Some Things I Love About You

Mommy,

‘Sup?  Kohlito here.  What’s shakin’? Crazy weather we’re having lately eh?

Ok, enough small talk.  Let’s get down to business. It’s your second annual Mother’s Day.  What I like about Mother’s Day is that it causes me to reflect how much I take you for granted the other 364 1/4  days of the year.  (The “1/4” is because of Leap Year).

Anyways, I spend a lot of time vomiting on you and forcing you to wipe my anus.  I want to make sure that amid the heaps of bile and doo doo that you deal with on a daily basis, you do not lose sight of the fact that you are my special lady.

So without further ado, here are a few things I love about you.   But one qualifier before I begin.  This is, by no means, an exhaustive list.  Literally chronicling everything I love about you would be an incredibly difficult – nay, impossible – undertaking.  That said, here is a sampling of what comes to mind:

Your voice: Dad often observes that when you get fired up over things like people choosing not to vaccinate their children, why Katy Perry is famous, or the latest partisanship on Capitol Hill, your voice can reach a pitch that is capable of shattering any glass within a 7-foot radius.  But I happen to like it.  Perhaps because of that primordial connection between mother and son, your voice is like music to my ears.  It soothes me, it pleases me, and it is oftentimes the only thing that will stop my meltdowns.

Your kisses: They say that I may have cortical visual impairment because of my brain damage, so any sudden touches of my face are often met with a sneer and sometimes a meltdown because I don’t necessarily see them coming, and they may startle me.  This manifests itself when you pick the boogers out of my nose or wipe my face during bath time.  But I do fancy your kisses.  I may not know they’re coming, but when they do, I know I like ’em!

The way you sing to me:  I’ll be honest, mom.  This is not necessarily one of your strengths.  You also incorrectly assume that singing me certain songs will make me do certain things. Like the time when I happened to finish my breakfast one morning because you sang me Taylor Swift’s “We Are Never Getting Back Together.”  You came to the conclusion that there was some sort of nexus between this horrible song and my eating properly, which resulted in a 6:15 am serenade every morning for about two weeks which was unfortunate for both Daddy and me.  But you gave it 110%, and I appreciated the effort.

The fact that our hair is the same color.  Daddy likes to always point out how glad he is that I have your hair instead of his.  Don’t tell Daddy this – I mean he thinks he’s a pretty sexy dude – but I’m actually glad that I bear such a strong resemblance to you instead of him.  I mean, objectively speaking, who in their right mind would rather look like this guy:

Or this guy:

I think this portrait that I gave you for Mother’s Day, aside from being a wonderful painting, is also a celebration of our beauty:

The way you let me know how proud you are of me: Every time I reach a milestone, no matter how slight and seemingly insignificant, you are always the first to celebrate with me.  Like when I stood up for the first time, unassisted, at occupational therapy:

I know Ms Brooke was excited.  But I also know I made your day.

The way you love me: I know I have a lot of challenges.  I know this was all unexpected and not exactly what you had in mind.  And I know that I do not always do things at the pace you want me to.  But despite all those things, you love me so well.  You have always been incredibly maternal.  You honed your supervisory skills by taking care of my Uncles Adam, Andrew and Alex growing up.  You dealt with their tomfoolery which prepared you to deal with Daddy’s and mine.  You may not have realized it at the time, but you have been in training for me your whole life.  And I think you’re doing a stand-up job, mommy.   You have so much love to give, and I’m glad to be a recipient of some of it.

Happy Mother’s Day!

Love,

Kohl



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Kohl’s Instructions

Dear G-Daddy and CeCe,

Here are my instructions and requests for my weekend in Lake Chuck.  Please be amenable to them.  I’m available to answer questions at any time, but my preferred time is around 2 a.m.

Waking Up

I like to attack the day.  Therefore I wake up between 630 a.m. and 7 a.m.  EVERY SINGLE DAY.  What, don’t you want to play with me?

Morning Meds

I didn’t want to put this in here, but mean Mommy made me.  In the morning (by 730 a.m.), I begrudgingly drink a bottle and then I fight, I mean take, my medicine.  Be sure to inject it into my cheek and keep me upright.  This helps to prevent me from choking.  I like to play the game of you keeping me from spitting it out.  It’s fun!  Do in the following order to ensure I get the most important meds first.

–        1 mL tegrital

–        5 mL prevacid

Feedings and Naps

I usually begin my day by drinking a 3-4 oz bottle.  Most of the time, I drink 3 oz and leave an ounce.  I don’t want my parents to think I’m giving in on my hunger strike.  They still haven’t figured out what cause I’m supporting.  Muahaha.  Due to my unfailing hunger strike, I will probably only drink my next bottle when I start to fall asleep for my mid-morning nap.  I prefer to be held while sucking my pacifier.  You will have to “trick” me by sneaking the bottle in after my pacifier.  I will sometimes take a full  6 oz bottle at this time, sometimes I will take less.  If I don’t nap, you can try to feed me about 3 hours after my breakfast bottle.

I should also take an afternoon nap.  The same feeding logic applies here as well.  Again – I may not take a full 6 oz.  I will let you know what I want.  Sometimes my naps are only 30 minutes.  Sometimes they are an hour.  Again, I will dictate how long I feel like sleeping.  I like to be covered by my blue LSU blanket.

