A Little Premature

For this month #Architalks post, well let’s be honest, this is really the December and January post, we were tasked with the subject of “New year, New______”.  So I have spent the last month and a half or so pondering what I was going to come up with for this one. You see, I don’t do New Year’s resolutions. Never have. When I have a goal I am working for, a date on the calendar means very little to me, I just work to get to that goal. Sometimes it’s fast, sometimes not so much.  Well that brings us back to coming up with a subject for this post, do I talk about a renewal of focus, a reevaluation of ones health, or some similar idea that is so common this time of year.  Ooooof, making decisions is supposed to be one of the things architects are good at.  As it happens, about a week ago, we got a reminder that the deadline for this post was quickly approaching.  It came with its typical instructions and reminders, but there was a bit of information this time that cut through all the confusion and reminded me that there are some things that are more important than architecture.

I’m going to break protocol here, and talk about something where the architecture has little if anything to do with the story.

A Little Background

I met my wife to be while I was an undergrad, and we got married fairly quickly into my college career.  This led to us having a lot of time to be a married couple where we could focus on our education and each other. It would be almost a decade before we even considered growing our family. Ok, let’s be honest, it was more me than we. But times change, and eventually I got over that fear of what was to be. After a while, we were expecting our first child, and with that came all of the typical preparations you would expect. Doctor visits, stocking up of supplies, baby-proofing the house, you know the drill.

 

Days turned into weeks, weeks turned into months, and everything seemed fine.  I know, you see that “seemed” word and you automatically think, “Oh my gosh, what happened?”  Through all of the Doctor visits, it just seemed that our baby girl was not growing as much as she should. Everything seemed fine, just small. Now, quite a few years have passed, but they figured out why, and I believe they call the term “Marginal Insertion”.  The doctor made sure that my wife was taking her vitamins, and even ended up getting a steroid shot to help lung growth. In fact to complicate it a little more, the day my daughter was born, they found out it was Nuchal Cord as well.  Too many medical terms, these are not the terms I’m used to using on a daily basis. Luckily we had a great doctor, and my baby girl was born. 5 weeks early and all 3 and half pounds of her. She was absolutely tiny, we even considered going to Build-a-Bear to get her clothes that would fit.

 

 

The next couple of weeks would be spent in the NICU. Learning how to eat, recovering from jaundice, and simply making sure she would be ok. While my wife stayed at the hospital, pretty much 24/7; I would go to work, go to the hospital, go home late at night to get a couple hours of sleep, and do it all over the next day. Mine was definately the easier of the two.  Through it all, the NICU nurses were great, that hospital facilities were amazing (ok, there is the architecture tie in), and our families were extremely supportive.  In the years since, she has grown to be one of the smartest, funniest, and most amazing kids I know. I couldn’t be more proud of what she has done this far, and look forward to what she will become.

Back to Today

Ok, I’m sure you are wondering, what in the world does this have to do with an #Architalks post.  Well, remember when I said we got a little bit of information that completely changed what I was thinking about. This is what we learned.

 

Matthew Long was born May 29th, 2013, happy, and seemingly healthy. Less than two days later his mother and I found ourselves in an neonatal intensive care unit waiting room, listening to a rushed intensive care doctor explain how our son needed immediate dialysis to save his life. The disease, he briefly explained, was one of a group of disorders called Urea Cycle Disorders, which impact the way the body breaks down protein. We later discovered that Matthew’s particular variant is called OTC Deficiency, a particularly severe form of it in fact, which results in a rapid rise of ammonia in the blood, called hyperammonemia, resulting in devastating neurological damage. This form of OTC is so severe, Matthew has virtually no peers who have survived it. Once the immediate crisis was arrested, we came to find out more about the disease and the impact of this initial event.

The disease is inherited, and the damage is permanent. Treatment consists of a combination of medications, low protein medical diet, and ultimately a liver transplant. Matthew was fortunate to experience no additional hyperammonemic events in the following fifteen months of life, and had a liver transplant on August 24th, 2014. The cure for the disease, a transplant, isn’t so much a cure as trading one condition for another. While we will never risk the chance of another ammonia spike, Matthew is on a half a dozen or more medications at any given time to avoid rejection. Despite these challenges, intensive daily therapy for cerebral palsy (a result of the initial damage), limited motor function, and various other challenges along the way, our son is remarkably happy and has changed all our lives for the better. He’s taught us to be stronger than we ever thought possible, to have faith beyond human understanding, and the immeasurable value of life.

 

And although my experience doesn’t come anywhere close to this, it definately hit home with me, as I hope it does with you. 

As always, check out what the rest of the #Architalks crew had to say by clicking on the links below. 

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Rusty Long – Rusty Long, Architect (@rustylong)
New Year, New Direction

Bob Borson – Life of An Architect (@bobborson)
New Year New Adventures that Might Kill Me

Lora Teagarden – L² Design, LLC (@L2DesignLLC)
New Year, New Goals

Nicholas Renard – dig Architecture (@dig-arch)
New Year, A New Hope

Cindy Black – Rick & Cindy Black Architects (*)
New Year, New Casita

Eric T. Faulkner – Rock Talk (@wishingrockhome)
New Year, New Underwear

Rosa Sheng – Equity by Design (@EquityxDesign)
New Year, New Era

Amy Kalar – ArchiMom (@AmyKalar)
New Year, New Adventures

Michael Riscica – Young Architect (@YoungArchitxPDX)
New Year, New Life!

brady ernst – Soapbox Architect (@bradyernstAIA)
New Year, New Adult Architect

Lee Calisti, AIA – Think Architect (@LeeCalisti)
new race new year new start

Mark R. LePage – Entrepreneur Architect (@EntreArchitect)
New Year. New Budget.

Michele Grace Hottel – Michele Grace Hottel, Architect(@mghottel)
“new year, new _____”

Stephen Ramos – BUILDINGS ARE COOL (@sramos_BAC)
New Year, New Home

Sharon George – Architecture By George (@sharonraigeorge)
New Year, New Business

Emily Grandstaff-Rice – Emily Grandstaff-Rice AIA (@egraia)
The New New

Jarod Hall – di’velept (@divelept)
New Year New Reality

Anthony Richardson – That Architecture Student (@anth_rich)
New Year New Desk

Greg Croft – Sage Leaf Group (@croft_gregory)
New Year, New Goals

Jeffrey A Pelletier – Board & Vellum (@boardandvellum)
New Year New Office

Aaron Bowman – Product & Process (@PP_Podcast)
New Year, More Change

Kyu Young Kim – Palo Alto Design Studio (@sokokyu)
New Year, New Office Space

Jared W. Smith – Architect OWL (@ArchitectOWL)
New Year, New Reflection