The Birthday Party

After Claire was born and doctors suspected something was wrong, our minds were instantly consumed with what life would be like for her from a medical standpoint. As doctors struggle to put a name to her diagnosis, we constantly repeat the same history...the same statistics....the same list of meds...the same list of missed milestones. Somewhere in the midst of those clinical hours, you build up an emotional wall from keeping those same grim lists from hurting so much each time you think about them. Patrick said it perfectly one time - "Sometimes, I feel like we are her caregivers and not her parents."

Behind that emotional wall is the acceptance that your child won't have the same social experience that you grew up with. Looking back on our childhoods, many of our memories involve our friends. What would the memories look like for a child who can't even speak or walk? This weekend proved that those disabilities do not have to dictate a different childhood.

Claire was invited to a classmate's birthday party.

I will be honest - I cried when I opened the invitation. Then, I cried some more as I e-mailed the mom to explain that Claire in in a wheelchair, but I wanted her to participate in the party at the jumpy place (in case she didn't know Claire). Would it be ok if I stayed? It is hard to find a babysitter on a Saturday morning, so also needed to bring my other two kiddos. She probably thought I was nuts. I cried some more when she instantly wrote back asking what she could do to help Claire feel more included.

Walking into the party, I was a wreck. As much as I wanted Claire to participate, I did not want to face the awkward moments of trying to explain why she couldn't jump or say "Happy Birthday" or eat with everyone.

There were no awkward moments.

Every single child who was there from her class ran up to say hello. Some kids asked Luke to go play, and the grandparents instantly offered to take Aubrey so I could help Claire jump. After I clumsily pulled Claire through the little-kid-sized opening into the jumpy castle, we were surrounded by her classmates. "Hey! Look! Claire gets to jump!!" one little girl said, and "Oh, your Claire's mom - we play with her at school!" said another little boy.

For those few hours, I wasn't Claire's caregiver. I was the parent of a little girl at a birthday party having fun with her friends.

Best. Feeling. Ever.

Hug, please!

While growing up, most of us were told not to talk to strangers.  Parents hurriedly shush their children when they curiously try to strike up a conversation with adults and mutter a quick apology. We walk in and out of restaurants and stores while barely making eye contact with those around us.

The truth is - there are a lot of lonely people in this world. Whether it be someone who has suffered the death of a spouse, someone who has just gone through a divorce, a grandparent living far away from grandkids, or a family split apart during deployment, so many of those around us are lonely. And yet, we carry on about our daily business emotionally isolated from others nearby.

Until you go out with Luke.

As we walked into Starbucks this morning, he instantly waved to two ladies visiting at the table by the door.

"Hi! I'm Luke. Getting moo cow and a cake pop!" he said without missing a beat.

As the ladies laughed and waved hello, he scampered off to get in line.  While waiting with his box of chocolate milk, he grabbed my arm and said, "Look mom! A cowboy!!" Before I could respond, he wiggled past the others in line to tap the hand of the cowboy who was four people ahead of us.

"I like your hat!!" he yelled enthusiastically. "I'm Luke. Hug, please!"

After looking to me for approval, the cowboy bent down and gave Luke a hug. "Hi Luke! It's nice to meet you. I'm cowboy Justin. Your hug sure made my morning."

Although I probably won't go around asking to hug everyone that I see, smiling and chatting with those around can quickly make the day better. Maybe it was the friendly gesture by the cowboy, maybe it was the coffee in my hand, but the chaos of the day didn't seem so bad as we left....after we said good-bye to everyone else in the store, of course.

8 months

I distinctly recall getting ready for Christmas last year while being pregnant thinking, "Next year at this time we'll have a little baby crawling around." Time always seems to go fast, but having Aubrey this past year has seemed to speed up time even more. Both Luke and Claire have always made us laugh with their unique little quirks, but Aubrey has taken that to a whole new level. In other news, we are in DEEP trouble when she is a teenager. 

Top 5 Things To Remember About This Age

1. Sassy Pants - Some kids are quiet....others are shy - Aubrey is neither of those things. Clearly the third child, she knows she has to fight for attention. She has no problem doing that.

2. Sleep - Don't be messing with this kid's sleep. She wants her fish aquarium on, her star blanket smashed into her hand/against her face, paci in her mouth. As soon as she is happy, she sticks her feet straight into the air and flops onto her side not to be heard from for the next 3-10 hours (depending if it is naptime or bedtime).

3. Food - If you want to keep all 10 of your fingers, do not get in the way of Aubrey's puff supply. She is serious about those things.

