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.

Life with Sterling

TW: baby seizure, EEG.

December 10th, 2019

We were airlifted to CHLA in the morning and by the evening, Sterling was having a seizure every few minutes.

This was during an overnight EEG to monitor seizure activity. He had a monitor at the end of the bed and a camera recording him. I stood next to him and pressed a button whenever I saw a seizure. This would mark the place in the video so the Neurologist go back and see where his seizures might be.

I remember feeling sad when I first saw his little head all wrapped up like this. I remember taking this photo, thinking I would never share it or even go back to see it, but now, I’m just so thankful I have photos of him at all. I wish I had more- more videos, more photos, more time.

It’s easy for me to look past all the tubes and wires and wraps and just see my son. My sweet, little baby. It’s not exactly your typical photo of a swaddled newborn with a soft, cloth baby beanie on his head. But this was life with Sterling and I’m grateful for every minute of it.

I’m so proud of you, son. You’re absolutely beautiful. And I like your fancy ‘snow beanie’ you have there. Miss you so, so much, darling baby.

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.

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.

Gone

As much as I wish I could be reporting a miracle, I have devastating news.  Our beautiful Sterling was ushered into heaven last night, while being snuggled in his daddy’s arms. This has been the most excruciating pain we’ve ever felt, but we also feel the Lord’s presence, His hand holding us together, and His strength, peace and comfort. 

Precious Sterling was born with a rare metabolic disorder that shut down his entire little system.  We’ll never understand why we were chosen to walk this road, but we trust in God’s plan for our lives and for Sterling’s little life.  It was short, but impacted many. Thank you for all your support, love and prayers.  We wouldn’t have been able to go through this without you guys by our side and we love you all.


I love you, sweet boy.  I’m so sorry for all the doctors, pricks, pokes, tubes, tests and scans. It killed us to see you that way, but truly, you’re a lucky boy.  You had a fast pass to heaven and now I know you’re at peace. No more pain, just peace.  Daddy and I will be here taking care of your sisters and brother, but we will be thinking about you every second of every day until we go home to be with you.  The Lord sent us an angel for Christmas and although it has been the hardest thing I’ve ever done to have to give you back, my son, I wouldn’t change having you for the world.

  Thank you for the 6 days we had with you.  I love being your mama, Sterling.

Silversmith

We are truly feeling the love and support and we are so grateful for all of you and your prayers.  I don’t have much of an update, but I wanted to let you know that our darling Sterling is currently stable and has been all day. 

I’m going to share a message that was sent to us today from one of our dearest friends:

“You know, the thing about Sterling silver, it’s put through a refining process that puts it through strong heat mixing, turmoil; impurities are taken out, at which point it becomes flawless. A mirror like finish to reflect the silversmith.”

I don’t know why this is happening, but I know God is good.  No matter what, He is good.  I know that He loves Sterling more than we ever could.  We are feeling the heat of the fire.  But I trust the Silversmith.


Thank you for continued prayers.