Our Babies

Our Babies
Luke and Claire

"Welcome to Holland"


By Emily Perl Kingsley, 1987. All rights reserved.


I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away...because the loss of that dream is a very very significant loss. But...if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

Tuesday, May 30, 2017

Tooth, Blood and Lunch: All Lost

We're having a hard time with losing things around Casa de Godinez.

On Friday, I was feeding Claire a snack, and I suddenly noticed that her mouth looked very strange. After a second look, I realized that she was missing her bottom tooth!!! It was just a wee bit wiggly earlier in the week, but apparently I needed to check more frequently.  Loss #1:  Escape artist tooth...never to be found

While I was checking Claire's other loose teeth, monkey-child climbed up on the ottoman to look out the window. Rather than waiting patiently, she tumbled off the side, catching her entire squishy body with her front teeth. Luckily, only blood was lost, and her teeth are all positioned much more securely than Claire's. Loss #2: Blood...lots and lots of blood.

As I was mopping blood off the hardwood floor, Luke continued to complain that his stomach hurt. I attributed it to the crazy end of year parties. Pizza, candy, popcorn, partying, etc. will make anyone's stomach hurt. I told him to go lay down and rest, and he lost his lunch while resting in my bed. Loss #3: Lots of party food in the wrong form.

While we were visiting with Patrick on FaceTime on Monday, Claire didn't want to be outdone by Luke, so she opted to lose her lunch while eating lunch. Guess it hadn't been too much party food for Luke. Parenting fail. Loss #4:  Lunch gone wrong.

So, while we are on this trend of losing things, please cross your fingers that Aubrey and I don't follow in Luke and Claire's footsteps. Otherwise, Loss #5:  My sanity.


Friday, May 12, 2017

Ice Cream

Some weeks, the monotonous repetition of therapy makes me want to scream. But sometimes, there are those perfect moments that make every second of appointments 100% worthwhile.

The other evening we were at Chick-fil-a for dinner. It was dreary and rainy, baseball practice had been cancelled, and I didn't feel like cooking. Luke was able to burn off some energy, we bumped into friends and chatted, and the girls enjoyed their chicken nuggets. When we were packing up to leave, Luke announced that he wanted some ice cream. The line was short, so I told him yes. As I reached over to grab my wallet, Luke held up his hand and said, "No. Stay mom."

He took the dollar out of my hand, scampered up to the short line, waited patiently, and when it was his turn, he looked right at the lady and said, "I want ice cream". Without missing a beat, she accepted his money, gave him change, they chatted and she handed him the ice cream.

For the first time, I didn't have to translate once.

Complete independence.

I'm not sure who was more proud at that moment - me or him. But, I do know that we owe that moment to our amazing therapists - past and present - who work with the kids, convince me it is worth it, and never give up.

Luke enjoyed his ice cream, and I cried the whole way home.




Sunday, April 16, 2017

You've Died of Dysentery!!

Remember Oregon Trail? Nothing was more fun as a kid than sitting at the computer and getting to play the most epic game of all time. The highlight was getting to hunt, actually shooting something bigger than a stupid squirrel. Equally exciting were the horrible things that happened along the journey - oops, broken axle - dad broke his ankle, Timmy drowned while fording the river, your whole party died of dysentery five miles from Oregon!!

Turns out - real life is kind of the same.

Military wives:  you know the curse. We have all been there.....no sense in trying to pretend it doesn't exist because we all know it does. We are officially in the "We made it to mid-deployment, so shit is hitting the fan" phase:

1. I came home from a fabulous wedding in Denver to a very warm house. I asked Grandma if she noticed, and she had not...hmmm...maybe just me. Nope. Opened the back door to feed the dogs to a stream of water pouring out of the secondary A/C drain. Quick visit from a neighbor confirmed that the A/C had a clogged drain. Damage = minimal.

