Before I Start
I have gone back and forth about how much of our story to put out in public, because once you share something like this, it is out there for good. I am sharing it anyway. Here is why.
I am not telling this story so people will feel sorry for us. I am telling it because this is where the strength in "Baked with Love and Purpose, Inspired by Strength" actually comes from. Every family carries a story. Every story means something. If ours helps even one person feel less alone, or helps one family learn the word Moyamoya sooner than we did, then putting it out here will have been worth it.
Born Fighting
Our son was born two months early, at 32 weeks, after a pregnancy with no complications at all. Because nothing had gone wrong, nothing about that day was supposed to go wrong either.
I remember the nurse's face right before he was born more clearly than almost anything else from that day. She had a worried look, the kind that tells you something is wrong before anyone says a word. With the last push I pushed as hard as I could. He came out face up, sunny side up as I have always called it, which makes an already hard job harder for everybody.
Everybody knows how that moment is supposed to go. You see it in every movie. The baby cries. Everybody smiles. You hold your child for the first time. We did not get that moment. Our son died on the table that day. A whole team of people brought him back to life while I laid there not even knowing it had happened.
As they carried him past me on the way out, somebody paused just long enough to ask, "Oh, you want to see your baby?" I got one quick look at him. Then he was gone, rushed off to the NICU.
My husband waited weeks to tell me that our son had to be brought back that day. He knew the moment itself had already given me more than I could hold, so he carried that piece of it alone until I was strong enough to hear it. That is who he is. He was my rock that day. He is still my rock now. Between the stress of the birth and the news that our newborn son, our very first child, was going to need surgery, I was so wrung out that I gave myself a nosebleed just trying to take it all in.
Our son was born with a diaphragmatic hernia, which is a hole in the diaphragm, the muscle that helps a baby breathe. Because of that hole, things that belonged in his belly had room to move up where they did not belong. Breathing was even harder for him than it already was. He was one week old when surgeons operated to fix it.
He weighed 3 pounds 14 ounces. He spent about two months in the NICU hooked up to just about everything. Breathing on his own was hard, so he stayed on oxygen. Latching on to a bottle was hard too, so he was fed through a feeding tube. We spent that Christmas in the NICU with him. I stayed at the Ronald McDonald House so I could be close by at all hours.
Home With an Oxygen Tank
Coming home did not mean traveling light. Our son came home on oxygen, so wherever he went, an oxygen tank went too, along with a pulse ox machine that kept track of the oxygen in his blood, his car seat and his diaper bag. He kept seeing a pulmonologist for his lungs. Once we settled into a routine at home, we finally got stretches of time where we could simply enjoy being first time parents to a baby boy who had already survived more than most people do in a lifetime.
Most of his appointments were mine to handle, because my husband was the only one working. I would carry our son in his car seat in one hand, his diaper bag over my shoulder, his oxygen tank and his pulse ox in tow. That was just a normal day for us. One day my husband was able to come along. Partway through the appointment, he asked me if that was really what I did every single time. I chuckled and told him yes. What else was I supposed to do?
Within that same week, he bought me a stroller that the car seat clicks right into, with storage underneath for all the equipment. The next appointment day felt downright magical. Haha. It sounds small. Maybe it was. But in that season, small things were the big things.
Six Months Old
At six months old, our son got sick. He was throwing up and just not himself in a way I could feel in my gut. He cried constantly. Nothing I tried would console him, so I carried him around the house most of the day because being held came closest to helping.
When my husband got home from work, I told him I was going to take a quick shower, since I had not had one all day. After that, we would take our son to the doctor. I had barely finished when I heard my husband call my name in a voice that stopped me cold. Our son was unresponsive, he said.
I did not understand what he meant at first. Unresponsive how? Our baby would not look at us. His eyes had glazed over, fixed in one direction. His little body was twitching in a way that turned my blood cold.
We called 911 right away. The dispatcher stayed on the line and walked us through what to do until help could reach us. We laid our son on the floor and checked his breathing the way they told us to. He was breathing, but barely. We turned his oxygen up a little while we waited. The ambulance reached our home in about fifteen minutes. It felt like hours.
I rode in the back of that ambulance with our son while my husband followed behind us in the car. At the hospital, everything exploded into motion at once. Test after test. Scan after scan. Everybody moving fast around one very small boy.
The Seizures
After hours of tests and questions, a doctor finally came in with an answer. Our son was having seizures. Some of them were grand mal seizures, the big kind that take over the whole body. Others were happening quietly, with no outward sign at all. The only reason anyone knew was an EEG. An EEG records the brain's activity, so it can catch seizures that no one can see from the outside looking in.
It took three different seizure medicines at high doses to get them stopped. I do not have fancy words for what it felt like to watch our son lay there motionless, completely beyond our help. It was the worst thing in the world. Our hearts were just broken.
