Disneyland, Feeding tubes and NestlèQuick Pt 2

After grieving over the news of a feeding tube and being healed of my sinus infection, we woke up to D-Day. For those just tuning in, that would be Disneyland Day. I think even Jesus knows what a big deal Disneyland is because God shined a bright light on this day. I woke up feeling 90% better, the painful news of the previous day had dulled, and we were overall chill as we were about to head off to possibly the most crowded and overpriced attraction in the state of California.

Janie was all packed up and we headed out promptly but very chilled. Like I mentioned.

If you’ve ever been to Disneyland, you know that it’s RIGHT by the freeway and even the exit signs as you get closer are part of the whole experience.

Katella..Santa Ana Freeway…Disney Way! Oh my gosh we’re freaking there!!!

At least I’ve heard this is how some people react.

We hit heavy traffic outside of the park on a random Tuesday in September but kept our spirits high holding on to the unspoken spousal agreement of ,”This is potentially the most stressful day of our lives, but we will not stress. We will laugh, we will not bicker. We will laugh. Will.Not. Bicker.”

We held it together rolling down the windows, taking in the sounds, blaring the Disney Pandora station. It didn’t matter what the day held, this was our redemption day in light of the previous day’s sadness. Our baby may be on the brink of needing a feeding tube, but today, she would be at Disneyland.

The ticket line was equally crowded. Almost abnoxiously so, if we had chosen to be irritated of course. But we were not irritated people, we were happy people at Disneyland honoring all that Walt built.

When we finally got in the park we went to Town Hall to get hooked up with the whole “skip lines and get to the ride at a certain appointment” thing that they do for those with special needs. It was a really nice perk and perfect for our sensitive babe.

I got a chai from Starbucks and bought Jane a NestlèQuick-on-the-go something-or-other chocolate milk. You see, the feeding tube surgery at this point was not scheduled. As far as I was concerned, I still had those weeks in between the diagnoses and her next weigh in to really get down to business. And usually I would be a picky, organic loving mama who would turn her nose up at a Nestlè product. But when they tell you that they will sew your child’s abdominal muscle to her stomach in order for you to pump food into her, you go big or go home. Or get a feeding tube…

Jane and I took our beverages and Rich hid in a small fabricated alley way to eat his egg sandwich like the introvert he is. We then went to take a picture in front of the castle, surrounded by a dozens of strangers who would inevitably be in our picture.

This was a special moment because about two and a half years prior, Rich and I went to Disneyland sans Jane. Well, sort of.  I was pregnant with her and didn’t know it yet. We rode every ride, and we rode it hard. We spent 12 hrs a day running around the park and I just couldn’t figure out why my pants were feeling so tight. I blamed it on the Main Street corn dogs. Somewhere on the I-5, on our drive home, it dawned on me that I was probably pregnant. I broke into a cold sweat. Traded in my hot Cheetos for freeze dried apples (for the baby of course)! and the rest is history. Fast forward and we took a picture in front of the castle with our then 1.5 yr old “Disney baby” and baby enutero.

We scurried to our first ride appointment time at The a Story Book ride. I couldn’t think of a more magical or fitting ride for a little girl’s first time at Disneyland. We parked her stroller next to the hundreds of unlocked strollers and hoped for the best in people.

Whilst in line, it started to sink in how many people were actually there that day. We even passed a cast member who commented on , “how busy it was for a Tuesday.” It also become more apparent that this was one of Amaheim’s hot days. Around 10:30am the morning air had disappeared to NeverLand and it was nearing 90 degrees.

It also dawned on me that Jane should not only get some hydration, but also some calories (we had a lot riding on those calories). I tipped her head back and asked/commanded her to “Drink”. Jane would follow this command and wiggle her tongue in a lapping motion. She opened her mouth for 7 seconds and took what was probably 1 oz of chocolate milk. Half of that ending up on her Starwars tee.