2. CLANK. CLANK. CLANK. My washing machine should not make that noise. Two days after the A/C, the poor little washing machine met an unexpected death. After the guy at Lowe's told me delivery would be 2.5 weeks away, I nicely explained that, "No, it would not." After I provided my sob story of deployment, three kids, and family visiting, I had promise of a delivery three days later. As I was walking out, the nice Lowe's man said, "You're a feisty one, aren't you?" Damn right. Damage = Medium

3. "Um, we're at In-N-Out and the car won't start," Grandma said over the phone while I was at a conference in Austin. Luckily, my friendly car guys down the street gave grandma and grandpa a quick tow, they snapped in a new alternator, and after a few hundred bucks, we were back in business....until I realized my audio system needed me to input the code after the battery was out. Guess I should have taken care of the broken audio knob when I discovered it. Going to the dealer on Tuesday to get that fixed so music and bluetooth can be restored. Damage = Medium Plus.

4. No.....please....anything but the plague!!! Within hours Friday night/Saturday morning, me, Luke, and Claire fell victim to the horrible plague. Unfortunately, theirs both involved violent stomach upheavals whereas mine left me so light-headed that I couldn't walk from one room to another. Aubrey had thrown up once Thursday morning (randomly?), so we are praying that was the extent of her being sick.  The happy news was that it was a very quick moving bug and we were able to make it to Easter brunch....until at dinner-time, Grandma realized she didn't feel good. Victim #5 down. Damage = Substantial (but thank goodness for a working washing machine!)

In the midst of the chaos, I've been in Shreveport and Austin for work, and we're about to head home to Kansas for Mike and Blake's wedding (woot woot!!). So, let's cross our fingers and hope that the bad luck curse has run its course.
















Tuesday, February 28, 2017

Donation Day

For 61 days Patrick and I have sat in hospitals.  That gives a person ample time to think about how they want to live life differently. It also changes the perspective of a "bad day".

We were always one of the lucky ones. Luke and Claire only had breathing issues or needed testing. Patrick and I were not the parents holding sick kids who had to endure ceaseless treatments to battle diseases. After each of our hospital stays, we were the fortunate ones leaving with our kids in our arms.

I am not saying this to minimize our experience, because each hospitalization had a profound impact on our lives - each in its own way. What I am saying is that there are countless parents out there holding their sweet babies right now, crying silently in hospital rooms, wondering why their child has to be sick, and doubting that anyone outside of their immediate family, friends, and doctors even cares what they are enduring.

Each and every day of my life, I stop and think about all the parents sitting in hospital rooms, staring at monitors, praying for different test results. I think of all the poor kids who do not have parents sitting there to hold them as they endure test after test.  During our time in NICU, the most shocking conversation I had with the nurses was regarding the high number of parents who do not even visit their children. I just don't understand.

It isn't much. However, the one tangible thing I knew I could provide was a hair donation for kids who had lost theirs due to treatment. It had been on my bucket list for years, and today -  ironically on National Rare Disease Day - I finally had enough to make the donation.  It is one small thing to let a struggling parent know that while they are sitting there in that dark hospital room, there are others out there thinking of them and their children.








Sunday, February 26, 2017

Tornadoes, vomit, tooth fairy, shamu, and balance: Things that terrified us this week

It takes a lot to scare me. After 10 years as a military spouse, I have come to realize that things are not necessarily as bad or as scary as they may seem. Then, there are weeks like this where nothing bad happened; however, the Godinez clan spent considerable time being scared this week....


Sunday:  Holy hell. When the storm hit around 10:45 last Sunday, I jolted awake.   As the rain and hail pounded against the windows, the only thing I could think was, "What do I do if these windows shatter?" I slipped out of bed and tiptoed across the living room about 10 times trying to decide if I should go upstairs and get the kids. I glanced at my phone to see how much of the storm was left, and I saw a tornado warning for Bexar and Comal counties.

 Crap.

