Did Your Kid Die Too?

Part 4

This is part 4 of my serialization. To understand context, if this is your first time reading of "Did your kid die too" post, please click here to read the first three serializations.

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Despite my tiredness, I woke up bright and early at 7 because I had to pump… I had no fucking clue what I was doing, and because I have a resistance to learning the easy way, I wanted to figure it out on my own. But sitting in most places was not comfortable. Thank god for the big fluffy couch my parents bought when I was 5, which later got passed to me when they moved to London. I was sitting in my apartment, on my couch, eating my key lime cheesecake for breakfast, tits out, and pumping; while my husband slept. I can literally feel the obliviousness of that moment. I had NO CLUE. NO FUCKING clue the bomb that would be dropped on us. I packed my bags so we could check in to the Fisher House. And by 9, I believe we were on the road.

They were getting ready to take Lily for an MRI when we got there. We both walked down with her, and Joey stayed while I went back up to the NICU to pump… again, no clue and making no milk. All with my sore lady bits and swollen, sweating feet. Obviously, the MRI didn’t take long, but Joey wasn't quite all right when they came back up. He didn’t tell me anything, but later, I learned that the MRI tech murmured something like “Well, that's not good”. Shortly after, the Social worker and Geneticist came and spoke with us. She had lots and lots of questions for us. The most annoying one that we would get asked about 1000 times was, “Are you related?” The answer was no. Not in any way, shape, or form, lol. Anyways, shortly after the geneticist left, the social worker came back and told us that we would be meeting in the conference room. My days are a little jumbled here, and I cannot remember if there was one more day in between this or not, as all of our parents and siblings were questioned by a geneticist, and lots of tests on Lily were done. But those all could’ve happened later.

We left to get lunch, and I was hardly hungry as the same for Joey, and I desperately needed lanolin, so we drove our massive fucking truck down to downtown San Diego to go to a Walgreens down there. The cab was quiet most of the time. We hardly talked during that entire drive, and the day was incredibly gloomy. I had to walk 3 blocks to get to the Walgreens because we couldn’t get close enough to park. So Joey dropped me off eventually, and I walked to Walgreens, and then he picked me up. That was not fun. It was stupidly difficult to find Lanolin; at that point, I realized something wasn’t quite right with my eyes… Everything was hard to read.

Digression, did you know having babies fucks with your vision? Well, I didn’t, and it does.

Anyway, I returned to the truck and returned to the hospital for our 130 meeting with the social worker. Oh, and the team of doctors. They told us that there would be a team of doctors there… clue 1500 that something wasn’t right. On the way there, Joey said, “I think they are going to tell us something really bad. I have a really bad feeling about this,” I looked him dead in the eye and said, “Me too”. That was the first moment in my life where I was very sure of something. My gut was telling me no, screaming at me to listen to it all while trying to remain as positive as possible.

Ooof, so much anxiety is coming up while typing this. This particular scene is one that I have had to work so hard on with my EMDR therapist. While I’m not trying to forget Lily by any means, I am working on clearing out all the really fucking emotional traumatic shit. This meeting is/was very traumatic for me. I can still see everyone in that room sitting exactly where they were sitting on that day over six years ago. I can smell the inside of the conference room, the way the table felt under my clammy hand, and the pounding of my anxious heart. All while I tried to hide it all. I had some complex where I didn’t want ANYONE knowing I had emotions. The why doesn’t matter; what does matter is that I was trying so hard to stay stoic. So I have all of this going on inside and sit perfectly still.

We get to the NICU floor, and they take us into a conference room; when we first get there, it’s just us and the social worker. Who was a total fruit lol I have no idea why he was a social worker. He had previously worked in Oncology, so you would think he would be better at handling death, but… he was so Unemotional that I was taken aback. I know that doesn’t make sense, but in my experience, social workers are usually bright, cheery, and positive. He wasn’t overly negative, just kind of monotone. While we waited, we chatted, and he had a few things to discuss with us but nothing of significance. Eventually, all the doctors poured in. There were 5 of them: a Gastroenterologist specialist, a Neurologist, One NICU Doc and one NICU resident, and a geneticist.

To this day, I do not remember all of the exact words that were said to me. But here was the gist of it.

The doctors believed that Lily had a severe terminal genetic condition called Zellweger syndrome. What that meant was her body didn’t work properly at all. And she would most likely not live past 6 months old. They told us that she was 100% blind and deaf and that her brain scans showed an entire 1 ⁄ 4 of her brain actually missing. My heart just fucking dropped. All I could think was why. Why this? Why did it take so long for me to get my baby, only for her to be ripped away? I was a huge believer in God at this time. And I was so so so outraged and upset. But honestly, the worst part was the NICU doctor telling me that due to her brain development, she would have “no meaningful interactions in her life”. Like,

WHO THE FUCK TELLS A PARENT WHOSE KID IS GOING TO DIE THAT THEY WON’T HAVE ANY MEANINGFUL INTERACTIONS IN THEIR LIFE??!!