Recipe for Bottles:

Breakfast: 4 oz of Pediasure Peptide + 3.5 scoops of duocal + a little miralax (I prefer my bottles shaken and stirred.  Use the chopstick to stir.  Then shake it before serving.  I do not like clumps in my bottles.)

Morning and Afternoon Bottles: 6 oz of Pediasure Peptide + 3.5 scoops of duocal (again, stir then shake)

Bedtime Bottle: 8 oz of Pediasure Peptide + 3.5 scoops of duocal (AGAIN, stir then shake before serving)

Playtime!

I really enjoy lots of standing, and I may even take a few marching steps for you if you’re extra nice to me.  I like to sit up with my hands between my legs so that I can see everyone.  I particularly enjoy rocking and scooting myself in my rocking chair.  Too bad you don’t have one to play in too!  Since I’m so good at kicking my legs, my arms need to be stretched out a lot.  Please raise them over my head and out to the sides. You can also straighten them at any point.  I like to make you work for it.   I’m also pretty good at tummy time where I’ll show you how I push myself up on my arms.  I may attempt to roll over, but again you’ll have to get me started.

Evening Meds

This is my least favorite time of day, but again, mean Mommy makes me.  Mean Daddy is even in on this one.  I fight it so much that it takes two people – one to hold me and then other to torture me, I mean administer my medicine.  This shit goes down at 630/645 p.m.

–        phenobarb: 1 15 mg and 1 60 mg pill crushed together in the pill crusher, poured into the mini bowl, and stirred with chocolate syrup (around 3 drops or so).

–        1 mL tegrital

–        4 mL elavil

Bath Time, Bed Time, and Night Time:

After you have been able to calm me down and stop the hysterics of my evening meds, I will allow you to bathe me.  I prefer a calm and happy spa-like experience complete with warm water and allowing me to kick my legs.  Please wash my beautiful physique – especially my stinky hands.  I don’t want to smell that when I’m snuggling up to go to sleep.  I do not, I repeat do NOT, like to be taken out of my bath into the cold world.  Your best bet is to wrap me in a large warm towel and quickly dry me off.  If you allow me to kick while you lotion me up, I will stop whining – that is until you try to dress me.  It’s easier if you do my right arm first and then my left since it’s looser than my right.

I like to retire for the night between 8 and 9 p.m.  Again, this is the best time to get me to drink a big bottle.  I may take up to 8 oz, but I’ll need to be held upright for a while afterwards.  Sometimes if you put my pacifier in my mouth I will spit up my bottle.  Then we have to go through the whole wardrobe fiasco again, which deeply upsets me.

I prefer my blue LSU blanket and then my fuzzy dog blanket.  My parents think it makes it harder for me to kick the blankets off, but I have pretty strong legs!  I will probably wake up some time between 2 a.m. and 4 a.m.  If you’re lucky I will go back to sleep quickly.  This requires you to give me my pacifier and rock me in my rock-n-play.  Otherwise your next best bet is to put me in bed with you.

Then it’s time to start all over again!  Carpe Diem, G-Daddy and CeCe!!!

Miscellaneous Fun Facts for a Successful Lake Chuck Visit:

–        You will have my car seat so that we can go on fieldtrips.  I particularly enjoy listening to music in the car.

–        Use my hand braces several times a day especially if you see me clenching my hands and keeping my thumbs in.

Alright, I believe that is the end of my instructions/requests.  Remember 2 things: 1.) I’m available for questions around 2 a.m. most nights and weekends, and 2.) I will dictate our activities.  What did you think you were in charge?

Love,

Kohl



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Small Head, Big Heart

A very wise man once observed that parents essentially save their children’s lives every single day for at least the first two years.  What a brilliant way of describing how helpless infants are.  Indeed, if Sarah or I decided to take the day off, Kohl would probably be a goner. Lucky for Kohl, though, we find the time to feed him, change him and basically ensure his survival.

He is very appreciative

And the little man is thriving.  He is on track developmentally and is hitting the few milestones that 2-monthers are supposed to hit. The only abnormality is that his head is a little on the small side, which is consistent with the neurological injury he had.  But it is growing, and that is good news.  Besides, his dad’s head is also abnormally small, and he’s still ridiculously good looking.

In the meantime, Kohl continues to give it 110%.  He was very happy to be coherent enough to meet his Aunt Mary Beth and Uncle Cris who he doesn’t get to see very often because they live in Tulsa.

Aunt Mary Beth has come a long way.  Behind her are the days when she would terrify Kohl’s dad by barging into his room and pretending to be a demon named “Mary Death.”  Now, she is a loving aunt.  People and demons alike are capable of change.

He also went to his first St. Patrick’s Day Parade where got to hang out with his Uncle Adam who might as well live in Tulsa since he has a rare condition in which he turns to dust if he leaves the Garden District neighborhood.

Uncle Adam happily put down his green “punch” during the St. Patrick’s Day celebration to pose with his nephew and, at last, make the blog.

We all continue to hope and pray that Kohl ends up having no residual effects from this neurological injury.  In the meantime, we are enjoying the ride.



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