The Brochure

October is Down Syndrome Awareness Month. Ironically, today I was cleaning out Luke's closet, and I came across his hospital discharge packet from when he was born. In it were records from his 21 days in NICU, several copies of eye tests and hearing tests he had failed with follow-up appointment schedules, and a brochure on how to care for a baby with special needs.

The brochure focuses on the feelings of loss or anxiety over having a child with special needs rather than the typical child you envisioned. It claims you may need to "change your expectations". It mentions that you may have "a few more appointments" than a typical child may have.

There is no pamphlet that is going to prepare you for the emotional roller coaster of those first few months. And a few more appointments? Aubrey is now 18 months old, and she has had a total of 5 or 6 appointments. By the time Luke was that age, he had over 30 days hospitalized, endured three surgeries, and had over 150 appointments.

What those brochure failed to mention was the wholesome kindness that you would have the privilege of witnessing every single day. When we were in Chicago last weekend, Luke proudly waved hello to everyone he saw. It did not matter if it was a business person striding out of some fancy building, a mom pushing a stroller, or a homeless man sitting against a building. This afternoon he spent an hour running through the house in his Halloween Ghostbusters costume getting ghosts so Claire and I wouldn't be scared. Then, when I asked him to help with Claire so I could clean up the kitchen, he didn't hesitate to help her with her walker.

The one thing that the brochure was right about was to "change your expectations".  However, I disagree that this is only true for parents of a child with special needs. Parenthood is a wild ride, regardless of the situation, personality, or abilities/disabilities of the child. It does not matter if you have the most outgoing or socially awkward child, the athlete or the video game expert, the bookworm or the child who can never find his or her homework folder.

So, for Down Syndrome Awareness Month, to hell with the brochure.  Forget "changing expectations" and strive to "surpass expectations" in any situation or challenging moment.  Learn to view the world more through Luke's eyes - with a little more kindness, and a whole lot of enthusiasm.

The Surprise - Part II

Link from part I:  http://patrickmelissaandfamily.blogspot.com/2017/08/the-surprise-part-i.html
 

Monday, Just 31st 3:09 PM - we finally had an official homecoming date and time.

At any given time during deployment, I could rattle off the theoretical number of days, hours, and in some cases minutes or seconds until homecoming. It was theoretical because the Air Force simply does not like to pre-plan dates for neurotic wives such as myself. Then, to top off the anticipation, the entire group of guys got stranded in Kuwait for a few days during the journey home because the entire crew had food poisoning. Patience is not my greatest strength, nor is it Luke's. Every five seconds he asked, "Mom, let's go to airport!! Get daddy!!".

Just when I thought we might lose our minds from anticipation, it was time.

My dad always says that anticipation is the most fun part of a trip or an event, and in this case, that was partly true. My friend, Tammy, made the kids the most perfect shirts. Luke's said, "He's not just my daddy, he's my hero." The girls' shirts said, "He is my hero, and I am his princess".  Autumn, our nanny helped the kids make posters. Neighbors coordinated dinner so we wouldn't have to think about food during his first days home. Friends, our babysitters, neighbors, and members from the squadron gathered from around town for the Godinez airport party.

In true Godinez fashion, things took a turn for the crazy when we attracted the attention of a news crew. When we explained Claire's surprise, I was suddenly getting a mic strapped to my shirt by a news crew so they could catch the homecoming moment on camera.

"He's here! We see him!!," everyone started shouting. There he finally was at the top of the escalator, coming down to see us.

"Go Claire, GO!!!!", our babysitters and I coaxed.

And off she went. Luke beat her, of course, screaming, "DADDDDDYYYYYY!!!!" and leaping into Patrick's arms. But after we stopped Patrick in his tracks, she inched forward in her walker to see him.

No one was carrying her. No one was helping her balance. And it was captured by the news crew.

I love homecoming pictures and videos, even when I don't know the family. In fact, I have probably spent an embarrassing amount of time watching them and crying. There is no more beautiful moment than a family throwing their arms around a loved ones after months separated by deployment.

Claire's moment is no different. Her video has been viewed over 250,000 times, and it was on the news in 13 states (that we know of).

The anticipation was fun, but the moment was absolutely perfect.

Claire's News Story

The Surprise - Part I

During deployment, time is a strange thing. The hours drag on, but days fly by as one blends into another in a monotonous routine of survival.  189 days - 4536 hours - 272,160 minutes of filling an emptiness that deployment thrusts upon a family. We were going to figure out how to make time pass quickly, but I wasn’t quite sure yet of the details.

When I was driving Patrick to the airport, we were discussing all of the random things I would do with the kids while he was away.  I casually asked, “What would you do if Claire learned to walk while you are gone?”

