where I am not reminded just how fortunate, how so damn lucky we are…

you are.

Yesterday was one of those days. My heart breaks for another family, another amazing, brave and strong one like you. So I close my eyes and cry hot tears while I offer up a quick thanks for you…and say a prayer for the other. Then I say thank you for these hormones that are just beginning to bubble up to a boil because I get to experience them…again…with you.