“That’s ok”, I told myself. “We have all day. And we will. Not. Stress”

Jane was less than thrilled on her first ride, and much to our entertainment, Jane was less than thrilled on all the rides. And that’s fine. We only paid $4,000.00 to be there, so it really wasn’t a huge deal. I had a “mother’s intuition” that turned out to only be “a mother’s desire to go to Disneyland”, that Jane would be tickled by all the ambient sounds and gross motor stimulation of the rides. Turns out, a child suffering from sensory disorder does not consider the thematic elements of Disney sights and sounds magical, at all.

After The Story Book ride, the Peter Pan ride, 95 degree weather, thousands of people, and no nap, Jane started to lose it.

For the remainder of the late morning and early afternoon we danced a danced of a screaming tired child with a sensory disorder who only wanted to sleep on every ride.  There was sweaty and sunburnt everything, a green poop blowout that had literally never happened at home but of course happened in a moving sea of one thousand people. And a force fed toddler who had rejected chocolate milk crusted to every surface of her face and chest.

To all who come to this happy place… Welcome.

In my efforts to get the most bang for our buck, we had successfully hit about 7 rides in 3-4 hours. I use the term “successfully” loosely. By 2:30pm on that day in Anaheim, the entire Harris family had lost it. You know how when the kids are losing their minds and it often makes the parents, for whatever reason, turn against each other, when really you should team up and gain victory over your children but instead you just get mad at each other? Yeah, that thing happened.

Rich and I took our time out from each other in front of the Jedi training Star Wars show. He spent a nice long breather in line for a Neptune Burger or whatever and I held our child who had lost all chill and started screaming her head off, in my arms, in front of God, Mickey, Darth Vader and everybody.

At 2:45pm, as I held my screaming child, I let out a curse word that I have only used once effectively in 7th grade. And two times since becoming a mother. One of the really big ones. I didn’t say it at my child, I just said it because of my child.

I returned the precious Disney baby to her father and confessed my cussing transgression.

Now, I don’t want to excuse rash behavior, but after exclaiming this all powerful cuss word, the day just got better. Maybe I tapped into a language that Jane has spoke all along, but the Harris fam had once again found their chill.

The rest of the day was a cool down. Literally, the temperature cooled. We were happier people. Jane got in a nap in the shade while Rich played single rider on Splash Mountain and she just felt better. She still refused to eat anything of significance but peace was slowly made in my heart and thankfulness sprouted that there was even a medical option available for her sensitive self. And it was clear that day that she was, if nothing else, sensitive.

I am not going to say that Jane enjoyed Disneyland, but we did get one picture of her smiling on the teacups. So I’m pretty sure she loved every minute of being there. That’s the magic sorcery of Disney marketing.

We decided that the fireworks show would be too late and too loud for our overtired girl so we headed out of the park much earlier than I would ever dream of leaving Disneyland. We got into the Timon parking lot where there were no people to be found, and for the first time in 8 hrs, the little stinker talked and laughed.

Jane had a better time in the car ride to Whole foods on our way back to the hotel then she did on any ride at the $200 theme park. But we did it. We went to Disneyland. And for the love of all that is good, I was a good mom.

*I’d like to thank Rich’s grandparents for funding our tickets to Disney. Not having to come up with the money made it doable and worth it . We love you.

*Rich and I are now accepting donations for a kid free Disney trip where we will enjoy every ride because I am no longer pregnant and am free to get crazy, and no toddler will be there to scream at us.

*I have not used a 4 letter word since that day in September 2015. But even if I did, it clearly makes everything better… 


2 thoughts on “Disneyland, Feeding tubes and NestlèQuick Pt 2

  1. I found this sweet blog by mere accident. But I know it was God! You have a way with words that mAde me feel as if you were reading my mail. We have a son who has a health conditions and a fairly new genetic syndrome diagnosis. It started 6 years ago . It’s ing story, but reading your blog made me feel more normal. Like all the emotions you feel and your transparency- it was like I’m looking in a mirror.

    • That is so awesome Melissa, thank you for commenting and connecting! So sorry about your son. It is the hardest road. It always helps to keep us going when we know there are others doing the work alongside us! Keep being a fantastic mom. I pray for many massages and relaxing beverages in your future! 🙂

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