Quiet Storm Makin’ It Rain

Posted on October 8, 2013 by Andy Chrestman

Fellow Who Dats,

Now that we have started the season 5-0, I thought it would be a good time to share a heartwarming story about crowd favorite Marques Colston, aka “The Quiet Storm.”

A few weeks before Kohl was born, I decided to paint him a picture for his room.  My next door neighbor Frank, who has twin boys, had recently taken up painting as a hobby and made some pretty good quality pieces for their room.  And so I embarked on my artistic journey, picking up the canvas and brush for the first time since school and set out to paint Kohl something special.

I went next door and linked up with Frank, a fellow Marine, and began to paint with him.  “That’s cute guys,” another friend that was over there said mockingly.  “It’s ‘arts and crafts’ time.  Are ya’ll gonna watch ‘The View’ together next?”

But like any good artist, we would not be denied by such cheap criticism.  I sat down and contemplated starting with something such as a tree or a bird.  But instead, I opened up the sports section to see a picture of Marques Colston catching one of many touchdowns scored against the Panthers the previous weekend.  It would be a difficult thing to paint, but nothing worth having comes easy as they say.  And what better way to begin young Kohl’s indoctrination into Who Dat Nation than to adorn his room with such a masterpiece?

Unfortunately, a masterpiece it would never be.  The piece, entitled “Quiet Storm Making It Rain,” received no critical acclaim, and its reviews were mixed:

“That’s pretty good.  For a sixth grader.”  — Reuben Chrestman

“The most important part is that you tried hard.”  — Mary Ann Chrestman

“It’s really not that bad.  I’d say maybe seventh grade level.”  –Anonymous NICU nurse

But despite its below-average quality, it became a source of comfort for us after Kohl’s unexpected challenges at birth and hung inside his room at the NICU the entire month he was there.

Fast forward approximately 18 months, and my sister Allison gave me one of my all-time favorite gifts.  Shortly after my 33rd birthday, I opened an envelope from her with the following poem inside:

In honor of your birthday, we wanted to do something really sweet.

When you find out what it is, we hope you think it’s really neat!

We had to take something of yours and borrow it for a bit.

When you find out what it is, we know you won’t throw a fit!

We took this little something for a ride in the car, but don’t worry!

We’ll get it back again and we hope it’s in a hurry.

For today, we have nothing to show, but thought with this poem,

We’d tell you all you need to know.

You see, young Andy, we took a painting created by you!

You know the one.

It sat in Kohl’s room at the NICU.

This is not a joke, so please don’t start to laugh.

We got the “Quiet Storm” to give you his autograph!

Much love and Happy 33rd Birthday,

Allison, Mark, Ellie and Tripp

Information:

Your painting was stolen from Kohl’s room the other day.

But, don’t worry, it’s not too far away.

It was taken (using lots of TLC) to Chuck’s Sports cards, in Albany.

Chuck is going to call as soon as he can. You will get your painting back.

That’s the plan!

This little adventure, it was no walk in the “parques”. But, it was so well worth it, to have your painting signed by Marques!

Colston signed the painting, read the poem aloud to his wife and child and took it and a picture of Kohl and a brief note about his background with him when he left.  Kohl has touched many lives in his 20 months on this Earth so far.  I like to think that he touched the Quiet Storm that day.

Who Dat



Posted in Musings | Leave a comment

Just A Little Patience

Posted on August 23, 2013 by Andy Chrestman

While catching up with an old friend recently, after exchanging the usual pleasantries, the conversation turned to Kohl.  After asking the standard “how’s he doing” type questions, she hit me with something unexpected.

“What’s the biggest lesson he has taught you,” she asked.

The question caught me a little off guard, but I was surprised at how quickly I answered it.

“Patience,” I responded, almost automatically.

Kids are wise little people who tend to teach parents fundamental virtues we have always known about, but about which we need constant reminders.  Kohl is no different.

Yoda, Dr. Phil, Mr. Miyagi, you are all wise in your own right.  But you have nothing on this guy.