4.  Path of Terror - Despite her little T-Rex arms and round belly, she has mastered crawling. Suddenly, nothing is safe. Claire and Luke have got to toughen up because Aubrey's favorite target is typically whatever they are playing with. If they are at school, then she occupies her time by pulling cords, finding electrical outlets, or trying to catch the dogs. No one is safe.

5. Laid Back - When Luke was a baby, I never thought another Godinez baby would ever come close to how laid back he was. Wrong! She may be a little spitfire with her preferences, but Aubrey loves a good adventure. She has been on five trips, loves to ride in the car, and is content to ride around in the shopping cart/stroller for an afternoon. That is much appreciated because Claire's tolerance for any of those activities is exactly zero. 

Bottom line:  We're in for a wild ride with this one.  When she is a teenager, I'll bookmark this post to remind us how excited we used to be about her sassiness.

Perceptions

When Patrick and I are in the car together, I am in constant fear of impending death because I am convinced he is going to slam into the car in front of me. He always calmly and lovingly explains that we are nowhere near slamming into the car in front of me. Clearly, I need to again visit the eye doctor to check my depth perception. So, I often wonder - are we really not all seeing things the same way, or is it just me?

Not only does the debate over my eyesight leave me with questions, it is also my perception of reality that leaves me questioning if life is as "boring" as I often tell my friends and family when they call to check in.

Last week, I was over in Shreveport for a quick work trip with Squish, my Executive Assistant. I came back home to a fun weekend of date night, Christmas decorating, a Christmas party, running my half marathon, and after my celebratory nachos in the bathtub (because I'm classy like that), Patrick boarded a plane for a week in Vegas.

The kiddos had their 12 therapy appointments, and worked chugged along as usual. It's Thursday, and I'm at over 300 e-mails for the week - steady and standard. But somewhere in there, we're throwing in getting our Bossier house rented (yay), fighting with insurance on some of Claire's coverage (boo), two Christmas parties, and a Billy Joel concert. I don't feel like this is crazy or the least bit hectic because to us, it's just a normal week. There is plenty of time for chatting on the phone, watching Hallmark Christmas movies, and snuggling with the midgets. Any parent and/or working adult can relate to the usual daily grind.

Tonight, Claire's nurse cancelled her shift because she is sick, and the respite care office was trying to find a last-minute sub. The new placement nurse called to find out more about Claire, and I explained that she was pretty low acuity - no g-tube or trach, but non-verbal, limited use of limbs, in a wheelchair, uses diapers, in a cast for scoliosis, etc. She stopped me mid-sentence, and said, "That is NOT low acuity. You have just convinced yourself because she isn't hooked up to machines! She still needs a care-giver for all of her needs."

Oh.

So, maybe I my perceptions are a bit off. Maybe "boring" isn't the right word for us, or "low acuity" isn't the right way to describe Claire. All I know is whatever the heck we want to define this as, it is pretty dang fun....even if I have no depth perception.

One Shoe

"So, I have good news, and I have bad news," Patrick said over speakerphone as I drove the kids home from therapy one afternoon.

"The good news is that I made it to the gym, but the bad news is that I only had one shoe in my bag."

After I stopped laughing, I unsympathetically told him to figure out plan B. After all, we have had LOTS of practice this week switching plans.

Most of you know that Claire's scoliosis has been worsening over time (which we expected). The curve is now at 57 degrees, and bracing isn't quite doing as much as we need to slow the progression, so casting is our next option.  We casted her once before, and the results were great - hardly any issue. Lesson 101 of medical stuff:  just because something worked once without complication, don't expect the same thing a second time.

The casting went great last Friday, and the doctor was thrilled with the curve correction he was able to get. However, it was the aftermath that we didn't expect. From the time she woke up until Sunday, she cried and cried. We realized that the cast had cut into her hip, so I texted the doctor for an early Monday appointment to fix.

Side note:  Holding your hysterical four-year-old down on a table with three other adults while a cast is peeled off your kid's skin is not fun.

After lots of tears from both of us, we had high hopes that the spot on her hip was the source of her tears and lack of sleep. We were wrong.

Monday was the highlight of our week because we slept for four consecutive hours. That was the best sleep of the week. Finally, on Thursday morning, I texted the doctor at 7:00 am to tell him we had a big problem on our hands. It wasn't just her hip, and it wasn't just "adjusting to the cast" at this point. He immediately called me, and we were at the hospital by 8:15 to cut her out of the cast.  You know how a block of Parmesan cheese gets all rough after it has been grated? That's a good visual.  It turns out that the lining on this cast was just tearing up her skin. The doctor did absolutely nothing wrong - it was simply that the lining on this cast wasn't good for her sensitive skin. The cast was so tight that you couldn't see what was happening, and she couldn't tell us. We'll let her heal for about a week, and then it is back to the hospital for a new cast....this one with a different lining.

