Eisley’s Birth Journey

In the beginning of December 2019, my 5th birth brought us Sterling, a wise and wild soul who only needed a mere six days to complete his work on earth. After his departure from this world, we were left with shattered souls and broken hearts. I gave birth, my womb was empty, but this time, so were my arms.

A still from Sterling’s birth video


And one day, in the midst of our grief, we learned of another who would join our incomplete family. At the end of December 2020, another wild soul made her way to us earthside.

After five fast labors, all between 1 and 5 hours long, I was used to rushing. I’ve rushed to hospitals, rushed to call the midwife while she rushed to get to me. We’ve even scrambled to fill the birth tub in time. My last three labors all began with my waters releasing and then, we didn’t have much time before baby was born. Eisley knew I needed a little more time and I was delighted to have a labor begin with waves instead of the familiar burst and rush of waters.

Eisley’s birth space

On the last day of December, I woke up with mild waves and called upon my birth team. The tub was already blown up and Randy (husband) lined and filled the pool, while my birth team trickled in. I was close to being fully dilated when everyone showed up, but baby was on the opposite side and needed to rotate all the way around before coming down to be born.  I wasn’t used to a relaxing, slower labor.  Lisa Marie (midwife) reminded me to enjoy my labor and that was something I had never considered before. Enjoy. I can enjoy this! It is work and it is hard, there will be some pain, but I can enjoy this. The waves felt intense, but far apart. I reached inside to feel where baby was and was discouraged by how high she felt. I knew we could have a while to go and I didn’t want everyone waiting on me.  Lisa Marie had to remind me again to enjoy this time. I got into the tub to float and relax during the waves. When a wave would begin, I would tell myself in my head, “I welcome this wave and I enjoy my labor” and those words somehow shifted my mindset, because the grip of pain would release a little when those words were in my mind.

My midwife, Lisa Marie, by my side

My birth affirmations were hung all around the room, with drawings of me and baby made by the kids, scriptures written out by my grandmothers and mom, words of love and encouragement from friends and family. The corner of the room was dedicated to Sterling,  his hand and foot prints and photo adorned the shelves along with his candle. My sister lit the candle for him and it burned while I labored. And Sterling brought heaven down. I felt him there with us and I wasn’t surprised one bit by the strength of his presence. I was, however, pleasantly surprised by the amount of feminine energy, strength and support that I felt. Three of the strongest women I know, my mom, my sister, and my midwife (who is family to me) made up the majority of my birth team.  The notes of encouragement that hung on the walls around me were all written by different women in my life, each very close to me. Whether there in person or in spirit, I felt the peaceful, powerful strength of all these women together, like a pack of lionesses protecting my birth space and holding space for me.

Sitting in Queen’s pose, with a rolled towel under my belly, to help baby move into position.

My last birth had been private, just my husband and me with our midwife and her assistant/husband. This time, giving birth after the death of my baby boy, I knew we needed more support, so my mom and my sister became my doulas. My husband, having done this with me five times before, is a pro at being my birth partner. He has been right beside me, as my anchor, during the most intense parts of birth. He has held me, held my hands while I squeezed his, rubbed my back, kissed me, spoken birth affirmations into my ear, and has been right next to me during every birth. This time was different. The poor man was exhausted and drained after a long, crazy week, plus being up at 4am to work. It became clear that this time, HE needed support during the birth. He spent some time with me beside the birth tub, providing hydrotherapy by pouring water over my back. Then he went to go lay down for a minute to rest in another room. He ended up falling asleep and when Lisa Marie went to check on him, she covered him with a blanket. I love this detail because it reminds me that sometimes birth partners need support and rest. And the simple act of placing a blanket on him tells me that she was in tune to Randy’s needs as well. Fathers often tend to be forgotten during birth, but this is another reason why midwifery care is so magical. Our midwife took care of her laboring mama and she took care of dad too.

Randy providing hydrotherapy.

