because “a child will never starve themselves”

Raising my boy child I have learned to not always rely on the tried and true that helped me to survive raising his four older sisters. Boys are definitely different from girls and extremely premature babies are different from full term babies…even when one factors in the adjusted age that managed to annoy some family members.

In order to be discharged from the NICU after a 4+ months stay, Daniel had to be able to take by a bottle 2 ounces of formula every three hours…2 ounces, 60 milliliters, just 12 teaspoons of milk. Really no big deal except that it was a big deal for him. It was a struggle. A real struggle. Have you ever tried to swallow liquid with one of your vocal cords is paralyzed so they can’t effectively protect your airway and lungs while you swallow?

The struggle was and is real.

Sometimes the baby boy was just too tired and couldn’t drink those 12 measly teaspoons of milk…and sometimes it was just too hard and too scary drinking milk and feeling like you’re going to drown all at the same time. Still Daniel’s nurses and we worked hard to get him home working on that drinking 2 ounces of milk 8 times a day…especially after mommy had a major meltdown and kind of went ballistic with a colleague, who as Daniel’s nurse, made the nursing decision as a well-qualified NICU RN to feed him by a tube into his mouth, down his esophagus and into his belly after he failed to eat 2 ounces three times in a row on her shift.

I just wanted my baby boy to come home…oh, and worst Mother’s Day ever.

But FINALLY, glory hallelujah, he did it three days in a row and he was allowed to come home.

And we thought that it was hard to get him to eat in the NICU.

As the weeks went by it was clear just how real the struggle was for our son as he soon stopped eating…STOPPED.

Paralyzed vocal cord

Trachealmalacia

Laryngealmalacia

Reflux

Chronic Lung Disease

So many things going on with this son of ours all at once that required so much more energy than eating and so he stopped eating…literally…and it became all we ever did…try to feed our baby.

All the time.

Failing at it.

All the time.

We tried to tell the pediatrician assigned to his care until his adoption would be finalized but he was certain we were wrong or perhaps not feeding him on purpose because “A baby or child will never starve themselves.

A very small part of me silently cheered when Daniel proved that know it all asshat wrong refusing to eat for over 36 hours with nurses trying to feed him when he was hospitalized with a Failure to Thrive and Munchausen’s by Proxy diagnosis. But only a small part because the only alternative was feeding him by a tube…

for the next four years.

So much work to teach him how to eat, how to safely chew and swallow without food or liquid going into his lungs…how to trust that he could do this…to not be afraid.

And we thought bottle feeding him was hard.

OMG!

Some days we literally were crying and screaming inside, “You have to fucking eat!

Okay, most days.

Actually every day.

And eight years later we still do sometimes.

Thank goodness it’s no longer every day because even he now understands that You Have To Fucking Eat.

Definitely not a children’s book. I recommend you read it while drinking a Scotch neat…read the book and you shall understand.

 

 

 

 

just in case you ever wondered

If you were to ask me what is my favorite book I would not be able to tell you. A favorite book…book…singular book?

Impossible!

There are just too many for me to name for you.

But if pressed to share one title, just one I would share with you a children’s book I grew to love as I read it to my own children, Just In Case You Wonder by Max Lucado. I loved this book so much I even illustrated it with pictures of my own girls making it their own book.

Just in case you ever wondered.

I’ll always love you.

I’ll always hug you.

I’ll always be on your side.

And I want you to know that…

just in case you ever wonder.

I just love the words in this book and the sentiment they express. It’s kind of like Love You Forever except not in that crazy, creepy, helicopter, stalker-parent kind of way. Now that my kids are older, more than ever it is a sentiment I want them to always keep in their hearts.

I’ll always love them.

I’ll always hug them.

I’ll always be on their side.

There is so much more I want to do for them…wish that I could offer them that I never can…unless I were to win the lottery…if I played the lottery.

But I can promise them that I will always love them.

I will always hug them.

I will always be on their side.

Always.

Especially now.

Just in case they ever wondered.

NaPhoPoMo day 14

gold

Books are gold.

Nothing else really needs to be said.

It’s that kind of day. You know, where know matter what you say or the fact that you are right and that you can even show that you are right in black and white you remain the one who is bringing on negativity…blowing things way out of proportion…and on and on. Honestly, I don’t wish to waste my energy on such drama-trauma that really isn’t all that dramatic or traumatic. No, I’d much rather curl up with this kid and read a book.

NaPhoPoMo day 6

it’s Stephen King’s fault

Completely random truth:

I’m kind of afraid of my garbage disposal. Anyone who has ever read Firestarter and remembers what happened to Dr. Pynchot will understand. You’ll never see me pushing things into the disposal with my hands.

Thanks, thanks a lot Stephen King!

Yes, I know that my sink is dirty. Yes, I scrubbed it clean…after I turned off the garbage disposal.