Disneyland, Feeding Tubes & NestlèQuick Pt 1 


I’m casually jumping in to this blog post pretending it hasn’t been months since we’ve spoke. I’ve been working on something a little bigger and exciting (yay!) but wanted to give a nod to my old friend, the Internet. Also, remembering that I never want to be a silent voice of the special needs community, I am going to give smaller, story telling posts a whirl. Posts which will have no real life application and possibly no inspirational quote or Bible verse to take home and chew on. So here’s to creative writing and a possible life line for all the struggling people in the world ! * fist bump *

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I’ve lost track of how many times we have visited Jane’s hospital in Orange County. It is situated minutes from the Happiest Place on Earth. So you can literally get to a high point of the hospital and spot The Matterhorn or the fireworks show if you really wanted to. So fun and also so cruel.

Prior to one of Jane’s visits about a year ago, Rich and I decided that enough was enough and we would not just take Jane to the hospital, but we would be super duper fun parents and take her to Disneyland as well. (NOTE: This was all my schtick, and Rich could care less about visiting Mickey). As a good mother, gosh darn it, I would take my baby girl on a Disney ride.

This time the appointment was only a clinic appointment. Scheduled for what would take only 1 hr. Deciding not to drive across the state simply for a 1 hr appointment, Rich took a few days off work, we stayed at the Hyatt in Newport Beach, we would go to Jane’s appointment and then end our trip with Disneyland and the beach. Perfection! Oh, and I was 14 weeks pregnant, so we would be bringing that little baby along too.

The day before our trip I started feeling myself come down with a cold. The kind where you pretend like you’ll fight hard against it but you know the inevitable crash will come (Cue Bruce Almighty, “Smite me, almighty smiter!”)

We left Sunday after church. I had done most of the packing pregnant and under the weather since Rich had to work up until the moment we left. I slept on the car ride there, downed gas station Emergen-C packets and packed my own essential oils, apple cider vinegar and lemons from home. Yes, apple cider vinegar is a thing.

After 8 hrs and a very questionable gas station stop in Santa Monica (Did you know that not ALL of Santa Monica looks like it’s out of the movie Clueless?) we arrived in Newport and settled in, hoping to get rest for her afternoon appointment the next day.

The next morning I tried coercing Jane to eat as much of her oatmeal and hard boiled egg, as I would do every morning. Adding in maple syrup, butter and chia seeds just for extra calories. After breakfast we packed up and headed to our appointment 15 minutes down the road. I was still feeling a lot like I had a sinus infection of some sort and sore throat.

We arrived in the parking garage and I remember asking Rich, “How do you feel about today?” I tend to go from shallow to deep real quick with my sweet unassuming husband.

Sample conversation,

“Oh hey! We should get In&Out tonight, I’m craving their fries! Do you ever just cry alone?”

This is what Rich has to prepare himself for literally everyday.

So after an uneventful drive, probably listening to some sweet jams, I asked him to go real deep. He really had no specific feelings on the appointment other than that it was happening, and we would be going to it. I, however, wasn’t feeling exactly emotionally stable about all of it. Our roller coaster ride with Jane’s health was exactly that, and you just never really knew when or what they would suggest or determine as Jane’s “next best step.”

We checked in and followed the nurse assistant through the clinic process; getting Jane’s height, blood pressure and weight. I nervously asked them to tramslate Jane’s kilograms into pounds for me. After forcing high calorie oatmeal into her mouth for months, much to my demise, Jane was still, very small.

After these steps we plopped ourselves in the exam room and welcomed Jane’s neurologist – Dr Z. You can feel Dr Z’s presence from a mile away. She is barely 5’1 and yet you know she can dominate whatever situation she walks in to. She’s been a pediatric epileptologist for 30 yrs, has children of her own, basically runs the neurology floor of a world renown epliepsy center, runs marathons and has even undergone brain surgery herself. And the thing about me is I may come across bold and confident on stage or next to submissive people, but put me in a room with a Dr Z and I am a straight up golden retriever. Ready to submit to your command. We love and are scared of Dr Z.

Dr Z entered and took one look at Jane and noted “She is too skinny.”

I agreed with a nod and a stammering plethora of excuses of how Jane fights us when we try to feed her, and how her seizures leave her too tired to eat. I don’t know what I was trying to accomplish but the ” next step ” for Jane left me speechless.

“Jane needs to have a feeding tube”

Pregnant, emotional, with a sinus infection, and feeling completely defeated, I sat down and wept.

For over 6 months we had battled with Jane’s weight. I had added grass fed butter, whole milk and maple syrup to every meal she had. We bought an organic nutrition boosting powder that I was sure would help her. I remember Jane being completely exhausted as I forced a high calorie shake into her mouth and telling her through tears,

“Jane, if you don’t eat, they are going to give you a feeding tube!”

The thing was I don’t think I actually believed that.

We had lost so much with Jane. Her ability to move in certain ways, her vision, her speech, her health. One thing we had boasted was that she used to have a feeding tube, but we came out like champs and she learned how to breastfeed and take a bottle at 2 months old. When everything else was a loss, we had our one victory, “Well, she used to be on a feeding tube, but now she’s not”.

After this appointment, we would not be able to say that anymore. For the next 30 minutes the nurse assistant kindly tried to convince me how much a feeding tube would help Jane thrive. And Dr Z became more human than I had ever experienced. Telling me how much it would help ease the stress, especially with a new baby coming. Yet all I could do was cry. And of course I kept blaming my tears on my pregnancy like every emotional pregnant woman does.

In hindsight they were both absolutely right. Jane’s eating abilities were poor, to say the least. I toted a high calorie shake every where we went and Rich and I exhausted ourselves daily making sure Jane had enough to eat.  But in the moment, they might as well have said, “You don’t know how to keep your child healthy, or feed her, so let us take charge of that now.”

It all felt like a blow to my abilities as a mom. The abilities that I was supposed to instinctively have as a mammal. The passions that I had to cook for my daughter, to experience new flavors with her, to have control over one aspect of her growth, it felt like it was being taken away.

Rich knew the spot this was all hitting in my heart because as soon as we got in the car he hugged me and said “You’re not a failure. You’ve done everything you can. Jane needs this, and it’s not your fault.”

We drove back to our hotel, canceling plans we had made with friends in the area because I was greiving a thousand griefs and sobbing a thousand sobs. My expectations and my desires had died. And the next day we would go to Disneyland in the middle of mourning something I fought so hard to keep.

We fought a little, as you do during stressful moments. We wandered Newport for some dinner, and caught the sunset.

That night we went to bed praying, and I went to bed crying. I produced so much tears in fact that I woke up completely healed of any remnants of a cold. I had literally cried out my sinus infection. But the good news was I was ready to take on Disneyland. See, I told you I can go from shallow to deep real quick.

Pt2 is next…

Getting ready to see Dr Z.


Our evening after tears.

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2 thoughts on “Disneyland, Feeding Tubes & NestlèQuick Pt 1 

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