The Rest of the Story

Think of everything you heard or read today. We are incessantly bombarded with information – 99.9% that is meaningless because it has no actual bearing on our lives. Then, there is the .1% that forever changes things. 

In early October of 2012 when Claire was admitted to LSUS for initial medical testing, I was handed a note scrawled in black pen that Claire’s brain had atrophied. The case manager had no explanation other than a brief sorry that she had no details and the doctors were at lunch. As I sobbed and stumbled through the hospital looking for someone who could help me, I managed to find Claire’s geneticist. When I asked her what the news meant, she replied, “Some kids with atrophy do ok, and others do not.” Then, she turned through a doorway without a second look back. 

It was after that experience that Patrick and I swore we would never settle for sub-par medical care. Claire has now been to nine hospitals, so we know a good doctor when we find one – Praise God – the stars have aligned, and we have found the right specialist at the right time.

No, you haven’t missed an announcement – we still have no answer as to what Claire’s underlying genetic condition actually is. Patrick, myself, Luke, and Claire have all undergone every genetic test possible, and there is no answer. Our goal is to treat symptoms as they present themselves – we do annual MRIs to monitor her microcephaly (small brain size), she is in PT/OT and wears leg braces to help with the hypotonia (low tone), she is monitored frequently by opthamology to track her optic nerve hypoplasia (small optic nerve), GI/nutrition are on speed-dial to address her weight loss/GI issues, and now we’re in the VIP club where we get the orthopedic surgeon’s personal cell phone number.

We have always known that her back wasn’t growing correctly; however, we didn’t quite know the severity. After a few experiences with orthopedic surgeons brushing us off, we insisted for a second opinion off base. Claire was finally seen on Friday, and it was a day where the .1% of information changed things.

Claire’s scoliosis has worsened to the point that her spine is curved 48 degrees. Due to her underlying condition, the doctor believes that she is going to need a spinal fusion surgery around the age of 10 to permanently correct the issue. For now until she is old enough for surgery, Claire will be in a cast or a brace that covers her from the shoulders to her hips to prevent the curve from worsening (I wasn’t a math major in college, but if I count my fingers correctly, that is not just around the corner). As the doctor says, “We are just treading water while we try to buy time (until the spinal fusion). If the casting is ineffective, then she will have metal rods (growth plates) inserted in her spine. The bad news about that is that those have to be redone every 6-12 months as the child grows until the final spinal fusion surgery. The double bad news is that the doctor says casting typically isn’t as effective on children with an underlying genetic condition. Clearly, this doctor hasn’t known Claire Godinez for very long! She is a stubborn little pain in the rear who doesn’t really care what scientific research says.

I think it is safe to say that this isn’t our first rodeo with getting shocking medical news; however, getting Claire to the best doctor possible made Friday as opposite as possible from our experiences at LSUS. When Dr. Faust walked into our room, he looked me in the eyes, shook my hand, and said, “I know it is 5:30 and your appointment was at 2:30, but I have had one complicated case after another, and your daughter is no exception. I’m not leaving this room until I answer each and every one of your questions.” Hello new BFF. After a very tear-filled appointment, he called me at 8:00 PM that evening to check in on me since he knew I was by myself and that was a lot of information to absorb. We’re never leaving San Antonio.

So, today Claire got her first cast. It’s a two hour procedure that has to be done while she is sedated since so much “adjusting” is required. Everyone’s prayers have paid off – she stayed happy as could be the entire day (once the anesthesia wore off – she hates that feeling) and the doctor has her spine positioned so that the curve is less than 20 degrees. When we were discharged, the nurses didn’t say “See you later”, but rather it was “See you for the next cast!” This was the first of who knows how many, but at least we have our new BFF leading the way.

Donated to Science, Fire Alarm, and Double Digits

What better way to spend the weekend than getting donated to science?!?! A few months ago, Claire's physical therapist, Ginny, told me about a continuing education course on gait training that she was taking here in San Antonio. She casually mentioned that they are always looking for demo clients and asked if I'd like to donate Claire.....um, yes!!!! When the instructor called to learn more about Claire, I joked that I also had a four-year-old with Down Syndrome if she was looking for another demo. I don't know who was happier - the instructor for finding two kids from one family, or me knowing that we'd have something to fill an entire weekend!