Lisa Marie told me that Randy was taking a nap so he could be rested when it came time to push. I was glad he was resting, since we could all tell that he seemed tired and just not himself. I noticed that I wasn’t completely myself either.  In the past, I’ve been chatty in between contractions. I’ve laughed with mom, sister, and husband right up until it was time to push. This time, I went inward. I was quiet, silent even. I would whisper to baby, “It’s just you and me together. We got this. We can do this.” For the first time, this wasn’t just me bringing a baby into the world- it was a journey that baby and I were on together. While Randy was out, the women stepped up to become my fill-in birth partners. My mom and sister each had turns pouring water over me. My sister took pictures to document the birth for me. My midwife was often by my side, rubbing my back and offering words of encouragement.
The waves would bring pressure and I would feel like I was close to pushing, but in between contractions, baby still sat high. I mentioned this to Lisa and she said I could try gently pushing with the wave to bring baby down. She sensed it would be soon and encouraged me. She spoke words of affirmation and reminded me that I was safe, baby was safe, and that I could safely bring baby into the world. I didn’t realize how much I needed that reminder until she said those words.

At one point, I was in my head thinking about who I wanted to be in the room when it was time to push. Mom? Sister? Just Randy? I was sorting through different scenarios in my head and finally, I needed it all to quiet. Finally, I just let go. I released whatever expectations I had surrounding this birth. I let go of my fears. I released the feeling that everyone was waiting on me and I realized, no one was waiting. Everyone was simply present. They wanted to be there and I wanted them to be there and I could take my time. They were open to whatever direction my birth would take and I needed to be open just the same. I decided to let the day play out however it was meant to. I didn’t focus on who would be in the room and when, I just let my labor run its course.

My birth team flowed in and out of the birth space. I was happy and at peace with however this was going to be. By now, it was my sister and I in the room. I was in such a meditative state, I didn’t speak. I focused on complete relaxation and surrender, allowing my body and baby to do what was necessary. I learned later that my sister was praying over all of us, specifically praying that any unspoken needs would be met. I remember thinking that it was amazing how all the women were so intuitive. They always seemed to know exactly what to say or do. While I know they all have strong intuitions normally, I know now that something heavenly truly was taking place there that day. I wonder if Sterling interceded for us too.

Lisa Marie would peek in or come into the room to just listen. She was in tune to me and every wave, every sound, even down to the expression on my face. Occasionally, she would step out for just a minute or two to give me space and to set up. The door to my bedroom/birth space was open so she could keep a watchful eye on me as labor progressed. Lisa told me that she sensed I could use my mom’s support and asked if she should go get her. I said yes and my mom came right by my side. She sat beside the tub. Her presence was quiet but strong. She whispered gentle words of encouragement and she was everything I needed.

I needed baby to move down and I whispered, “baby, come down, come down, come down”, then I barely pushed during the next wave. Suddenly, I felt 3 contractions right in a row, back to back to back. Randy and Aaryn were in the kitchen getting a bite to eat. My midwife stepped out of the room for just a moment to get a tray. It was just me (and baby) and my mom in the room. The pressure increased and I felt my waters release. My mom saw my water break and whispered, “okay”.  I was relieved because I knew that she knew we were getting close and at this point, I knew she wouldn’t leave my side. *She had stepped out with both Oliver’s birth (to settle a waking kiddo) and at Ever’s insanely fast birth (to call the midwife).

With the next wave, I found balance between relaxing and gently pushing, taking care not to bear down too hard. I reached down to feel if baby was crowning, but I didn’t feel her yet. This made me think we still had a few contractions to go, but I was wrong. Suddenly, I felt baby’s head come out into the palm of my hand and out she came in one contraction, head then body in one smooth flow of motion. There she was, floating beneath me, small and lovely and frosted like a birthday cake. I was captivated by her beautiful vernix all over her face and body. I looked at her and realized she was looking right up at me, eyes wide open, like she had something to tell me. Then I recieved her message, as I realized her cord was wrapped all the way around her neck and wrapped again around her shoulder. I was stunned for a split second and then I remembered my training, acted quickly and calmly. I gently unwrapped the cord from around her neck and then from around her shoulder. I brought her up out of the water to my chest and sat back in the tub in complete relief, as everyone else entered the room, shocked and elated. We did it.