I ran to the tv, turned it on, and instantly I heard, "If you live in north San Antonio along 281 near Timberwood Park, Bulverde, Stone Oak - take shelter immediately. There is rotation. You are in the direct path of the storm." I flew upstairs, gathered 60 lbs of sleeping humans, bolted downstairs, and tossed Luke and Aubrey into my closet. Claire, the child who normally wakes up if you blink too loudly, was still completely passed out in my bed.  I sat there next to her straining my ears to listen for a change in the wind and the windows to come shattering in. Of course things never got worse, and that pesky weatherman scared me for no good reason. The tornadoes stayed south, and everyone went back to bed...except me and Ralphie - we sat on the couch shaking for another hour because he is petrified of storms, and my adrenaline was surging through my veins.

Monday: The only thing worse than the stomach bug is getting the stomach bug while Patrick is away. Claire was sleeping next to me, and I came out of a deep sleep to the dreaded sound of her getting ready to blow chucks. I lunged out of bed and carried her to the glorious tile floor that is MUCH easier to clean at 1:00 am than blankets and sheets. As I sat there holding her head over a bucket, I just kept thinking, "Please don't have the flu...please don't have the flu...I'm not ready for that!".   She went back to bed, and I laid there for an hour trying to decide if my stomach hurt or if I was paranoid of the impending doom of the stomach bug hitting all of us with no other adult assistance.  It was wasted energy - I was fine...Claire was fine - it was just her GI issues acting up. Crisis averted.

Tuesday: Luke loves the idea of Santa or the tooth fairy....unless they are coming withing five feet of him. He lost his second tooth, and apparently, since the first visit from the tooth fairy was when we were in a hotel over Christmas, he had not considered that she had to actually sneak into his room since we were home for this one. Oh HELL NO!!!! That tooth fairy was not coming in his room. We compromised and put the tooth across the room, and he eventually stopped crying and yelling for the tooth fairy to stay away.

Saturday:  Let's continue Luke's irrational fear of non-humans. The logistical hurdle of this deployment is, "Could I successfully take the kids to Sea World with no other adult assistance?" The answer is "YES!!!". It was a beautiful spring day - perfect for opening day at Sea World. The crowds weren't bad, the baggie of chicken nuggets that I smuggled in kept everyone happy, and there wasn't a tear shed until....

Much to my surprise, Luke was ecstatic when I saw "Shamu" walking though the park taking pictures. I asked Luke if he wanted to take a picture, and he ran over to the line without hesitation.  After I handed my phone to the family behind us and stood next to Shamu, Luke was struggling to break free of my grip, tripped over his own two feet, fell over, and started crawling away from the photo op. Dude - the picture was your idea. Everyone in line had a good laugh, I just stood there staring at him, and some very nice employee coaxed him to my other side for the picture. Noted:  no tooth fair or person in whale costume for Luke.

Sunday: Aubrey pulled herself up to stand at the coffee table. Nothing at this house is safe. This development might be the scariest event of the week. She was eyeing the stairs, but I think we're safe from that for another few weeks....I don't think our hearts can take much more this week.




Friday, February 24, 2017

Strange Perspectives

(This is Patrick, kind of important for this post...)

I like to play video games.

Melissa has her puzzles and books, but for whatever reason...I've always been drawn to the immersive world that a video game can bring.  Their stories fascinate me.

The games I grew up with (Pacman, Frogger, Super Mario, etc) didn't have much of a story, or really much to think about except for the action.  But, times have changed.

And so have the stories.

Take for instance a game that's several years old.  "Wolfenstein: A New Order".  It's a reboot of one of the oldest 3D games, Wolfenstein.  Again, the first one didn't have much of a story.  You had to escape a castle filled with Nazi's.  The end.

This new one is a little bit more in-depth.  It takes place in the 1960's after Nazi Germany won WWII and now controls the entire world.  You have to kill a bunch of them...blah, blah, blah.

Not important.  Fun, but not important.

In the game, you have a base of operations where you and a band of resistance fighters live.  One of the people in the base is a very large and strong man named Max.  Max is missing part of his skull.  At the point of the game where I am, you don't know why, but he looks like he was a Nazi super soldier.  (Yes, I am getting to a point here...)