So, off Claire and Luke went Friday afternoon to donate themselves to science. When I first heard about the course, I didn't realize it was a national course. Therapists from all over - LA, Atlanta, Dallas, NYC, Duluth, and Denver - were gathered in San Antonio to learn how to improve muscle function to facilitate independent movement in kiddos of all developmental stages. While Claire worked on planting her entire foot on the ground to go from sit to stand, Luke built abdominal and calf strength to improve his gait, walk down stairs with more stability, and actually get some vertical distance off the ground when jumping.

I'm not quite sure if it was more inspiring to watch so many talented therapists in one room, or to see so many children with diverse needs work towards independence. From little babies just learning to crawl to high school students working to leave their wheelchairs behind, all kids in that room had one thing in common - their lives are intertwined with the care and support of therapists who don't care how long it takes to reach the next goal. They have the patience of saints through the frustration of  working with body parts that don't quite cooperate, and they also wipe away their own tears of joy during the moments of victory.

The best thing about the weekend wasn't all of the extra awesome therapy - it was the sleep that followed!!!! Both Luke and Claire were EXHAUSTED.....and I was the happiest mom on the face of the planet. Not only did I get to watch an entire movie without interruption, but I took a bath, surfed the internet, and sat in blissful silence. That is, until the stupid smoke detector decided its battery wanted to die. Most of you are probably thinking of that annoying soft chirp that many make when the battery is low. Nope, not mine. "Warning: Battery is low."......"Warning: Battery is low." Really??? I have never been so happy to find a 9 volt battery in the junk drawer in my entire life. I hauled the step stool upstairs, and thought, "How hard can this be?" as I looked up at the annoying little machine.

There was a little button in the middle that I thought said, "Press Here to Open".

"FIRE!!! FIRE!!! FIRE!!! EVACUATE!!! FIRE!!"

I frantically pressed the button as quickly as I could.

"WARNING. CARBON MONOXIDE HAS BEEN DETECTED. EVACUATE."

Ahhhhhh!!!!!!!! Press press press

"FIRE!!! FIRE!!! WARNING. CARBON MONOX - "

Guess what - the button didn't say "Press Here to Open". Upon further examination, it really said, "Press Here to TEST". Oops. My next thought when straight to a time when our security alarm went off and the police stopped by to make sure everything was ok. The last thing I wanted was for the stupid fire truck to come blasting through the neighborhood. So, it was time for the first middle of the night phone-a-friend!

Me: "You better not have your &#^@ phone on silent!! Hi!!!"

Patrick: "Why are you calling in the middle of the night?"


Me: "So, if you accidentally set off the fire alarm in the middle of the night, does anyone come to check to make sure there really isn't a fire?"

Patrick: "Nope. They sure don't. Go to bed."

Me: "I'm scared."

Patrick: "But there wasn't really a fire."

Me: "I know. But now I'm awake. Want to talk?

Patrick: "Go to sleep"

Me: "Hey! The good news is that we're down to double digits left on this deployment!!!"

Patrick: "Good night."

Home & Garden & Pee Show

For your reading entertainment....

So, there we were, driving to the San Antonio Home and Garden Show on Sunday. I had finally decided to be a responsible parent and take Claire out in her wheelchair rather than just carrying her around. Plus, I knew parking would be a disaster and we could use our handicap parking pass (no shame!) Well, I failed to consider the abundance of geriatric attendees at the Home & Garden show who would be hogging the premier parking spots. Luckily, there was a guy driving around in a golf cart moving cones out of the way to free up spots, so we were two minutes from our goal parking spot.

While we listened to "Shake It Off" for the 1000000000th time, Luke frantically started signing that he had to potty.

Me: "Dude. You gotta hold it."

Luke: Frantically signing potty over and over.

Me: "Luke, you HAVE. TO. WAIT. This guy is moving the cone, and then we can go inside."

Luke: Tears flowing as he tears at the straps on his carseat. "Potty....potty....help....HELP"

Too late. As I looked back at him in the rearview mirror, I could his jeans turn from light to dark blue.

Me: (In a not soft voice): "LUKE!!! STOP PEEING!!!!! JUST STOP!!!!!

At that moment, the cone guy signaled us ahead and I gunned it into the spot and flew out of the car. In two seconds flat, I whipped Luke out of the car to stop the flood into the nooks and crannies of the carseat. In three more seconds, Luke was tearing his pants down his legs.

Luke: "POTTY, MOMMA!!!"

WTF.

Me: "FINE!!! Here just pee on the tire." I turned him toward the target and stood as close as I could to block his naked butt from the line of cars streaming in directly behind us, thinking we'd only be there for another second or two.

But the pee just kept on coming.....and coming.....and coming.......and then the security guard starting coming.