I believe patience is one of those virtues all parents re-learn, particularly when their kids reach the toddler and talking back stage.  Kohl is not mobile yet, so is he not exploring the wonders of fireplaces or sharp objects in the kitchen.  Nor is he vocal, so he is certainly not talking back to us (yet).  Those are the ways new parents typically have their patience tested.

But Kohl has taught us patience in many other ways from the old food strike of 2012 which was not resolved until April of 2013 in the form of a G-tube.  Or his outright refusal to use his hands for any functional movement.  Then there are always the sleepless nights he causes which, thankfully, occur far less frequently than they used to.

And the ultimate test of patience, with which every special-needs-parent is familiar, is seeing your child fall behind the curve in just about every measurable category of childhood development.  But comparing your child to others is a bad idea under any circumstance and an even worse idea when you have one with special needs.  It is a natural tendency that we are all guilty of at one time or another, but it is a dangerous, self-destructive approach.

Which is why Kohl’s preferred approach is for us to remain positive and simply celebrate the wins along the way, no matter how small they seem.  And to recognize the fact that these little people are magnificent creatures that will reach milestones at their own pace, but are nevertheless capable of awe-inspiring things.  That is something we need to be reminded of constantly.   So it’s a good thing we have this sage little fellow to do that reminding.



Posted in Musings | Leave a comment

Stand, Pelvic Thrust, Walk

Posted on August 15, 2013 by Andy Chrestman

The Marine Corps has a formulaic method of training it likes to call the “Crawl, Walk, Run” method.  Basic principles like shooting, fighting and being an overall badass are presented slowly at first, using a building block approach, as each training block advances on the next.  It mirrors the way most of us learn to run – first by crawling, then by awkwardly walking and finally running, some faster than others.  While this has been an effective means of making the Marine Corps the finest gun club in the world and how the vast majority of us learned to walk and run, Kohl has no patience for such an approach.

That is why instead of the crawl, walk, run method, Kohl subscribes to the stand, pelvic thrust, walk method. For his first few months of life, Kohl was basically on par with all of the normal developmental milestones.  But after about three or four months, he started to drop off.  As the days, weeks and months passed by and each milestone went unmet, we experienced a slow but steady series of disappointments.  We would make excuses at first and try to put a positive spin on things.  But we eventually stopped sugar coating and the reality that Kohl was going to have some significant developmental problems began to set in.  This manifested slowly, but we would get occasional gut checks on how far behind Kohl was and is whenever we would visit with friends with kids around the same age who were the same early on but light years ahead now.  It was a tough pill to swallow.

But Kohl frequently reminds us that you should never compare your kid to others because each child is different. That is probably a cliche in the childhood development world, but it is true.  This is particularly so in the world of children with developmental delays and disabilities.  Sometimes this is a hard truth when you see your child falling so far behind his peers in every developmental milestone imaginable.  But sometimes it is truly magical how special and individual these little people can be.  Kohl has shown us this in many ways, and his journey towards one day walking unassisted is but one example.

While basic motor skills such as rolling over unassisted, reaching for objects and crawling continue to elude the little guy, he does not let it discourage him.  Instead, he just skips things and chooses the most efficient method.  Why bother reading the instruction manual first if you can just put the shit together?

And so Kohl’s journey to unassisted walking has begun.

First, he discovered that he likes this whole standing thing.

After he got bored with just standing, he started doing what appears to be either pelvic thrusting or handling an invisible hula hoop.  Sadly, he has not allowed us to photograph or video this little gem of a development.

Not long after that, he was pounding raw eggs like Rocky Balboa and doing some road work.  He is not at all a fan, however, of the treadmill or the harness that straps him to it.

But with the help of Ms. Jenn, one of Kohl’s physical therapists, he has adopted the philosophy that “what does not kill you will only make you stronger.”  Or was it “pain is weakness leaving the body?”  Something like that.

Once he dominated the treadmill, he skipped low-key walks in the park for more intense experiences such as scaling Monkey Hill at Audubon Zoo, the second-highest point in the mountainous terrain of New Orleans, Louisiana.  He is shown here after his summit with a little assistance from two sherpas:

We hope that one day he will be able to walk by himself.  Something tells me he will.  Until then, we will enjoy the adventure.



Posted in Therapies | Leave a comment