What the doctors never could give us was a reason. They ran test after test looking for the cause of the seizures. Every door they opened led to another question. They did a spinal tap to check the fluid around his brain and spine. His screams from that day still haunt me. They ran genetic testing, hoping the answer might be written somewhere in his DNA. For a while they even considered toxoplasmosis, an infection that can come from cats, which mattered because we had two cats at home. In the end, nothing ever turned up as the culprit. We had to learn to live inside a question mark.
Starting Over
That hospital stay lasted about two months. By the end of it, our son had to relearn everything, as if he were a newborn all over again. He began speech therapy, occupational therapy and physical therapy, rebuilding his little life one skill at a time.
The staff there were amazing with us. They answered every question I asked, even the ones I asked a thousand times. They never once made me feel foolish for asking. Family and friends came and sat with him so I could step away and try to rest. I want to be honest about that word "try." There is no real break when your child is in the hospital. The worry and the fear sit right there with you wherever you go.
The bright spot in that whole stay was that our son came off the oxygen for good. The harder part was the feeding tube, because that came home with us.
Overnight, I became his personal nurse, with no medical background and a baby whose life partly depended on my getting one specific task right. I had to learn to place the feeding tube myself. I will not dress it up: if that tube lands in the wrong place, it can reach a lung instead of the stomach. A feeding can drown the very child you are trying to feed. I did it scared, carefully, every time, because he needed it and there was no one else standing there to do it.
His therapists came to our house in those months. They were every bit as wonderful as the hospital staff. They did not just work with him and leave. They taught us the exercises and the little everyday things we could do between visits to keep him moving forward.
Finding His Voice
Once he was home, our biggest daily battle was communication. Our son had things he wanted and feelings he needed us to understand. For a while he had no way to get any of it out. He would get frustrated. If I am honest, so would I, because neither of us could understand what the other was trying to say.
We found our way through with sign language and pictures. Those simple tools gave him back a voice while his spoken one was still on its way. Little by little, his strength came back. His voice came back with it. Our house got louder in the best possible way.
We still had a calendar full of doctor appointments. He was still taking three different seizure medicines every day. And because life does not wait for a calm season, it was right in the middle of all of that, just after we got home from the hospital, that I found out I was pregnant with our other son.
The Seizures End and a Later Scare
Fast forward with me a little. Our son had his last seizure a couple of days after his second birthday. By the grace of God, they have never come back. Thank the Lord for that, because not every family gets that sentence in their story. We do not take it lightly.
A few years later, our son got sick again, throwing up and feeling unwell. With a medical history like his, we do not treat sickness casually in this house. We rushed him to the hospital and told the doctors his whole history. They ran a few tests.
I will not name that hospital here, because I do not bash people or places. That is not what this story is for. They were busy that night, truly busy. Our son's case was not taken the way we felt it should have been. We were told we had to leave so the room could go to other children who needed it.
Our family has always believed that a scan that night might have caught what was coming and found the Moyamoya sooner. We also know we can never prove that. Both of those things have to be allowed to be true at the same time. What I know for sure is the lesson that night burned into me. It is the one thing I would hand to any parent, spouse or friend reading this: ADVOCATE. Advocate for yourself, for your child or for someone you love, even when it is uncomfortable and even when the room is busy. You know your people. Speak up for them. It could make a difference.
The Night Before
The night before the stroke, we were all sitting around the dinner table. Our son was not eating much and we were trying to get him to eat something, anything. I was asking the boys what they wanted to be for Halloween and how school was going. Just regular dinner table talk on a regular night.
Then our son seemed confused. His hands were not working the way they should. It stopped us cold. We checked him over and asked him some questions, the way you do when your gut is telling you something is off. And then, almost as fast as it came on, it was gone. He was back to normal. We let ourselves believe it had been nothing.
We could not have known it then, but looking back, that was the warning. It passed so quickly that it was easy to explain away. I think about that dinner now, how close we were to everything changing and none of us knew. The signs do not always arrive loud. Sometimes they sit down at your dinner table, stay just a minute and leave you wondering if you imagined them.
The Day We Heard the Word Moyamoya
The day this angiogram was taken, our lives changed forever. You have probably seen this image without knowing it, because a scan of it lives in the background of our bakery logo. Here is the day it came from.
Our son had been sick for days and could barely keep anything down. We assumed it was a stomach bug that would pass, so we pushed fluids and kept him home from school. He spent the day at my mom's house while we were at work. We had already planned on him staying home that day and my husband told me to make sure my mom knew: if our son started acting strange or if he got any worse, she was to call us right away. Around nine that morning, she called me. Her voice told me to move before her words did. He was acting strange, she said. He was tearing apart a paper towel, turning the sink knobs on and off, just not himself at all.
When I got to my mom's house and saw him, I knew in my bones that something was very wrong. I called my husband. Together we rushed our son to the hospital, where he sat stiff and silent in the car with a death grip on the headrest that he would not let go of for anything. He would not answer our questions. When we reached the hospital, he passed out for a few seconds during the pre-check.