Shit.

Me: "Luke, pull up your *%#%!@ pants NOW!!!"

Luke: "Pee, Momma!!!!"

I grabbed him, naked butt and all, and pulled him around the side of the car as fast as I could as the security guard drove up to us. He wasn't done. There was pee in his shoes, all over my boots, and up the front of his shirt. And we were 30 minutes from our house.

Security Guard: "Ma'am - Is everything ok?"

Frazzled Mom: "Oh, just a little boy problem, but we're good. We are just getting the wheelchair unloaded so we can get sister inside to the show." ("You're a dude. Don't tell me you have never gone pee on a tire!!!" is what I really should have said!

I looked over at Luke and there was no denying the clear markings that he had peed his pants, but we had made it so far to get to this stupid Home & Garden Show. Plus, we were downtown, it was drizzling/foggy, and traffic was horrible, so I wasn't about to venture out to go buy some new pants. Surely the bathroom would have towels and a dryer, right?

So, we loaded Claire into the wheelchair, trotted off to the nearest bathroom, and went to work salvaging the pants. In case you were wondering, the San Antonio Alamodome doesn't install dryers in the bathrooms, nor do they splurge for high grade papertowels. Your fingers might go through the flimsy towels a time or two, but in the end, they did the job. As they say, "The Show must go on!" and so it did for us at the "Home & Garden & Pee Show".

Deployment Shenanigans

Rewind back to Thursday, December 4^th  (3 Days pre-marathon and the end of 2014 blissful peace and quiet):  On my way home from one of Claire’s appointments, I called Patrick to tell him we were going out to dinner to celebrate a new project I had at work. His response, “Oh good! Now you have something to keep you busy while I’m deployed!”

-          Crickets    - 

I knew 2014 was too good to be true!! But, once again the AF gods took pity on our poor little souls and kept Patrick state-side in South Carolina. “That’s a deployment?!?” You may be asking yourself. Me too. God bless the Air Force. Regardless, at the end of the day it means I’m flying solo until June.

Let me preface this by saying that, “Yes, Patrick – you are correct – this really isn’t that bad.” This will be like any other less-than-stellar life experience – God helps you forget! Looking back on Patrick’s last deployment, I remember next to nothing. Perhaps this was because Claire was 5 months old and in the beginning stages of “I think I’ll hang out at the hospital” phase, Luke was 2 (enough said), and I had just started a new job. 2015 is a walk in the proverbial deployment park!!

In case you were wondering how we would choose to fill our time, staying busy highlights include:

-                       Poop-a-palooza 2015:  What better way to get ready for a deployment than to have Claire go through the never ending cycle of “Should I or should I not effectively go #2 on a regular basis?” Code for: Until the doctors could get Claire’s meds balanced correctly, her intestines became a bipolar monster of ceasing to work (ER visit) to spouting such a spectacular fireworks show that one monumental experience left remnants in both her hair and between her toes. No lie. The good news is that 2^nd opinion doctor was much more effective at taming the ugly monster than our original doctor, and now Claire’s intestines no longer keep us awake for hours at a time each night and the fireworks shows have been cancelled for the foreseeable future. Darn.

-                      Therapist-school-paperwork-will-it-ever-end-marathon:  Running a physical marathon is a walk in the park compared to the ridiculous mound of paperwork a child produces when he/she turns three years old and “ages out” of the state-sponsored early intervention services and transitions to the local elementary school. This week, we have 14 appointments, and that is a welcome breather after the world-record 17 appointments from three weeks ago. Yes, co-workers, that is why you receive e-mails from me at the strangest times of day. It may seem odd to work at 4:45 a.m., but at least I can guarantee my work won’t get interrupted by a child, e-mail, or phone call!

-                        Wedding shenanigans:  If I could make it to Hawaii by myself with two baby midgets, surely I could make it to Kansas City with two toddler midgets, right? Fortunately, the gamble paid off, they were as good as gold, and we partied our buns off at one of the most beautiful, fun, and energetic weddings I have been to in a long time. The “baby brother” of one of the old neighborhood families was getting hitched, and the old gang from Doreen street reunited for the first time in a decade. It’s weird when your own kids are now older than the neighbor kids were when I started babysitting them. I feel old.

-                    The usual:  When we’re not out seeing the world (Kansas), then you can usually find us at our usual locations – The zoo, Sea World, or Target.  If you are ever unable to track us down, just ask Luke’s best friend at the Sea World gate, the train conductor at the zoo train (his cousin has DS), or the nice sample lady at Target where we are, and I’m positive that one of them can assist. The days just seem too long at home, so we rotate between our favorite locales, depending on the weather. If we REALLY want to spice up our lives, we might throw in shopping at La Cantera or going to the movie theater. PARTY. ANIMALS.

