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.

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.

Blanket Sniffing

Dear Sterling,

It is a hard day. I am overcome with grief. I can’t move. I can’t speak. I can barely breathe. I can only sit and wish you were here. So I gather your things and climb back into bed. Your sloth. Your little woobie. Your blankets.

Three little blankets that tell the entire story of your life. One you were wrapped in right after you were born. The next you were swaddled in during our one day at home. Lastly, the one you were wearing when you died.

I hold your things tightly up against my chest, wishing it were you instead. Desperately trying to soothe the burning hole that aches for you, I press them into me.

You should be here.

I find myself anxiously searching for your leftover scent that might be still lingering in the fabric. If I’m lucky, I’ll find it.

I sniff the elephant blanket, the blanket the midwife gave us and wrapped you up in a couple hours after your entrance into the world. This is the one that held onto your smell the longest, but I’m afraid that time is up.

I sniff the one you died in, but that one mostly just smells like the hospital. Not what I was looking for, but still enough visceral memory attached to that hospital room scent that brings me a little closer to you.

And finally, the one I swaddled you in the morning after your birth. After a night of snuggles and breastfeeding, after I dressed you in your one little outfit. The one I unswaddled from around you, going against Daddy’s warnings of disturbing a sleeping baby, so I could snap photos of you to share with the world.

And thank God I did because if I hadn’t, I wouldn’t have my favorite picture of you. The photo that sits as my phone screen wallpaper and is framed and hung on our wall.  The same photo that I used for your birth announcement and on the cover of your funeral programs.

I sniff and sniff until suddenly, I breathe in a familiar newborn fragrance, sweet and subtle, that warms me to my core. And just like that, I find you.

“Oh, there you are, son. Hi baby. I love you.”