Eisley, I carried you for 38 weeks, 38 long weeks full of fear and detachment. I struggled to connect in the earlier months, when fear and trauma consumed me, but you showed me grace and you waited. You fought your way into my heart, like your big brother fought to give us six days. Loving you is effortless, but you’ve fought through a lot of darkness to get through to me. You’ve peeled back the layers of grief and trauma and let your light shine on us. You’re showing me a new way through life. In a lot of ways, it’s as if you’re carrying me now, as we go through life after loss together. You have taken your place in this family and have brought with you something new and fresh, a different kind of joy that I can’t explain or describe. Thank you for being ours and for teaching us that grief and joy and beauty will always coexist. You are a part of me and a part of him, and still entirely your own. You are and always will be a Wayfinder in your own right.
I love you, darling girl.

Photography by Vikki J. Photography
Photography by Vikki J. Photography

To the mama expecting another baby after loss:

Being pregnant after loss was the second hardest thing I’ve ever gone through, aside from the death of my son. I navigated through plenty of fear, worry, guilt and numbness, as I tried not to fall in love to protect myself. And then guilt consumed me for allowing myself to remain numb. I’m here to tell you that even if you feel disconnected, you love this baby and you have from the start. The difficulties of pregnancy after loss are worth it. When he/she/they arrive, you will be on a different journey, where sorrow and beauty collide. All the joy, excitement, beauty and love will catch up with you in the end, when you hold that baby in your arms. I keep your babies in my heart. I remember the ones who died and I celebrate the ones who come after death, to make your forever incomplete family just a little bit more whole.

Photography by Vikki J. Photography

The Stigma Around Disabilities

I’ve been sitting on this one for some time now. The thoughts have been swirling around in my mind and I haven’t quite been able to gather them and put them into words. I am fearful that my tone will come off angry when really, I am hurting and heartbroken.

If you feel angry or defensive after reading this, I would challenge you to dig deeper into whats beneath that anger. Sometimes when we peel back defensiveness, we find conviction and a contrite spirit and that is a beautiful thing. I don’t share this to make anyone feel bad or guilty, but instead to share my point of view as a mama of a brain damaged child and to offer a different perspective.

First, let me tell you a story. A few years ago, I was in a public restroom and I used the accessible stall. When I came out, there was a woman in a wheelchair waiting to use the accessible stall. In that moment, I felt so stupid. The open doors of other stalls mocked me. I was embarrassed and ashamed that I hadn’t thought about the people who truly need that stall, while I (priveliged) could’ve used any other open stall instead. Rather than beating myself up and allowing guilt to consume me, I apologized to this women for being inconsiderate and made a vow that I would always leave the accessible stalls open for the ones who need them. When we know better, we can do better. So, here we go.

Before I get into this, I feel like I need to explain in more detail what happened to Sterling. I have considered leaving this part out, because it doesn’t matter whether he was born with or without the damage- our love would have been the same and my feelings about his life and death would’ve been exactly the same.
But in an effort to better educate about Urea Cycle Disorders and since it is a part of Sterling’s story, it’s important that I explain. Sterling was not born with brain damage. He was a neurotypical newborn. He did not suffer a brain injury from lack of oxygen, HIE injury, or birth asphyxia.

Sterling was born with an inborn error of metabolism. My husband and I are not carriers. It was a random mutation only found in Sterling and no other family members have it. Sterling was born with a rare metabolic disorder, also called a urea cycle disorder, called Ornithine Transcarbamylase deficiency.

Ornithine Transcarbamylase (OTC) is a liver enzyme that aids in the breakdown of protein and ammonia in the body. When a person lacks OTC, their body is not able to breakdown and flush out ammonia.