-                      Too fun to handle:  I know what you’re thinking – they have more fun than they can handle. Well, I forgot to mention the dishes (by hand due to broken dishwasher), laundry (it reproduces like bunnies while I sleep), cleaning (dogs and toddlers, oh my!), oh yeah, and I almost forgot to mention that full-time job that keeps me on my toes, yet offers a very strange sense of stability in my day.

-          You’re probably thinking that I need a hobby (or some tequila), and you’re probably right. 

Why I run

Why I Run

After an incredibly long day of three therapy appointments, figuring out a referral with Tricare, and work sandwiched between, I whined on the phone to my brother that I just wanted a day of “normal”, a day with nothing medically related and a regular 8-5 job.  He asked, “Have you ever considered that this IS your normal?” Pretty smart – maybe he was right.

There are some moments in life that shift our “normal” so far off from where we envisioned that it is seemingly impossible to comprehend that “normal” is still within personal reach. My first encounter with these moments came at 12:45 on April 16, 2010 with the doctor stating, “Your son has Down Syndrome”. Although this sentence altered life as I had previously known it, the moment was merely a line drive to shortstop. It was the news of Claire’s suspected genetic disorder that sent the ball so far into left field that it left the stadium.

Over the years I have watched my friends and family deal with their own monumental moments. From the deaths of children, spouses, and parents to divorce to fertility issues to other crazy life incidents, I have seen others react with anger, denial, withdrawal, and humor. There is no one right way to handle the repercussions of these pivotal moments. When the responsibility or grief or whatever emotion follows becomes so painful to endure, it is simply about survival. This is why I run.

Nine years ago I signed up for my first half marathon because it sounded like a good challenge, and I was crazy enough to try it. Plus, think of all the beer I could drink with all of those calories I was burning!! Fast-forward to this past July, and my rationale was not quite the same.  Running a full marathon always piqued my interest, but I always had a justification for not doing it. “I’m too busy”…..”Luke is just too little to be away so much”….”Only crazy people run 26.2 miles” – All seemed 100% valid, at least until I had Claire.

In 2014, the kids have had over 400 hours of physical, occupation, and vision therapy in addition to visits to nine specialty clinics. Through these appointments, Luke constantly remains the happiest and most content human being that I have ever encountered. His attitude is something that I can only dream of attaining. To watch Claire struggle to learn every single nuance of daily functioning has taught me the true meaning of endurance.

I watch my friends with their kids, and I marvel at how naturally they progress from one skill to another. If I did not have Claire, this is something I would have never noticed nor appreciated in the chaotic hustle and bustle of the daily lives we lead. The jealousy I used to feel for the ease in which milestones were reached has been replaced by a true sense of awe over how the human body is capable of developing. I looked at myself and realized the God-given gifts of health, motivation, an insanely supportive husband, an incredibly flexible job, and inspiring kids that I was allowing to waste away. So, on that fateful day in July, I joined the San Antonio Marathon Training team and haven’t looked back.

Each week when I run, I am the crazy loon wiping tears from my eyes as 100 of us take off running on the dark trails throughout the city. As the sun rises and we push forward, stories are shared of why we are here. From Cancer survivors to weight loss champions to empty-nesters looking for a hobby, each of us has a reason to challenge our bodies to endure the 26.2 mile race.

For me, it is watching Claire’s struggle. While other kids run around, get into trouble, and play with their friends, she sits at the sideline in her wheelchair, unable to move independently. Since she is legally blind, we do not even know the extent to which she sees the world around her. She has never sat up in her crib, held a bottle, fed herself, or taken a step. Each time she needs to be moved because she is uncomfortable, feels thirsty, or wants another bite of food, she relies 100% on the help of others.

I have the freedom to move as I please, to go where I want, and to do whatever I feel like. So, I run. Training has been an emotional release to savor the stability of our lives in San Antonio, to quietly say prayers of thanks for the support Luke and Claire have, and to celebrate the milestones of this past year. From gaining a pound to signing “more” for the first time, Claire has defied the grim predictions of the doctors in Shreveport two years ago. She will continue to defy these odds, and I will continue to run.  When I cross that finish line on Sunday, we’re going to help her stand to celebrate.

So, here’s to running my first marathon and Claire standing, two things that I once thought were impossible.