I still am so fucking angry at her. I probably need to work on letting that one go. NICU doctors are typically the embodiment of compassion. And what was funny, the Attending doctor was cold and callus, but her resident team was absolutely astounding. They would become my go-to for literally every medical question that wasn’t related to genetics until we left the NICU. The doctor’s resident followed up with some kind of platitude to soften the Attending’s abrasive comment.

At this point, I’m crying silently and trying so hard to hold my sobs in, and so is Joey. They told us that they would talk more about how the team would work and what the future would hold. We were then asked if we had any questions (I feel like that was a stupid question to ask, of course we fucking do). And I said to them, “Why? How? It took so much, so much for Lily to get here. She was my ONLY egg that was mature enough during my clomid cycle. She is here for a reason and a purpose, and she will change people's lives!” God bless the geneticist because she looked at me tenderly and said, “She will if you hold onto that.” I was determined to prove the NICU doctor wrong. Lily was here for a reason, and I knew that from the bottom of my heart and my fucking brain.

By this point, everyone in the conference room could see we had reached our limit and needed to be left alone to process and call our family. As soon as they shut the door, I fell into Joey, and we just sobbed. I wish I could say that was the hardest I’ve ever sobbed in my life, but sadly it is not. I have no idea how long we cried. But I remember telling Joey, “Her life means something. She has a purpose, and we will share everything about her with the world.” He was in 100% agreement with me. At that moment, all of our parenting “ideas” went out the window, and all we cared about was giving Lily the best fucking possible life she could ever have. As we called our families, which was absolutely awful, the skies parted and cleared, and a beautiful rainbow showed up, which I know I have a picture of. And that, my friends, that was the beginning of me finding joy and light in everything and my sweet Lily girl sharing her light. And I knew, somehow, I would be ok. I didn’t know how or when, but I just knew. There was a reason this was happening to me. I just didn’t know what or why.

That night we had to get groceries for us to have something to eat. We had hardly any money because it was near the end of the month. So we had to get what we could with about $50 in a high-cost area at a high-cost grocery store. I remember arguing with Joey about what to eat because I was highly emotional, obvs, and so stressed about everything that spending 7 bucks on a frozen pizza was too much for my brain to handle. As we checked out, the cashier asked us, “Are you having a good day?” I had to use everything in me not to cry. I responded with something like Yaaaa and left it at that. I don’t remember the rest of the day after that, but it was late by then, and my dad had called me to check-in. That began his calling me every day at 7 for the next year. I needed those phone calls; they meant the world to me. And were a lifeline for me for a very long time.

Joey initiated our very first caringbridge entry:

February 27th, 2018

Hi everyone. This website will be used to update all on Lily's situation.

Today the doctors sat Taylor and I down to explain that Lily has Zellweger Syndrome. We need to conduct genetic testing to confirm. That will take roughly three weeks. They

came to this conclusion based on a number of symptoms: apparent seizures, cysts on

brain and kidneys, and other abnormalities.

Lily does not have much time. Children with Zellweger Syndrome usually die within 6

months. Some make it a year. We will use this time to grow as close to her as possible.

Regardless of how long she is here we will give her the best life we can.

We appreciate everyone's willingness to support us. We will continue to post updates. If

we need anything we will be sure to ask.

The next day began a series of events and conversations that I never knew existed until I was thrown into this world. But Lily gave me a purpose. A true, real, genuine purpose, on that day. And that has never left.

On the day of her diagnosis that evening, I wrote this into my Journal

“Today we cried a lot over you. Daddy and I are just having a bit of a hard time knowing that you aren’t going to be here on earth with us forever. But it’s also better because we know at some point we will get to take you home. Tomorrow I’m going to bring you your own blanket and hat so you can have your own clothes. Your Brain isn’t all quite right but it doesn't matter because you’re perfect just as you are. But your seizures have stopped so you’re even more comfortable now. You are a strong little one and you eat so well. Mommy is trying so hard to make you food to eat. Tonight your Gamma is coming so she can spend time with you too. We love you miss princess Lily. Forever my baby you’ll”

Before I even wrote any of that, I downloaded a journal app for the purpose of writing this poem as it was in my head and I NEEDED to put it somewhere. I knew I had written a poem at some point, but I didn’t remember when. I wrote this shortly after her diagnosis on that awful day.

My Baby

My baby girl

Oh so sweet

Hair so soft

And skin so sweet

I love you so

And forever will

No matter here

Or there

My baby girl

You are forever mine

In my arms you’ll be

I will never lose that sweet feeling

Of holding you tight

My baby girl

I love you so

Remember your momma

When you go

OOOOOOF I clearly had so much intensity inside of me. I mean, how could anyone NOT have all of these emotions after learning that the baby they so desperately wanted was going to die? This was my first day living with anticipatory grief. I had no idea the pure torture that it would become to live in that space. Every day was a day of joy because she was still there, but knowing that day could be the day she left. That was crushing.

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I’m going to be honest. I did not touch this much editing wise. This whole moment is still incredibly traumatic for me and I struggle just to read it.

Thank you all for reading this far. So much love to you all!

Taylor Cecelia Brook

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