Ammonia is a neurotoxin, so when it builds up, it can cause damage to the brain. High ammonia levels (Hyperammonemia) left untreated for too long can create permanent and extensive damage. The key is to diagnose correctly as soon as possible and properly treat as soon as possible.

There are different types and severities of OTC Deficiency, so while your cousin’s friend’s aunt’s neighbor might have it too, their life might look very different than Sterling’s did (or would have, had they saved him.)

So Sterling was born neurotypical with a metabolic disorder. Every time he ate, his body wasn’t able to process the proteins correctly and his blood became flooded with ammonia. Over the course of a few days, going misdiagnosed, his brain was marinating in toxin and the ammonia destroyed his brain. His poor little brain was so damaged that it completely shut down all the rest of his organs and he died.

But what if they had diagnosed it in time? What would his life have been like then?

This is impossible for me to answer. I just don’t know. Nobody knows. It would have depended on when they would’ve found it, how fast he would’ve been treated, and how well it would’ve been managed after that.

But what about his quality of life?

Those words are so triggering to me, to be honest, but they’ve been said to me over and over. At first, I didn’t want anyone to know he had suffered brain damage, not because I was ashamed or embarrassed, but because I know the world we live in. It’s one where people measure your worth and your “quality of life” based on your abilities.

When Sterling died, it was tragic. Everyone was shocked and in disbelief- until they learned he was brain damaged when he died.

Then, suddenly, it wasn’t so sad. Suddenly, people acted as if we were lucky that we didn’t have to live the rest of our lives with a disabled child, as if God performed some mercy killing and we should be grateful.

Actual words that have been said to me include:

“…but think about his poor quality of life.”
“At least you don’t have to live with a brain damaged child.”
“…but he would’ve been special needs.”
“He might’ve needed care his whole life and the rest of yours.”

So, I will address these now and break down why I’ve been so triggered and hurt by each of these:

“Quality of life.” Did you know there is actually no way to measure quality of life because it is so individual to each person?

I don’t mean to be harsh, but let’s really think about what we’re saying when we imply that someone is better off dead because their “quality of life” might not have matched up to what WE think a good quality life looks like.

How would you measure quality of life? How would you separate the high quality from the poor quality?

You would have to consider people in all kinds of different situations that are less than ideal. This would include people living in abusive homes, people who are starving, people who are depressed or anxious, people living in poverty or even financially unstable people, people with chronic pain, chronic illness, the visually impaired, the hearing impaired, people with cancer, or addiction, people who hoard, -you name it.

Are these people in a worse situation than you or what YOU think is a worse situation than yours? And what about you? Do you or have you ever fit into any of these groups of people? Would it be fair for someone to say that your quality of life is low because of your struggles?

You don’t hear about a starving orphan who passed away and say, “Well, it’s good that they died because they were suffering anyway.”

Or if the addict dies of an overdose, you don’t say, “Well, they must’ve been miserable so it’s better this way.”

But when a brain damaged person passes away, suddenly, people say it is “better this way” because “they’re in a better place.” I suppose this could be and probably has been said about anybody who has passed on, but I’m not sure “They’re in a better place” has ever been a helpful comment.

Life is hard. It’s hard for everyone and everyone’s life look different. But just because someone’s difficult looks different than our difficult, that doesn’t give us the right to decide which lives are worth living and which ones aren’t. We can’t hear from Sterling himself on what he would’ve considered a good life and we do not get to decide for him.

“At least.” These two words will be the bane of my existence. These two words should never be said to any grieving person or to anyone having a hard time. It enforces toxic positivity and tells that person that you’re trying to minimize their pain. ESPECIALLY, don’t say these worse when you’re insuating that this person’s child or family member is better off dead. I would choose a brain damaged baby over a dead baby any day.

