The Stigma Around Special Needs

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 Orthinine Transcarbamylase deficiency.

Orthinine 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 special needs 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”. Special needs, 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 people with disabilities. 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.

When It Rains…

Once you’ve experienced unfathomable loss, it can be easy to feel like you’ve paid your dues. They say lightning never strikes twice. After all, we’re supposed to get rainbows after the storm, right? But what if your rainbow dies too?

It was six weeks after Sterling’s birth. Just six weeks. He hadn’t even been gone for very long when a familiar sickness creeped in. A second pink line would confirm what I had suspected.



At first, I didn’t believe it. It didn’t feel real. None of this felt real.
“I’m not ready!” I kept repeating over and over through sobs, while my husband held me and told me it would be okay.
“People will think we just moved onto the next! ‘Replacement baby’, they’ll say. And Sterling! Oh my gosh, what will he think? When he looks down, he has to know we’re grieving and we will never stop grieving. This is too soon.”

I felt so guilty. I needed time to mourn. I wasn’t ready for another baby. I just wanted Sterling. And then THAT made me feel guilty too. I felt guilty for needing time. And guilty for not being able to feel instant joy that those two pink lines used to bring me.

And more than anything, I was afraid. I knew I wanted this baby too, but I had been pregnant under great stress before and those pregnancies ended in loss. But this isn’t normal day to day stress, is it? This is grief. And that is unlike any other stress or anxiety I’ve ever felt. I knew my body wouldn’t be able to hold onto this one either. I just knew.

A few days later, the bleeding started. For 12 days, I bled. A blood test from my doctor confirmed my hormone levels were back at zero. I didn’t move from the couch for 3 days. I barely ate and barely spoke a word. The familiar pain in my back ached while whatever scraps that were left of my heart broke even more. I imagine it must be dust by now.

I used to be a life-giver. But now, it seems that everything that lives inside me lives briefly and then dies. Am I broken? Is this to be the end of the growth of our family? It just ends in death? Will I ever have (or do I even want) a rainbow? Can I even bear to have another child at this point, after all the guilt this brought me?
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Ever is a rainbow. She came after four early miscarriages that happened over the span of a year. I know the physical and emotional pain of a miscarriage and I know it well. But this last one, it felt like a twist of the knife. What now, life? Would you like to pour some salt in it too?

Now, we have more babies in heaven than we do on earth. I know I wasn’t ready to be pregnant again after such a heartbreaking loss, but I sure wasn’t ready to lose another one either.

Something that I’ve learned very quickly in my quest to raise awareness of Urea Cycle Disorders is that plenty of people just turn their face away. There are people who just don’t want to hear it, because “it would never happen” to them. You never think it will happen to you, until one day, it does.

I’m the type of person who goes the other way, entirely. I usually expect the worst. And this isn’t a healthy way to live, either. We can’t live our lives in fear, but we can face reality and prepare our hearts for when the storm will hit. The storm is inevitable and there is always more than one. What’s that quote? “You’re either going into a trial, going through a trial, or coming out of one.” It’s something like that. And it is true. Sure, it sounds bleak, but remember we DO have hope in heaven. That is what gets me through.

Life here is beautiful. Its full of great and wonderful things. It is also painful. I wish that once your heart breaks, that it would heal and remain in tact for the rest of your life. I wish there was some sort of max level of pain you could reach in your life, but it just doesn’t work that way.
Not for any of us. None of us are exempt from heartache, no matter how much we’ve already experienced. Grief is universal and we’ll all experiece it at one point in our life. It connects us. So, I guess I’ll open up my umbrella now, because you know what they say.
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When it rains…

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.

A Different Kind of Rainbow

Though sometimes small and often overlooked, there are miracles that occur every day.

My sister named her 2nd daughter Iris Sterling. She was given her middle name in honor and memory of my boy. But my sister chose the name Iris for her baby girl before knowing the meaning that it would hold for our family. The name Iris means rainbow.

I struggle with the term “rainbow baby”, because losing Sterling was not merely a storm. The pain of watching our newborn son die in our arms and having to live every day without him cannot be downplayed and described simply as a storm.

But still, I cannot deny its meaning and the hope it offers. Beauty rising from chaos. A breath of fresh air after sinking for so long. A light in a sea of darkness. A rainbow after a storm.

Just two months after Sterling was born and died, Iris made her way earth side. I know “rainbows” usually belong to the bereaved mother, but I don’t think its a coincidence that the first baby born into our family following our loss of Sterling was magically given a name with such meaning.

Iris is also the name of a goddess in Greek mythology, one who personifies rainbows. It is said that she connects heaven and earth with her rainbow. Two worlds linked together.

While my arms ache for Sterling, Iris is a reminder, not of my emptiness, but that heaven is closer than we think. And Sterling, he is all around us.

Iris Sterling, your worth is completely separate from our darling boy. But in this time of deep suffering and mourning, you bring so much joy. Rainbows appear when white sunlight is broken up by water droplets into a beautiful display of seven colors. And you are a light. Thank you for the messages of comfort you’ve given me.  You truly are a rainbow for our whole family.

Sticker to protect my niece’s privacy.

Five

“How many children do you have?”

Cue record scratch.

The most innocent question that suddenly leaves me feeling like I’ve been punched in the stomach.

I freeze for a second, like a deer facing headlights and my brain scrambles, searching for the right words.

To avoid pity and hollow platitudes, I could say four. But that doesn’t sit right with me. I’ve done that once before and it left me feeling sick and guilt ridden. After all, I do have five. Sterling will always be our #5. He deserves to be counted.

Now, I’ll always say five. There are days when I just can’t bear my Sterling being invisible, so I light up my phone screen and show off his photo. I say that he died at 6 days old but that our love for him lasts a lifetime and beyond. And sometimes, I just say five and leave it at that- unless I’m asked where the fifth one is, of course.

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.

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.

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.