You find out that Max was found, in his current state, behind a dumpster...cowering in fear.  You also know that Max acts like a child.  Not childish or obnoxious, he is mentally like a child.  His room is covered with drawings that you would see in a preschool.  He has a mobile above his bed and there are toys littered around his room.  He is a child.  You don't know why he is this way, or what happened to his skull, but you are lead to believe they are very much related.

So one day I was playing a mission and I was walking back to the base when I noticed something in front of my character.  It was a small toy robot.  Like you would see from the 1950's.  I was able to pick it up and it unlocked a mission for me.

I had to find Max's toys that he lost.

So I did.

I went around the base and found the toys.  I went back to Max's room to give them back.  The game had me lay them on his dresser.  I finished the mission and...that was it.  Now typically when you finish a mission something happens.  You get some sort of a reward for doing whatever it was that you were supposed to do.

But nothing happened.

I didn't get additional health, or armor, or a new weapon, or anything.  Max had his toys back and that was it.  Then something hit me.

Max has a mental and physical injury.  He doesn't speak and hates violence.  My character made a loud noise and he freaked out.  I then imagined how hard it was to create such a character.  Someone at MachineGames (the developer) had probably wanted to give him a line or two to speak, but to do so would probably make him sound awful.

But they didn't want that.  They wanted Max to be good.  They didn't want Max to be a joke.  They wanted him to be a part of the story that was the opposite of what you are doing in the rest of the game world.  They gave him respect.

That stuck with me the last few days.

MachineGames wanted to make Max real.  I see a lot of Luke in him.  And their treatment of such a delicate character is fascinating.  Especially in such a violent game.

It's amazing what you can find in a story.

Tuesday, February 14, 2017

On This Day

One of my favorite things to do each day is to look at my "On This Day" on Facebook. It probably has something to do with the fact that I typically can't remember what I did yesterday - let alone what happened in previous years. On a day like today - Valentine's Day - it is especially enlightening.

2016:  I was fat and pregnant with Aubrey at Luke's school program. For the life of me, I can't remember where Patrick was for work, but he wasn't in town.

2015:  Doreen St. reunion at John & Julia's wedding. Patrick was deployed.

2014: Must have been a quiet evening at home because there is no FB memory.

2013: We were days away from leaving Patrick in Hawaii. After an incredible four months of top-notch medical care at Tripler, we made the decision to hospitalize her for extensive genetic/metabolic testing and an MRI to make sure nothing had been previously missed.

2012: I was fat and pregnant with Claire. Patrick got my flat tire fixed so I didn't have to take care of it.  There are some parts of adulthood that I despise, and taking the car to the shop is one of those.

2011: We were praying to get out of the hospital because Luke was hospitalized with pneumonia.

2010: I was fat and pregnant with Luke, and we were days away from an epic Kansas reunion to celebrate at my shower. I was blissfully unaware of the crazy life adventure that was about to begin.

Typically, I consider my life to be very boring. However, when the events of previous years are there in print to review in one little snapshot, it is apparent that boring might be the wrong adjective to use. Although flowers, dinner out, and other thoughtful surprises are incredibly nice, life just seems to have other plans for us on February 14th each year.

For us, Valentine's Day is about the unconditional support we have offered each other when kids are sick or the military separates us. It has been agreeing to be on hospital/appointment duty when the other spouse is about lose it (typically that is Patrick stepping in for me). It is about finding time somewhere in a 12+ hour workday to visit for 10 minutes because you know the other person just needs to hear your voice. It is about covering extra household responsibilities so the other person can take care of whatever else it is that needs attention.

On February 14, 2018, I'll open up Facebook to check my "On This Day", and this is what it will say:

2017: No, I am NOT pregnant! Thankfully, no one is in the hospital. Unfortunately, the military has us 8161 miles and nine time zones apart, but we did get in that 10 minute call.

It was nothing overly romantic.

Nothing especially earth-shattering was said.

It was exactly what we needed.