“Special needs”. Disabled, medically fragile, medically complex- Sterling might’ve fit into all of these categories and we would’ve loved him just the same. We WANTED him. We wanted HIM. It didn’t matter what challenges he would’ve come with. I’m not perfect, but I am a good mom and I would’ve been damn good at caring for him. Pity would’ve just pissed me off- I would’ve needed support. And love. And for people to love him and accept him as much as they did before the ammonia poisoned his brain.

“Care for the rest of your lives”.
It doesn’t matter what kind of care he would’ve needed or if I would’ve been caring for him the rest of our lives. That may not have been the life I would’ve chosen for him, but I would have chosen that life for me. I would rather be taking care of him than grieving him for the rest of my life. People who act like I should be relieved he isn’t here or people who are relieved hurt me deeply. I’m not relieved. I’m devastated.

Having a baby who ended up brain damaged really opened my eyes to the way a lot of people actually view disabled people. It breaks my heart that there is still this stigma surrounding these worthy, beautiful, valuable people. We have such a long way to go.

I can’t tell you what Sterling’s life would’ve looked like had he lived or what disabilities he might’ve had, but I can tell you, no matter what, he is worthy. He is equally as important and valuable as everybody else. He is wanted and loved. His life was precious and though it was different than yours or mine, his life was worth living.

Grace

I recieved this question from another loss mama: how do you manage the bad days with kids?

As I heated store bought soup for dinner, I realized the answer to that question.

Grace.

Grace to the people around you, but especially, give grace to yourself. Shower yourself with grace. Bathe in it. Lather. Rinse. Repeat.

Grace for me yesterday was serving pre-made, store bought soup for dinner. It was accepting help when it was offered. It was neglecting the laundry to soak up snuggles and using paper plates so I didn’t have to worry about dishes. It was wearing pajamas all day and watching way too much TV with my living kids.

Then, it was throwing every ounce of guilt out the window, because this is grief. This is survival. I’m not the mom I used to be and for now, that’s okay. We’ll find a little more normalcy with each day that passes.

And don’t worry- your children will give you all the grace you need from them too.

hi, it’s me.

If you’re new here, you’ll quickly learn that I’m not one for selfies. I tend to feel more comfortable on the other side of the camera, unless I’m in a photo with my kids.

My husband took this photo of me yesterday and I felt that I should show my face today, so you can get a better picture of the mama behind the words.

Every day, I write to my boy, about my boy and all about my thoughts and feelings as I openly mourn. You’ll hear a lot about my jouney through grief, while I navigate the loss of one who I cannot bear to live without.

If you’re another grieving mama, I hope you’ll feel safe here with me. I started sharing as an outlet for my grief, as well as a way to connect with other grieving moms and their families. And at some point, I turned into a bit of an advocate mama, once I realized how much Sterling’s life (and our experiences) could help others in the long run. If I had only met another UCD mama before Sterling was born…

I appreciate you for being here. I am honored that you’re along for the ride and quite frankly, blown away that anyone wants to stick around and hear what I have to say.

For now, all I have to say is thank you!

Vitamin Sea

Darling boy,

You were near today.

Perhaps there’s something about the ocean that makes everyone feel a little closer to heaven.

You were there in the sound of the other children’s laughter, as it danced through the salty air.

I saw you in Oliver, as he stretched out his arms like wings and ran across the sea kissed sand. I had a vision of you doing the same on streets of gold.

You were with us today. These places where your presence is so undeniably strong, these are the places I never want to leave.

02.15.2020

Your First Bath

Not exactly how I always pictured it would be, but I’ll take it.

You were so swollen because your poor, little kidneys weren’t doing well. And then somehow, something in you started healing because you started peeing. You peed all over your nurse. It was so funny.

This is one of the most bittersweet photos I have in my camera roll. Some days, I see this and it cracks me up. Other days, it kills me.

I remember how much hope we had in this moment and how it all came crashing down a few hours later when we learned you were in a coma. It just depends on how I see the world that day.

Today, its a good day or at least, this moment is a good moment. I wish you were here so I could give you a proper bath, but I’m happy I had the chance to bathe you at all.

I love you, darling Sterling.