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.

Homesick

Dear Sterling,

It’s hard to be here, sometimes. At home.

Yes, its where you were born. It’s where you lived for one whole day before the hospital days.

But when I’m here, all I see are the empty spaces where you should be.

I see the holes where your cosleeper should be, where stacks of tiny diapers should’ve been stored.

I feel a physical pain, a burning hole in my chest that radiates down throughout my arms and reaches my fingertips. My entire body just aches for you.

I yearn for you constantly. My mind, body, and soul are so aware of your absence.

I see glimpses of you all around this place. It’s as if my mind etches you into the places you would be if you were here, because it knows I just can’t bear to live without you..

They say home is where the heart is, but a part of my heart died along with you and I’m left learning how to live this way.

I will never be whole here. I will never be at home here. There is no home for us without you in it.

Haters

Oh, the grieving mother. She can’t do anything right, can she?

If she grieves publicly, then she’s doing it for attention. Yet, if she doesn’t say any anything out loud, she isn’t grieving her baby.

If she talks about the one she’s lost, then she isn’t caring for her living children. But if she gives her living children attention, then she isn’t mourning the one she’s lost.

If she is having a hard time, then she is stuck in her grief and needs to move on, yet if she gets out of bed and lives her life, she is moving forward too quickly. 

And God forbid she ever smile or laugh or feel any joy at all after her loss, because that must mean she doesn’t love her dead baby.

The grieving mother can’t do anything without being met with judgement. With comments that echo, “If my baby died, I would _____” or “I wouldn’t _____” But the people who say these things don’t really know, do they?

The people who say these things are always those who haven’t come close to what the bereaved mother has experienced. They haven’t had to watch their child suffer in the hospital and fight for their life. Or hold their dying baby while their tiny body turns blue in their arms. Or go to check on their babes, only to find them cold and lifeless in their beds. Or have the promise of life be ripped from their grasp as they deliver a silent, still baby.

If you knew, if you really knew, your views would be different. Your judgement would melt away and you would know that the grieving mother doesn’t need your advice, but a little bit of grace and a whole lot of love and compassion. And remember, however you choose to proceed and whatever you decide to say about the grieving mother says a lot more about you and your character than it does about her.

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.

Grief VS Mourning

A few weeks after Sterling died, I read a psychologist’s explanation of the difference between grief and mourning. I’ll do my best to explain it. It goes something like this:

Grief is the way you feel about losing your child. It’s the earth shattering, heart-wrenching, spirit crushing pain that you are now tasked to live with for the rest of your life. The kind of unimaginable pain that no words are ever strong enough to describe and that no parent is sure they’ll be able to survive.

Mourning is the outward expression of grief. The way your tears are the first thing you see in the morning and the last thing you see at night. The way you stay cooped up inside your house, unable to move because even the effort it takes to breathe is too overwhelming.

I used to use the words interchangeably. But this text completely changed my view and soothed me immensely. Before, I thought it would be this bad forever and that was a horrible thought. Will I really spend the rest of my life in this much agony? Will I really go to bed every night shocked and grateful that we survived another day? Only to wake up every morning distressed and dreading that I would have to do it all over again?

Then again, I truly didn’t want this to get easier. The thought of that was even worse. It wouldn’t be right. Sterling deserves to be grieved intensely. Like every other child gone too soon, he’s too precious, important, and too loved for me to be anything other than completely destroyed by his loss.

But when I learned to separate grief and mourning, it brought me peace and hope.

Grief is unending and unchanging. The pain of this loss will never get any easier. I will carry it with me, wherever I go, every second of every day, until the day that I die and am reunited with my son. But the mourning process? THAT is what changes. Of course, I will mourn him every single day, but the way I mourn won’t always be this bleak. It will one day become a little lighter to carry, at least on some days. I haven’t quite made it to that point, but I know there are brighter days ahead. And the best part is- every day that passes is another day closer to heaven.

Naptime

Dear Sterling,

It’s naptime now. Ever is sleeping in her crib. Oliver is having trouble falling asleep. I lay beside him in his bed, stroking his dark hair, amazed at how much he resembles you.

Oliver rolls his Lego Spiderman between his hands. I wonder if you would’ve liked Spiderman and Lego too.

Oliver points out the light that makes its way past blackout curtains and illuminates an empty spot on the floor. A void where your crib would’ve gone. The crib isn’t here and neither are you. My heart breaks a little more.

Oliver sees through my strong exterior and places his hand on my face, sensing the shift in my mood. He runs his fingers through my hair and tells me it’s beautiful.

“I like purple,” he says. I wonder if you would’ve liked it too and what kinds of things you would’ve said to melt me the same way Ollie does.

I tell Oliver to close his eyes and think of the best day and maybe he will go there in his dreams. He closes his eyes.

“The beach,” he says, eyes still closed with a smile on his face.

I wonder if I’m the only one who spends every second thinking of you. The thought makes me sad.

“The beach,” he says again, his smile widening, “…and we could pick up Sterling from heaven and take him with us.”

We are always thinking of you, darling baby.

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.

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.

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.