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.Wednesday, December 14, 2016
8 months
Thursday, December 8, 2016
Perceptions
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.
Friday, October 21, 2016
One Shoe
"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.
Monday, September 26, 2016
Dance Party Perspective
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.
Sunday, September 11, 2016
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 |
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.
Sunday, August 21, 2016
Hot Damn!
Nothing says romance quite like taking the circus to the grocery store on a Friday night. Don't worry though, we kept it classy by going to H-E-B - the best grocery store in Texas. This was no Wal-Mart Friday night. I even put on my good flip flops and a headband for the occasion.
That was actually last Friday night's festivities. This Friday, we decided to up the romance level. The week was what we shall call "rough", so loading up three midgets, dressing up for H-E-B, and venturing out into the public universe seemed a bit too daunting. So, we opted to keep the party at the casa....and went to bed at NINE O'CLOCK!! Hot damn.
It was glorious until both Claire and Aubrey decided to wake me up briefly around 3 am. Not a big deal because they went right back to sleep, but I was wide awake. Apparently, my body has adapted to minimal shut eye, so it was time to get up. I did have a movie to finish and some online shopping to get done, and the house was quiet. Except no sooner did I turn on my movie and the computer (far away from all sleeping creatures), when the littlest midget could sense that I was not snuggled up in my bed.
We might just venture back onto the social scene next Friday...you know....back to H-E-B.
Wednesday, August 17, 2016
Naked in the fridge
Case in point:
Late Friday afternoon, I was on a call for work after our nanny was already gone for the day. Luke was nicely playing on the iPad, Claire was playing with a toy, and Aubrey was asleep. Of course, as soon as I answered my phone, it was like I had turned on a giant magnet for 6-year-olds, and Luke was immediately at the door signaling that he had to potty (why do all my stories start like this?!?)
I waved him off, heard the toilet, and then the patter of his feet running back to the living room. Success! So, I continued my call until I started hearing, "Help!" and then some other muffled word. I gave it a few minutes, but of course it didn't stop because I was still on my call. So, I walked into the other room to find Luke inside the refrigerator....naked......trying to get a glass of milk. Apparently, his trip to the bathroom made him thirsty and putting his pants back on was just a little too much effort.
"Help. Mom. Cold!"
Yep. If you climb into a refrigerator while naked, you will get cold. Lesson learned.
Don't tell me we haven't had an educational summer vacation.
| Luke always tries to help supervise his sisters....fully clothed and without a glass of milk. |
Saturday, August 13, 2016
Squish - 4 months
I mean.....
First, her travel schedule has been overwhelming: Waco to see "Fixer Upper", Fredericksburg with grandma, Austin to see friends, and Chicago and Shreveport for work.
Who doesn't just pass out sometimes after a good party???
And at the end of the day, nothing beats a good bath.
It's a tough life for Squish, but she stays happy 99% of the time. Watch out for that 1% though....
Wednesday, August 10, 2016
It's Time
....I'll lose weight later....
....I'll save money after this one last vacation....
....I'll clean that storage room next week....
...I'll start blogging again when I am not utterly exhausted....
Well, enough of that. It's time to start writing again.
Throughout the long nights when we are awake with Claire while she doesn't feel well, nothing brings me more happiness than reading old posts from when Luke and Claire were babies. I had convinced myself that I wouldn't forget all of the "little moments", but considering that I'm lucky I remember my pants most days, my memory is sub-par, at best.
Consider this little gem of a conversation:
(After a night of about 3 hours of sleep and a loooonnnnngggg workday, I had just slipped into a hot bath with a glass of wine, when my little sidekick charged through the door.)
Luke: "Mom, I gotta shit."
Me: "You have to poop?"
Luke: "Yeah...shit."
(sigh....I don't know where he ever heard that...)
Me: "Ok. Go ahead. You don't need me - you can take care of yourself."
(Luke proceeds to finish his business.)
Luke: "All done!"
Me: "Did you wipe?"
Luke: "Yep. Look!!"
(Not checking wasn't a gamble I was about to take.)
Me: "Luke! There is no toilet paper in here!!! You said you wiped!"
Luke: (slapping his hand to his forehead) "Oops!!! Forgot"
Here's to hoping that I remember these funny conversations and that Luke remembers to wipe.
| Throwback picture to last year...... |
