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?
.
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…

“You’re pregnant, aren’t you?”

Months after having my third baby, Oliver, my doctor discovered a solid mass on my ovary. Luckily, it was small enough (about 4cm), that she wasn’t worried. She told me it would most likely vanish over time, but if it grew, we would talk about removing it. I went in every 3 months for ultrasounds to have it monitored. During my 4th pregnancy (with Ever), the pain just disappeared. I was sure the mass had dissolved, like the doctor thought it would. But about 6 months postpartum, a sharp, familiar pain returned in the same spot.

One year ago today, on April 24th, 2019, I went in for another ultrasound to determine the cause of the discomfort I had been feeling. The tech put on her gloves and sat down. She was sweet, with a genuine smile on her face and a head full of curls. Kindness radiated through her and I felt a sense of comfort, as if she were an old friend.

“Okay, you ready?” she asked. She placed the wand on my abdomen and observed. After a few minutes, she explained, “Good news! The mass is gone. Both your ovaries are clear. I just need to go back and check out your uterus. I’m seeing something.”

My heart sank. This is it, I thought. I’ve lived a good life without too much tragedy, so something was bound to happen eventually. I braced myself, imagining what it could possibly be that she was seeing and how my life might change. 

“When did you say your last period was?” she asked, while cocking her head to the side. 

“About a week ago”, I replied nervously.

“Was it normal?”, she asked looking confused.

“No, actually, it was really light.” To be frank, I had assumed I wasn’t ovulating because it was a stressful month.

“Huh. Okay, well see that little ring right there?”, she pointed to the screen. “That’s a yolk sac. And that little grain of rice is the baby. You’re 6 weeks pregnant.” 

It was too early to hear a heartbeat, but she pointed to the screen and showed me the life that flickered inside me. She explained that the pain I had been feeling was a corpus luteum cyst that appears after ovulation and looks like a ring of fire. And that the flickering meant the baby is alive.I was speechless.

I thought we might end up having a 5th someday, but my husband and I were content with where we were at. We were just enjoying our four and were definitely not ready to try for another. But believe me, I know how privileged we are to have surprise babies so I couldn’t help but feel joyful and lucky.

Once the shock wore off, happiness engulfed me and I just started giggling. And there I sat, with a complete stranger, while we just laughed and laughed together.

 “This has never happened to me before! I’ve never found a surprise baby! I’m excited!” she exclaimed, sharing in my joy. Boy, was I excited too. This had never happened to me before either. I usually know right away when I’m pregnant. Hyperemesis Gravidarum rears is ugly head and I’m vomiting before I even test positive. I always confirm my suspicions and that second pink line pops up early at just 3 weeks along. But this time, there were no signs. This little guy decided to sneak in there, undetected for a few weeks.

I was ready to leave and the tech held the door open for me. I walked through, then turned back to say goodbye. Simultaneously, we wrapped our arms around each other and hugged like we were sisters.

“Congratulations!” she whispered in my ear. To this day, I remember her smile. I will never forget her.

I walked to the car and my heart started pounding. I was terrified to tell my husband. Would he be mad? Excited? Scared? I didn’t know what to expect. I shot him a text that read: Brace yourself. I have news. He called me immediately. First, he asked if I was okay.  When I told him I was okay, he knew instantly.

“You’re pregnant, aren’t you?” 

“….yes.”

The other side of the phone went quiet. I drove home, call still connected, in silence. My mind raced. Five kids. Five freaking kids. That is a lot of kids. Four kids is kind of a lot, but it’s totally doable. But FIVE?! What if I can’t handle this?

When I walked through the door, I was met with a big, bear hug from the man of my dreams and we both just broke out into laughter. He laughed. I laughed and cried. Without me saying a word, he spoke.

“We’re good at what we do. We can handle one more.” The peace in his voice spilled over me and all my fears melted away.

And that was the last time I doubted my strength as a mother.

I would give anything to be writing this with my 4 month old baby boy asleep on my chest, but our precious baby died just 6 days after he was born. I often think back to the day I learned of his existence. I think of all the laughter and bliss he brought us, just from knowing he was growing in my womb. I wonder how different my life would’ve been if we had never got our 5th baby, if my life never would’ve been touched by such deep loss and heartache.

But that is a life I would no longer want, because it would mean I wouldn’t have had him at all. All the pain of losing him was worth the joy and love he gave us.

Our Sterling died from a rare metabolic disorder that we didn’t know he had until it was too late. But that, my friend, is another story for another time.

Screenshot of me (before the purple hair dye) telling my mom and sister the exciting news the following day.

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!

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.

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.

You Would’ve Been…

f o u r  m o n t h s  o l d.

Dear Sterling,

I adore you, little one. My love for you knows no bounds and continues to grow with every passing day.

Another month passes and I find myself saying the same thing I always say. Today, you would have been.

I close my eyes and let myself imagine what you might’ve looked like, how big would’ve grown. I dream of the beauty in your smile and the magic in the sound of your laughter. I imagine what this moment would have been like if you were here and I yearn.

I long for that life, where I’d be doing my best to capture a photo of a wilde and wiggly 4 month old, as bright blue eyes catch glimmers of light and gleam brilliantly.

Instead, I open my eyes and it all disappears. Gone. Your whole life and all my dreams for you and our family is just ripped from my grasp and every time, it feels like the first time. It feels like I am losing you all over again.

I miss you so much, darling baby. And that is the understatement of the year.

I love you forever and ever. I love you. I love you. I love you. I love you.

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.

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.”