Did your kid die too?

Pt. 1 of my serialization, plz bare with me while I figure this out.

I’ve decided to serialize my book. It’s probably going to be a bit chaotic for a while so I do apologize. Everything written in here is from the past. Thank you for joining me on this book journey. I’m excited for you all to join. Much Love, Taylor Cecelia Brook

peep this protentional cover

Welp here goes nothing:

The most common question I was asked about Lily was “You didn’t know?!” My then-husband and I had no idea that Lily, our firstborn daughter, was going to be so extremely medically complex and with a very severe terminal genetic condition. I had so many people look at me perplexed when I would share her condition because they just couldn’t understand how no one saw anything on my ultrasounds.

That is the sneaky shitty part about a recessive genetic condition, a lot of time it’s not obvious externally until they are born. You couldn’t see that her fontanel was wide fucking open, you couldn’t see that a whole fucking quarter of her brain was missing, or that she couldn’t suck and swallow at all. I often grew extremely frustrated when people couldn’t believe it. It’s like they thought I was lying. Had I known about her condition, would I have changed my decision? No, I still would have had Lily and loved her for every moment that we had her here on this earth.

But I didn’t know about it, and there was nothing I could have done to anticipate what would become the hardest 6 months of my life. A time that would permanently change me forever. 

Something they don’t talk about a lot in the world of dead kids and grief is living with anticipatory grief.

“Most people think of grief as something that happens after a loved one’s death. But grieving can also occur before death. This experience is known as anticipatory grief, because it occurs in anticipation of a death or other type of loss — such as the loss of abilities or independence. Anticipatory grief can be experienced by loved ones, as well as the person who is ill or dying.” -Samaritan Healthcare

I don’t know why they don’t talk about anticipatory grief. Many people who have children die, die of cancer. You know they are dying. It’s a bit different when your child suddenly dies. But still, no one talks about it. Why? I know many parents, spouses, and siblings, can relate to what it is like to care for someone who is deeply ill and know that death is coming. It will be knocking on your door sooner rather than later. And it’s a fucking mind trip, it’s like waiting for the shoe to drop, but in my case… it was for my kid to die. I knew we had very little time with her, so you spend every day, hoping that today isn’t the last day. 

I’ve lived my whole life stuffing my emotions and having my firstborn baby girl be born with a severe terminal genetic condition only amplified that. I was never comfortable sharing my emotions with really anyone.

I wouldn’t cry in front of people and I sure as shit wouldn’t tell them that I was severely struggling and stuck in my head so deep that I couldn't even get out.

This left me reeling emotionally every step of the way during Lily’s life and after. I didn’t know how to manage my anticipatory grief… so I just pretended it didn’t exist. I never thought what happened with Lily would happen to me. All I ever wanted in life was to be a mom. I spent 18 months trying so very hard to have a baby and it just wasn’t happening. I would spend HOURS every week, crying in the bath or a closet, so my then-husband wouldn’t see me so upset. I didn’t even like crying in front of him and he had known me since I was 14. And I told no one, absolutely no one, about how jacked up in the head I was. Eventually, I shared with people that I was 1 in 4 who struggled with infertility. But for 17 out of the 18 months I was on that bus, the only people who knew I was battling infertility, were my husband and my little tiny community on Reddit.

I’ll be completely honest, they kept me going. I think I would have spiraled so much more had I not had this wonderful group of women. They stood by my side while I was “Still Trying”, that was our Subreddit name. And I had no idea that the few women who knew the most intimate details of my struggle would then become my literal pocket friends who would help keep me sane through all of this.

Our group chat was formed about 3 months before Lily was born, I think. We were “FabGrads” because we had all “graduated” and had a baby already with us or on the way. This chat was my lifeline. They were in my pocket ANY time I needed them. They kept me going when I would wake up and ask them “What if today is the day.” They are the only ones who lived this grief right alongside me, and I didn’t even tell them everything. I bet if I asked some of them, they too probably experienced anticipatory grief with Lily. All of our babies, that took so long to get here, they were supposed to be the best of friends. They had to mourn the loss of that ability too. It wasn’t just me.

Because I had known them all for so long, and I had never actually met any of them in person, I was free to share all my struggles, all my pain, and everything in between, well mostly. And I will be forever grateful that I had those girls. While we are no longer together as a collective “group” I love every single one of them deeply and cherish every moment they helped me. They would eventually be the ones to help me walk this path of anticipatory grief, the big whammy of grief, and beyond with chronic grief. I’m so sorry you’re here reading this book, while I’m glad you found it, my heart breaks knowing that you have joined the worst club with some of the best people. All my love to you and I hope maybe, someday, you can find peace too.

-Taylor Cecelia Brook

P.S. please enjoy my attempt to use AI to create a cover I wanted…. end up on canva doing it myself per usual.