asshattery and other pre-existing conditions

Just in case you missed it, Jimmy Kimmel last night shared details on the birth of his son, Billy, in a teary, emotional monologue. Oh my goodness, a person has to have a heart of stone or no heart at all, and definitely no soul to not be touched by what Kimmel shared.

Ahem, Joe Walsh. When it comes to being heartless and soul-less, you never disappoint.

It is indeed the longest hours of your life when your newborn son has to have emergency open heart surgery. I’m reminded of that every time I see the scar that remains on my teenaged son’s body from his open heart surgery. Kimmel is right too in the statement:

We were brought up to believe that we live in the greatest country in the world, but until a few years ago millions and millions of us had no access to health insurance at all,” he said. “You know, before 2014 if you were born with congenital heart disease like my son was, there was a good chance you’d never be able to get health insurance because you had a pre-existing condition. You were born with a pre-existing condition and if your parents didn’t have medical insurance you might not live long enough to even get denied because of a pre-existing condition. If your baby is going to die and it doesn’t have to, it shouldn’t matter how much money you make.

If only congressmen like Mo Brooks, Alabama’s 5th District, could understand that good, clean living’ does not guarantee someone from pre-existing conditions.

If only there was a cure for such asshattery!

If only

Little Billy Kimmel has just begun to live and has done nothing but live a good life. One might argue that he peed on his mother the other day, but it is the rare person who changes a newborn baby boy’s diaper who does not get peed on. Billy Kimmel is leading a good life – and now has a pre-existing condition. Daniel, my son, is arguably the most good and kind person I have ever known. He has lived a good life for fifteen years now – and has pre-existing conditions secondary to his extreme, premature birth. Both boys enjoy having health insurance right now thanks to their parents – whether or not they realize that they are enjoying having health insurance.

Joe Walsh, Mo Brooks, and every other member of Congress and their families, enjoy the guarantee of health insurance for their lifetime, regardless of any pre-existing conditions they might have – including being asshats.

Meanwhile, I will be walking this weekend with my colleagues and NICU graduates and families whom I have been honored to care for. If you want to offer your support for my walk, I thank you from the bottom of my heart.

March for Babies

the one he chooses

Just in case there is someone out there who hasn’t followed this circus life in the last year,

MY YOUNGEST CHILD IS GRADUATING FROM 8TH GRADE IN MAY!!!

Earlier this week, we attended a Welcome to High School meeting at the high school he will be registering for later this month and, again, I was overwhelmed with way too many emotions.
..my son…my miraculous son…my LAST child…HIGH SCHOOL…HOW IS THIS EVEN HAPPENING??!!
And then I was reminded that 8th grade pictures were due for the yearbook…the BABY pictures of the graduating 8th graders. Again came all the feels…just re-read the above.

Experience with the four siblings before him has taught me the importance of choosing the right baby picture because EVERYONE will be seeing that picture. Nakey baby, baby covered in food, dirt or gawd knows what, potty training baby or baby wearing anything that is not a legitimate hat upon their head kind of pictures are NOT ever the pictures that should be submitted for the baby pictures page…NO MATTER HOW CUTE! When in doubt it is best to consult the teenaged human child…always…trust me. But while it is important to consult the young graduate, it needs to be properly timed because adolescent angst and moodiness is everything and absolutely not the time to ask for their opinion.

I forgot and asked him anyway.

He shrugged and walked away.

While waiting for the right moment, I crowdsourced the question on social media. Everyone is OVER talking about politics and a thin-skinned president so why not?

For yearbook they want 8th graders’ baby pictures. Do I share the pic when he weighed 1 pound with all the tubes sustaining life or find a chubby baby pic when he was much older?

The response? 35% voted for the micro preemie, 28% voted for the “normal looking” chubby baby and 37% voted for him to choose. The biggest surprise for me was who voted for the chubby baby picture.

He was an adorable chubby baby…once he grew into a chubby baby with the help of a feeding tube in his belly and continuous, high caloric tube feedings. I imagine the chubby baby voters wouldn’t want to see the gastrostomy tube coming out of his stomach or the kangaroo feeding pump that was his shadow during those early years.

He was a beautiful micro preemie too. I wasn’t the only one who thought so during his 132 days in the NICU.

Looking through all the pictures of Daniel, as a micro preemie, as a growing baby and toddler, it is very hard for me to decide. I can’t decide. I ask him again, and, the sun and the moon and the stars were perfectly aligned so that he was willing to offer his opinion.

When I was tiny.

When you are tiny with all the tubes and wires attached to your body.

Yes. I’m a miracle. I want the tiny baby picture.

So he chooses and so it shall be.

 

the moment where we ask how did this happen

I’m really glad to be fifteen, Mom. And you know what the best part is? I’ll get to get my driver’s permit and practice driving. 

Why does my favorite son now imagine that this is the time to take a page from a sister’s, or another sister’s adolescent life story to give me heart failure?

True, today my son is fifteen; which makes us all old here. Remember when I first began this adventure and he was that adorable sweet-faced three year old?

Me too.

Well, he still has a very sweet face.

A sweet face with the shadow of a mustache and peach fuzz and baritone voice that reminds me that he thinks the best thing about turning fifteen is he will soon be able to get his learner’s permit…in six months and one day and AFTER he completes driver’s education which will be offered in his freshman year next school year.

SIGH!

I look at this young man I call son and am reminded that the fact he is alive is a miracle. Will I ever not pause to honor the memory of that early morning, the day that he was born? How tiny and fragile he was and, at the same time, how strong he was?

Likely never. Sorry, son.

But today I celebrate that day and the young man standing before me. Happy birthday my favorite son!

 

the adventure science

It’s Fall Break y’all which, here under The Big Top, means adventure time and because it literally only took me FIVE tries to have a kid who likes wandering aimlessly around a museum; we are off to explore…

Explore SCIENCE! Science because someone is really digging 8th grade Science making things move and soon, blowing stuff up – code for setting off rockets.

I kind of like science, Mom. I like it a lot. 

He tells me this often.

Literally every time we sit down to work on science homework.

The Tech Studio where we begin and create with high school students from Japan and help them practice their English language skills.

The view from space

Embrace Baby Warmer Yeah, this meant a lot to both of us because ex-micropreemie, NICU grad, NICU mom, NICU nurse.

Engineer multi-colored bacteria, like a boss…yes, he wanted to immediately wash his hands after admiring his handiwork.

Equipped with his five senses, man explores his universe around him and calls the adventure Science. ~ Edwin Powell Hubble

It’s an adventure…an exhausting adventure.