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.

To my Husband,

I remember a moment when things got rough in the NICU.

It was clear we most likely wouldn’t be bringing our boy home. You grabbed my hand and told me this would be the hardest thing we’d ever have to endure together. You were right.

You told me we were strong enough to make it. You were right.

Life is hard. No one gets through it unscathed. While I never imagined this would be a part of our story, I wouldn’t choose anyone else to do life with- the good, the bad, the ugly, the downright horrific.

Thank you for being you, love of my life, my baby daddy, and my best friend. I love you, Randy!

I wonder

You would have been 3 months old today. And it hit me last night that this is all I know.

No stats, no milestones, no chance to see your personality come alive.

I don’t get to be amazed by the rate you’re growing or hear first laughs and giggles.

I never even got to see you smile.

No first foods or first steps or scrubbing walls where you’ve left scribbles.

No first day of school or first date, first car or first job.

No wedding day, no grandbabies, no chance to see you become a man.

All those dreams, gone. They died along with you.

And now all I have left is to wonder.

Drowning

Dear Sterling,

You died one month ago today. Sometimes it feels like yesterday, but most of the time, I just wonder how we’ve all survived this long without you. 

Time crawls by so slow, it feels like I’ve already lived a lifetime without you.  This moment was one of the most excruciating, but still somehow incredibly peaceful. You were gone.

Your physical body was here with me, but you had already crossed over into paradise. There was no amount of time that would’ve been long enough. I knew no matter how long I chose to spend holding your little body, it would just never be enough.

Even with all the pain this moment brought me, I would give anything to go back to this moment. Even just for a minute, to feel the weight of you on my chest again.

They say grief comes in waves.  Right now, I’m drowning.

I love you, forever and ever.

1 Month old

Darling baby,

You would’ve been 1 month old today. 

💙

  We would’ve been sitting on the couch right now, you asleep on me, probably freshly bathed and nursed. 

I would’ve been composing some sort of 1 month post with all your baby milestones. 

The other kids would be getting ready for bed and coming to kiss you goodnight a hundred times.  They would probably wake you up and make you all cranky and I would laugh because you’re all so adorable. 

I wonder if these thoughts ever stop.  Or will I always wonder what we’d be doing if you were still here? 

It’s only been 25 days and I’m not sure how we’re supposed to do life without you.

Little Hero

Dear Sterling, 

A piece of my heart went to heaven.  Pieces of yours live on.

Two children each received a heart valve from you and even though we didn’t get the miracle we were looking for, 2 other families will because of you.

Thank you for the gifts you’ve given, my sweet, little hero.  I am so proud of you. I love you.

Blue Christmas

Dear Sterling,

This isn’t how I pictured spending my December.  It’s 2 days before Christmas and instead of reveling in the magic of the newborn stage, we had your funeral.  After you were born, we had one day with you.  One glorious, perfect day before everything changed.  Then we spent the next 5 days in hospitals with you hooked up to monitors and machines, not knowing if you would make it another day. 

Your daddy and I have seen things no parent should have to see.  But here’s the thing, son- we were never alone.  Emmanuel. God with us.  He was with us the entire time and He has given us everything we need to survive this, gifts that only He could provide.

Strength- as we walked through hospital hallways and looked into your doctor’s eyes when the words they spoke were every parent’s worst nightmare. 

Peace- as we watched you take your final breath and slip away from us, into the arms of Jesus. 

Joy- to get out of bed every morning, to carry on for your siblings and create memories with them this holiday season. 

Faith- to know that even when we don’t understand, we can trust in the Lord’s plan and know that He works all things together for good according to His purpose.

 Comfort- in our darkest moments, when the pain is so unbearable, we can physically feel it in our chests and stomachs. 

Love- His tender mercies that have been sprinkled all around us throughout this entire journey, often times through the kindness of others. 

And finally, Hope- the hope we have in Jesus and the promise of heaven. 

This Christmas, in the midst of heartbreak, I still have a reason to celebrate.  This isn’t how I pictured spending my December, with you in heaven on your first Christmas, but still, I rejoice.  I celebrate that baby in the manger, the man on the cross, and the hope we have because of Him. 

Thank you for opening my eyes to this, sweet boy.  This is, perhaps, the greatest gift you’ve given me through your life and death. I will see you again, my darling boy.  I love you forever.

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.