They took him straight back for a CT scan. The nurses kept asking me whether he had hit his head or gotten hurt at school. I said no so many times that I finally asked them why they kept asking. That is when they told me they believed he might have a brain bleed. Our hearts just sank through the floor.
Our son was in terrible pain. There is nothing in this world like hearing your child scream for help you cannot give him. We asked for something for his pain again and again before a doctor finally gave him medicine that helped.
From that hospital, we were airlifted to a children's hospital. It was there, after still more testing, that a neurologist finally gave our nightmare a name. Our son had suffered a stroke. The stroke had been caused by a rare disease called Moyamoya.
If you have never heard of Moyamoya, you are standing exactly where we stood that day. It is a rare condition. It is also progressive, which means it does not stay still. The main arteries that carry blood to the brain narrow over time. Less and less blood gets through. The risk of stroke climbs, even for a child. The body fights back by growing a web of tiny new vessels around the narrowing. On an angiogram, those vessels look like a little puff of smoke. Moyamoya is a Japanese word that means puff of smoke. That is where the disease gets its name.
Our son was six years old. Six. I kept turning that over in my mind. How does a six year old have a stroke? How could this be happening to our child?
The stroke had hit his frontal lobe, the part of the brain that helps steer emotions, personality, judgment, decision making, problem solving and self control. He was different afterward. Anyone who loved him could see it. He was angry more often. He struggled in ways he never had before. We had to keep reminding ourselves that none of it was his fault. His brain had been injured. Healing was going to be its own long road.
The neurologist told us our son needed two brain surgeries. There is no cure for Moyamoya. Surgery is the main treatment there is, because it can help restore better blood flow to the brain. Without it, the disease keeps marching forward. The strokes keep coming. Moyamoya does not go away on its own. It gets worse.
My husband and I sat in our car for two hours after that conversation, crying and trying to wrap our minds around words we had never heard before that day. How do you decide something like that for your child, about a disease you did not know existed when you woke up that morning?
We went home and researched everything we could find. We weighed the pros and cons the way you weigh things when there is no good option, only a necessary one. We cried. We prayed. A few days later, we told the neurologist that we were ready. We would move forward with the surgeries.
He had his first surgery a few months after the diagnosis. His second surgery followed a few months after that. He was bedridden for a time afterward. He had to relearn the basics of being a kid all over again: how to eat, how to talk and how to walk. He went through physical therapy, speech therapy and occupational therapy. Therapy is still part of his life today. That stay lasted about two months. Just like the stays before it, family and friends showed up for us, taking turns sitting with him so we could step out and catch our breath. We were a wreck, to say the least. We were also held up by good people.
Why We Share
For a long time, I wrestled with the question every parent in our shoes wrestles with. Could I have done something different? Could I have prevented any of this? I know the answer now. The answer is no. There was nothing I did to cause it and nothing I missed that would have stopped it.
I also spent plenty of time asking why us. Why our child? He was innocent. He never should have had to endure what he has endured. I do not ask that as much anymore.
Here is what I know instead. Our son is a warrior. I do not say that because it looks good on paper. I say it because I have watched it be true every day since the day he was born. He has a purpose. His story has a purpose. The fact that he is still here with us is a testimony I will never stop being grateful for. No matter what the future holds, he will be loved unconditionally by this family. That part never changes.
Today, our son is doing so much better. We still have hard days. Challenges pop up now and then. I am not going to pretend otherwise. But I get to watch him grow. That is a gift I will never take for granted. He has been a fighter since birth. He is a survivor. He has the strength to overcome whatever obstacle shows up next.
So that is our purpose now. No family should have to walk through pain like this feeling alone, the way we did before we found our people and our footing. That is why awareness matters to us. That is why this little bakery carries the name it does.
Moya Coop and Confections is named for Moyamoya. Blue runs all through our brand because blue is the color of Moyamoya awareness. A portion of every purchase goes to help families affected by Moyamoya and to support awareness, because when you order from us, you are helping carry this story to the next family sitting in a hospital room, scared and searching for answers at two in the morning.
Our past is part of our story. It is not what defines us. It never will be.
If you have read this far, thank you. Thank you for knowing us a little better. Thank you for being part of a mission that means more to our family than I can fit into words. 💙
One last note from me: I am a mom sharing our family's story, not a medical professional. If anything here sounds familiar to your family, please talk with your own medical team.
Baked with Love and Purpose, Inspired by Strength
Come take a look at the shop: https://www.moyacoopandconfections.com/shop
Baked to order. Order by Monday at 11pm for pickup Thursday in Texarkana at the Old Kmart parking lot from 4:30 to 6pm or Friday in Redwater and Maud at the Spring Market parking lot from 5:30 to 7pm.
