the last week


It’s going to be a short week. It’s going to be a busy week. It’s going to be a hectic week. It’s going to be an emotional week…so many feels…there’s no getting around that. It’s going to be a happy week. It’s going to be a week of graduations, celebrations and lots of pride…so much pride.

Let’s start it off right with this.

I can’t imagine never not being amazed with this kid of mine. I imagine that he will soon grow tired of my amazement because he is almost a teenager as he likes to remind me pretty much every day. That’s okay. He can do that. I, in turn, will always marvel over the miracle that he is because, trust me, sitting by his bed every single day of those 132 days in the NICU watching over him the last thing his father and I could imagine was moments like this. Living through all those days filled with so much pain, anxiety and hope we kind of earned the right as NICU parents, because although we left the NICU with our baby boy 12 years ago, the NICU never leaves us. So yeah, we’re just a little bit emotional and over-the-top proud of this amazing, miraculous child of ours.

He’s proud too.

He should be. He worked very hard all year long for this.

Of course his teachers, aides and even the principal are proud of him. I like that you could see that pride reflected in the faces of his teacher and his principal as he accepted his awards today. I know that his principal gets just how remarkable all of this is for Daniel and for us. Having sat with her many times in a NICU years ago caring for her baby and supporting her I know that she knows.

And now there is literally only three more days of school.

 

just saying hi


You know how when you are having just one of those days where your head is dully throbbing or perhaps that crick in your neck is just a little bit tighter? Or maybe it’s one of those days where you are fighting that eye twitchy thingy that happens when you really don’t want it to happen. It’s just one of those days.

Then suddenly you look out the window and…

Of course you smile. How could you not. Heck, I smiled and I wasn’t even there to witness the random Smiley-face balloon that floated into JP’s Memorial Garden just outside of the NICU where I work because…WOW!

Hurray for social media! Thank you to my fellow colleague who shared this moment.

It’s been nine months.

How is that possible?

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