The parallel story going on here is that some of you know Claire was in the ER on Columbus Day because we couldn't get her to stop throwing up for a week.  She lost two pounds, and after several doctor visits, we were convinced it wasn't "just a virus".  Rebalancing her meds finally did the trick, and her belly is back under control.

So, whether it is a missing shoe in a gym bag, a new plan for her back, or new meds for her belly, sometimes you just gotta go to plan B. 

Claire slept 14 hours yesterday, and Patrick made it to the gym with both shoes.

Dance Party Perspective

How often do we think we just don't have our shit together?

We walk into a Monday with a list of 10 to-do items, and instead of knocking them out one at a time, the list suddenly expands to 30 before lunch? Or, we walk into the house after a long day without a single plan for dinner, clutter on the counters, and three screaming banshees wanting dinner? I used to think that was just "Mondays at the Godinez house", but as I visit with my friends and co-workers, I realize that it isn't just me.

This adulthood business is hard. Frankly, sometimes it sucks. Whether it is not being able to figure out our kids, trying to solve complicated work projects that consume our existence, or household responsibilities that overshadow all else, it can be a daunting task to simply seek balance.

Delusional Melissa used to think the answers came with age, more work experience, or more time as a parent, but that is a lie. Just when I get cocky and think I have things figured out, some new, more perplexing issue presents itself. But, at work, that is simply what we are paid to solve, and as parents, that is our inherent task - to navigate the tricky road of raising our kids.

At the end of this Monday, like many others, I have no grand plan or everything accomplished that was on my to-do list this morning. We walked in the door after a busy day of work, school, and therapy appointments, and everyone was about to go into full throttle meltdown mode. So, we turned on some music, Luke yelled, "Let's jam!" and busted some kick ass moves while Claire and Aubrey "danced" in their seats. During that hour, the meltowns faded, the to-do list didn't matter, and we laughed.

We do have our shit together - it just takes a little dance party to realize it sometimes.

An earthquake, a baptism, and a wedding

This morning, Luke trotted downstairs at 6:45 wearing shoes with his pajamas.  "Hi mom! Shoes on. Blue car now?" he asked, pointing at the garage. A true Godinez child - always expecting an adventure.  Although we're disappointing him this weekend with a quiet weekend at home, we're all still in recovery mode after our epic adventures last weekend with an earthquake, a baptism, and a wedding.

We knew the weekend would be nutty, but thankfully, the kiddos were as good as gold (minus a few meltdowns in the car - by them, not me). Luke does tend to go a little crazy from all of the attention, so Saturday morning around 7:00 am, when suddenly everything in the room started making noise, we assumed it was Luke upstairs trying to do something to get attention. Then, we realized that the wall and bed were moving, and Patrick finally put it all together - "We're having an earthquake." Can we not have just one boring trip to Kansas?

Soon, it was time for round one of family festivities: Aubrey's baptism. As we were starting, the priest looked around the room and said, "This is a lot of people." Oh, it isn't normal to bring 40 people to a baby's baptism? Weird. Back when Luke was born an spent some time in NICU, we decided to have a large fiesta for family and friends to meet the little dude.  Because grandparents are far more fair than parents, it was only natural that Claire and now Aubrey would be welcomed to the craziness of our family with a Mexican fiesta with all of our family and friends.

Aubrey and her godparents - Mike and Blake

                                             

 After brunch with the Malone clan, it was was time to celebrate Jeff and Tricia's wedding.  The wedding was beautiful, the food was delicious, and the DJ was excellent. Luke, Claire, and Aubrey never left the dance floor.  They boogied with friends and family the entire night, while I prayed they would be so exhausted that they wouldn't notice the three hour drive later that night to OKC.  To end the festivities, Tricia and Jeff bought lanterns for everyone to light and release. Obviously, they underestimated the abilities of their friends and family - after almost lighting the grass, a few trees, and each other on fire - the lanterns finally launched, and it was our cue to head south.

Although the distance between San Antonio and Wichita is less than ideal, nothing beats these trips home.  Truly, nothing is better than being with friends and family and seeing Luke, Claire, and Aubrey form the relationships with grandparents, aunts, uncles, and cousins that Patrick and I were so lucky to grow up with.

In the words of Luke, "Shoes on. Blue car now?" We are always ready for an adventure, so, until the next one.....

Congrats Tricia and Jeff, and thank you to everyone who made time to celebrate Aubrey's baptism.