“I’d shit my pants,” he replied seriously.

Challenge accepted.

As long as deployment seems, the time since we just put Claire into a walker February 3, 2015 seems like an eternity ago. Her therapist was convinced it was time to get her “vertical”, but she lacked the strength or coordination to propel the walker forward. However, as you pulled her arms, she moved first her right leg and then her left. Two small movements to give us a glimmer of hope that walking would someday be possible.

Fast forward over two years, and that day was still not here.  Despite countless therapy appointments and hours of practice at home, she simply stood there in her walker unless someone pulled her arms or pushed the walker from behind. At some point, hope begins to waver. At doctor appointments, I sometimes can’t decide if I want answers to the questions in my head, but we all know that my filter doesn’t always work well. During one appointment about a year ago with her orthopedic surgeon, I asked if he thought she would ever walk. He paused, thought carefully, and firmly replied, “I don’t know. But, I do know, that if she is going to, most patients walk by the time they are five or six. After that, the odds just don’t seem to be in their favor.” Clearly, he didn’t have a filter either, and I love him for his brutal honesty. The clock was ticking more loudly than ever after her fifth birthday in March.

The week before Memorial Day was especially frustrating. Luke had come down with a stomach bug, work was crazy in anticipation of the long weekend, and I was in a foul mood because I despise holiday weekends when Patrick is away. Per our usual evening routine to help time pass quickly, I was sitting on a little scooter in front of Claire, alternating between pulling her along a few feet and letting her stand there to see if she would move on her own. In one of my less stellar parenting moments, I angrily pleaded with her, “Will you please just move your feet.” I stared at her, willing her to move before I completely gave up for the night as was the case every other night.

The walker inched forward.

I lost my ever loving mind.

Sobbing, I begged her to take another step.

She started laughing hysterically, and then she inched the walker forward again.

Step after step she propelled the walker forward about three feet, the wheels of the walker smearing my tears across the floor. In that one moment her entire world shifted. 

And we weren’t going to tell a soul other than the nanny and her therapists. We had two months to practice for the best surprise ever.

To Be Continued…..

When Paths Cross

I always say that "things happen for a reason", and this typically drives Patrick nuts. However, after today, I think he's turning into a believer.

No one enjoys waiting for a medical appointment - let alone one of those "Big" appointments where some tough conversations need to happen. Claire has been losing weight for the past few months, and the doctors just don't understand. At our last nutrition appointment we were advised that we had "tried every nutritional option" and we needed to begin considering "alternative options". Translation: we were back to square one of considering a GI tube...and the doctor was 1.5 hours late for our appointment.

Let me just say - I love this doctor. He came out to tell me he was working some difficult cases, and he had not forgotten about us. He anticipated our appointment taking a bit longer as well.

Until we put Claire on the scale.

She gained 1.6 pounds since last month - more than she typically gains in an entire year.

We all stood there staring at the scale. "Am I in the right room???" joked the doctor.

Totally not how we thought the day would go. So, we went through our typical routine, and we sat there going over every detail since our last visit, and we decided that it was the combination of meds, coconut oil, emulsified oil, and dietary supplement that she gets at least 3-5 times each day. Her body has finally healed enough and we have just the right balance...for now.

But....the story gets better:

When we decided to move to a prescription for the emulsified oil, the doctor needed to consult with the nutritionist, so he went down the hall to her office and said, "Hey, I have a question about Claire Godinez." As they began talking, the pediatric metabolic geneticist poked her head around the door and asked, "Are you talking about Claire Godinez from Tripler?? (military hospital in Hawaii). Our doctor only knew that we had come from Louisiana, so he came back to the room and asked, "Hey...weird question, but were you ever in Hawaii?"

"Yeah. When Claire was 8 months old. We joined Patrick on his 'deployment' so Claire could get different medical care."

"Well, you're never going to believe this, but Janet is here."

In walked our Hawaiian miracle doctor. When Shreveport had written off Claire and made a grim prognosis, she was the first who gave us a glimmer of hope.  She was the doctor who insisted on additional testing, coordinated meetings with other doctors, and quickly ruled out the horrible, scary things that LSU doctors had diagnosed.

In the midst of my minor meltdown, I asked how she possibly recognized Claire's name from a simple passing comment.

"You're not really a family that someone forgets," she joked.

Nope. Not today. And luckily, it was for a good reason. You never know when your path may cross with someone from the past, and you never know when Claire might surprise us all.

Here is the full story from our visit in Hawaii:

http://patrickmelissaandfamily.blogspot.com/2013/01/a-christmas-story-little-late.html

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.

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.

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.