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.

A Love Letter to Loss Mamas

Dear one,

There are no words, written or spoken, that could ever describe the unimaginable pain you are experiencing. In the depths of your broken heart lives an indescribable love that you have for your baby, one that will never fade, but will continue to grow for as long as you live.


He knows your voice. She knows your touch. They know your scent and the taste of your milk. They knew your love. Whether your baby lived earthside for a few minutes, a few days, or a few months, even if your baby was born sleeping, he or she knew you and the love you have for them. Even in that short amount of time, you gave them enough love to last a lifetime and beyond.


I know you didn’t get to mother your baby the way you had imagined or for as long as you had hoped, but every moment mattered and imparted a love that only you could give.


I love you, mama.

Time Travel

The 5th through the 11th of every month is a sacred space for us.

I imagine a world where Sterling lived and what life might’ve been like for us. I also travel back into my memories and remember what we were doing this day, 4 months ago.

On this day, 4 months ago, I was here in the ER with my newborn son. We were still waiting for the ambulance to arrive and transfer us to the hospital that would admit Sterling. We were being reassured by the nurses and doctors that all tests were negative and it was most likely a case of RDS.

They said he most likely just needed to be on CPAP for a week or 2 before bringing him home safe and sound.

On the 6th, back in December, I remember the fear I felt. I remember the hope I had amidst the pain of watching the newest, tiniest member of our family struggle to breathe. And I remember how quickly our hopes were crushed later this day. By the afternoon, Sterling had stopped breathing and was intubated. By the evening, his heart had stopped and I watched in horror as they revived my 1 day old baby boy.

I remember thinking this was the worst experience of my life. But the truth is nothing is worse than the hell I’m living now.

Back then, he was still here. He was still alive and I could rest my hand on his chest and his belly and feel the warmth of his skin. I could brush my fingers through his soft little hair. I could kiss his chubby cheeks, while avoiding tubes and wires that kept him alive.

I realize it’s selfish to wish him back in that hospital room and deep down, I’m glad he’s no longer suffering. But the hospital days don’t seem as horrific now, because those were the days he was alive. As hard as they were, if I could go back and relive them, even with the same outcome, I would do it in a heartbeat.

This time, I would never leave his side, not even for a moment. And instead of being afraid of what’s to come, I would soak up and enjoy every single second of life with Sterling.

You don’t need to be sorry for me. I’m still one of the lucky ones. This may not be how I imagined Sterling’s life, but I’m thankful he lived at all. I’m thankful for the hospital days and the time I had with him. I’m lucky to be his mama.

Marshmallow Fluff

I wrote a post on grief and mourning and then decided not to share those words today after all.

Then I picked a portion of something I wrote in my journal and decided not to share that either.

Then I chose a quote by Mary Shelley. Did you know she lost her one year old and her 3 year old? No wonder she wrote about monsters.

Anyway, I decided against every well thought out caption for this photo, because when I look at it, all I can think about are the comments that will flood in about how adorable and chubby he is.

Yes, he is adorable and chubby. But not this chubby. This wasn’t just precious baby chub, earned by a good latch, a suckling babe, and impressive milk supply.

This was water weight that he carried because his body wasn’t functioning well enough to flush it out. The day before this, he weighed 7lbs. In this moment, he weighed 9lbs.

He eventually was able to clear out the water weight, but I look at this photo and can’t help but feel jealous. Jealous and sad.

Jealous of these tubes that nourished my son, when it should’ve been me. I should’ve been able to take the credit for his chubbiness- for real, chunky rolls that would eventually appear instead of this artificial marshmallow fluff that appeared overnight and would vanish the next day.

And sad, that he couldn’t fully heal so I could bring him home to continue our breastfeeding relationship, to help him grow with nothing but my own body.

So, here we are. No pretty, edited words to express where I’m at today. Just the incoherent ramblings of a grieving mother. Or to put it more eloquently, word vomit.

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.

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.

Mommy Minus One

I felt ready to come back to our mommy group today. Honestly, if I didn’t, I would have honored that and stayed home.

It’s important that we, as grieving parents, honor every emotion and every feeling as it comes up. This is a healthy way to mourn, by showing ourselves grace and giving ourselves the space to mourn when we want, the way we want. (Don’t worry. I have plenty of unhealthy grieving habits too.)

I was excited to see my mama friends today. But when I pulled into the parking lot, the weight of our reality hit me so hard.

Wait a minute. I’m supposed to be unloading 5 kids right now. I’m supposed to be wrapping a 2 month old baby Sterling up to my body before heading in.

I wept into a napkin from the glove compartment, as my 3 oldest kids unbuckled their seatbelts and crowded around me.

“I’m sorry, guys” was all that would come out in a whisper. They all laid their hands on me and my oldest and very wise 6 year old, Cadence, rested her head on my shoulder.

“It’s okay to cry about Sterling,” she assured. We sat here for almost 20 minutes, before I pulled myself together and dropped the kids off to their classes.

Then I got to my table and I couldn’t stop the tears from flowing as I hugged the other mamas.

I’m supposed to be introducing him to my friends today. And instead, I arrive empty handed.

I did end up having a great time. I enjoyed being around friendly, familiar faces.

But loss just hovers over every little thing we do. Life will never be the same for any of us. And as sad as this is, I still wouldn’t change it. I would willingly choose every second of pain, every moment of heartache, every tear that is shed to have Sterling for the 6 days he lived.

Time Doesn’t Heal – 2 months down

“Time heals,” they say. Well, they’re wrong.

I keep waiting to feel a tiny bit better, for time to make it a bit easier. But the further away we get from December, the more it hurts.

62 days since I held you, since I last kissed your face.

Right now, it feels impossible to survive, like I will literally die from a broken heart.

Sometimes, I can wrap these words up in hope. Wrap this grief up in a neat little package and tie it with a bow, with the promise of heaven. I know we’re one day closer to heaven. I get it. And I’m grateful for it.

But there are moments when the darkness swallows me whole and the best I can do is just to feel. To give myself a break from searching for silver linings and just allow myself to hurt. So, I’ll sit here in this grief until I’m ready. And when I am, I will muster up every bit of strength I have and crawl back into the light.

2 months since I kissed you goodbye and I am hurting more than ever.

I love you, sweet boy.

Questions.

Today has been a rough one.

Sometimes, I just want to pour out all my feelings, but it’s hard and scary. I don’t know, at this point, what’s too much too share. I don’t want to make anyone sad or come across like I’m fishing for pity. That’s just not my heart, not my intent.

However, I would be doing the baby loss community a disservice if I only shared the beautiful, without the horrible, grief stricken moments. I think of the other baby loss families who have found our story. It wouldn’t be fair if I only shared encouraging words and left out all the heart wrenching, painful moments. That would be isolating.

So here’s where I’m at today- I’m angry. I’m confused. How is this my life? Why did Sterling have a spontaneous mutation that caused his disorder?

Just the shittiest luck. A total freak situation. But why? Why do people have deadly random mutations at all? Why couldn’t the doctors figure it out in time to save him?

I have so many questions that won’t be answered this side of heaven and I’m learning how to be okay with that. But for now, I’m not okay. 

💔