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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Then There Were Four: A Time to Laugh

At 5 weeks postpartum, we are finally getting settled into who our new girl may be. Calm and fiesty and an observer and lover of people. We’ve experienced enough of life with two littles that I now feel qualified, caffeinated, and rested enough to continue documenting our journey.

First of all, I am humbled by the parents who have started following or reached out through Instagram or other mutual friends. My blogging is never for the purpose of keeping an online diary (My journal, my husband and Jesus get to process my raw thoughts. Lord help them all. Lord help, the Lord?) And it’s not my personal cry for help (I’ve got some friends and family who have the obligation of watching me ugly cry 😆) But I keep writing in hopes that even one person on the journey of disappointment or special needs will know they’re not alone. So to know that people are finding our story and getting encouragement from it is what it’s allllll about for me and our family!

Our oldest daughter Jane has a complex form of epilepsy, most closely resembling Lennox-Gastaut syndrome. It’s not easy to manage and it morphs into all different kinds of seizures, requiring many medications. In addition she has diagnosed encephalopathy. Which basically means  her brain is going haywire all the time. Every day has lots of brain “hiccups”, twitches, spasms, and when we are not so lucky, tonic seizures that freeze her whole body and potentially steal her developmental progress. And for all the inquiring minds, marijuana is not a good fit for her type of epilepsy. Not that anyone has ever asked us about that…

Jane was not born with epilepsy, but acquired it due to a blood sugar incident at 3 days old and mismanagement of medications. Jane was a completely healthy baby in utero and was sent home from her natural hospital birth with a clean bill of health. So when people would ask us about how my second pregnancy was going with concern in their eyes, we would politely answer “Good!”, knowing full well that it wasn’t the pregnancy to be concerned about, it was the hours, days, and months postpartum to watch out for.

This knowledge of what had happened to our first, while experiencing the new life of our second is a tension that we face every day as the parents of a child with special needs, and one without.

It happened only minutes after Haven was born. She looked just like her sister and the same midwife who delivered Jane delivered Haven. The same postnatal Doctor examined me then as he did 2 yrs prior and although Haven was born in a flash and I was told I was “made to have babies”, instant grief to relive, or get back the first moments of Jane’s life set in. The same feelings occurred when we were home with Haven and my mom and I watched Haven gaze out the open living room window, her little mind perfectly aware and her eyesight intact. Such joy mixed with tears of grief since at 7 months old our oldest daughter had experienced such traumatic seizures due to misdiagnosis and incorrect medications that the part of her brain controlling eyesight was for all intensive purposes, erased.

Never before had we experienced such a miriad of emotions. “Redemption” used to be such a positive word but now every time something was “redeemed”, it also pointed to how something was previously lost, and thus, worth redeeming.

But for every milestone we come up against, familiar appointments, faces, or accomplishments, what can be more challenging than facing the grief is allowing ourselves to completely rejoice. In the words of a close friend after my 38 wk appointment with Haven, an appointment that had gone so differently with Jane,

“Breathe in each step in this process of redemption. It’s hard. It brings new grief. But it’s right and it’s what is yours.”

And then I said, “Well put”

And then she said, “I love you”

And it was totally beautiful and it all happened over text message as most meaningful conversations do.

The point is that even in the tension of a disappointing journey that is not over, it is ok to sit back and expect things to go WELL. To expect HEALTH. To laugh when something is happy and clap when an obstacle is overcome. There is a time for mourning but there is a time for dancing. Sometimes the two are separated by days and years, but sometimes they occur simultaneously and you learn to dance through tears and rejoice through sorrow. The victories are that much sweeter and the process is that much richer. It’s a tension not easily managed, but it’s where we’re at and thanks to both of our beautiful, silly girls, we’re getting better at the laughing.

For everything there is a season, a time for every activity under Heaven. A time to be born and a time to die. A time to plant and a time to harvest. A time to kill and a time to heal. A time to tear down and a time to build up. A time to cry and a time to laugh. A time to grieve and a time to dance. Ecclesiastes 3:1