Losing a Child – Our Story

My son went to bed a normal boy. Excited that Santa was on his way. Hopeful that in the morning, he would find everything he wanted under the tree. He would have! I never would have guessed that 2 hours later, when he woke up sick, it would be the start of my worst nightmare.

Every waking moment I replay that night over and over in my mind.

He had a very low grade fever that afternoon (December 24th). I thought, “Figures we’d end up with a sick kid for the holiday”. About 3 PM he started complaining his ear hurt. Great, an ear infection! So we hurried to get him to urgent care before they closed at 6. My husband took him. Both ears were red and a little inflamed. He’d had a cough so they gave him a Z-pack.

They got home about 6:30. He had picked out Ginger Ale and cheese popcorn at Walgreens for a snack later. He really hadn’t eaten all day so they stopped and grabbed McDonald’s on the way home. Cameron was so excited that he got pancakes!

After dinner, his mood had perked up a bit. We took advantage and made our reindeer food. Reindeer have a very special place in our house, so we always make sure Santa’s reindeer have a special treat. Oatmeal and marshmallows for eating. Glitter added so they can see the sparkle and know where to land. We sprinkled it all through the front yard.

Reindeer Food

We had planned to do a webcam with my husband’s parents that evening. Let the kids open their gifts from them. I will never forget Cameron was mad at us! He didn’t want to open any presents early. He wanted to save them all for Christmas morning.

He gave in though, and I’m glad he did! The look of excitement on his face as he opened one of the video games he wanted. I wish I had been taking more pictures. He and Melia took turns opening Sienna’s presents. Then he asked if he could stay up and play his new game. I wish I had let him! It was already getting late, and we had so much to do before morning.

David joked that he would test the game out while Cameron slept tonight. Just to make sure it was going to work OK for him the next morning. Cameron asked if he could play in the morning before everyone else got up. I told him there was no way he was going to let us all sleep in on Christmas morning! He said it was OK. He wouldn’t bother us. We could sleep a little while. Then we’d open presents later. Right about 9 PM, Cameron announced he was tired and he was going to bed. Just like that. He picked up his games to take them with him, which made us chuckle. Off he went.

I didn’t get to tuck him in that night. He was asleep the moment his head hit the pillow.

We worked quickly that night to get Christmas ready. It was still early so we decided to watch a movie. I was trying to listen carefully for either of the big kids to get out of bed. I didn’t want them coming in to see the tree before morning.

It was 11 PM when I heard someone was up. Cameron was in his bathroom sick. I thought, “Great, that damn stomach bug is back.” The first words out of his mouth? “Has Santa been here yet?” I lied and told him no. I said it was still too early. As I cleaned up the bathroom, he jumped in the shower.

We got him settled on the couch. We were sitting at the table so we could be close. Every time he moved or made a sound, I would jump up to check on him and see if he was going to get sick. His fever had gone up to 101. We attempted Tylenol, but he couldn’t keep anything down.

By this time, it was almost 1 AM. I carried him into the bathroom. He was so tired and weak that he couldn’t walk on his own. I sat him down on the toilet and began cleaning him up. It was about this time that I noticed things began to be off. He had a couple of words that he began to slur. His response times were a little slower than usual. He told me everything was turning into legos. He couldn’t stand on his own so my husband had to hold him up in the shower.

My husband kept telling me that surely it was just because he was so tired. I knew he was, but it just didn’t make sense to me. He should have been able to rally more than he had. There was something more going on.

We got him settled back on the couch. Our watch resumed. I felt bad because every time he made a noise I would jump. Inevitably it would wake him up. He gave me a nasty look and said, “You just woke me up Mom. I was sleeping.”

He began asking for water because was so thirsty. We took his temperature. 103.5. It was time for the ER. We weren’t able to control his temperature. I was sure he was going to need an IV for medicine and fluids. It was 2:30 AM. My husband carried him to the car. We put him in the front seat with me. Got him buckled in. He held the bucket. On our way there he commented on the number of green lights we were hitting…how lucky we were. All I kept thinking was, we’d be OK once we got there.

Just as we were turning the corner into the ER, I asked him if we needed to take the bucket in with us. He said no. I asked him if he felt like he was going to be sick again. He said no. No sooner did he say it, he was throwing up again. I pulled up to the ER door, ran inside to grab a wheel chair, lifted him into it, and placed the bucket beside him. As I wheeled him in they took him right to the back to take his vitals. By the time I got back from parking the car, we were being wheeled back to a bed.

They again tried Tylenol. He still couldn’t keep it down. We started an IV. He barely flinched. In spite of the fluids, he kept asking for water because he was so thirsty. The tests began. First round of blood work. Chest X-rays. He had to sit on the side of his bed with me holding him up because he couldn’t do it on his own. I remember the technician asking me if he was always like this. I told her no. She agreed that he wasn’t acting normal, even given he was sick. She said she expected she’d be asked to bring him back for a CT scan next. She was right.

In the room, everyone that came in would ask him how he was feeling. He always responded with a weak, “Good.” I kept telling him that he needed to stop saying good. That he needed to tell us how he really felt so we could figure out what was wrong and fix it. He would then say, “I’m dizzy.” Nothing more.

The nurse brought him a little present. She told him he could open it now, or save it for when he felt a little better. He turned it around in his hands, inspecting it. He then told her he wanted to save it so he could open it on Christmas. She asked if he knew what day it was. We told him it was Christmas. It didn’t matter. He held onto that present.

He kept trying to fall asleep. It never lasted long. We had so many people in our room. It was a constant stream.

Test results started coming back. I don’t even know everything they were testing for. Most were normal. Some were a little strange. The medical mystery had begun.

It was about this time that I had my first feeling that he may not make it. I was so angry at myself for even thinking it. Refused to believe it. Kept saying we had to be close to figuring it out. Once we did, we’d be on the road to recovery.

The doctor came in and told me they wanted to admit him. We were going to be transported to Arnold Palmer Children’s Hospital. Our doctor was having regular conversations with their ICU doctor to make sure they were running the right tests and not missing anything. Our next test would be a spinal tap. In the middle of this conversation, Cameron sat up and asked me if I would help him. I asked what he needed. He asked if I would help buckle him. I said, “What?” He asked if I could help him get buckled in the car. I told him we weren’t in the car and asked if he knew where we were. He looked around and said yes…we were at the hospital. So I told him he didn’t need buckled. That he could just lay back and try to rest.

The doctor asked me if he had been doing this all night. I told him he had off and on.

As we waited, Cameron opened his eyes and looked at me. I will never forget the look in his eyes because it was nothing I had ever seen before! I asked him if he was OK. He said yes. I asked him if was scared. He said no. I said, “I love you.” He said, “I love you”. Then he closed his eyes. This was the last lucid moment I had with him! When I think about it, I really think he knew what was coming. This was his way of trying to make it OK for me.

By this time it was nearing 6 AM. Cameron had settled in and started to sleep a bit. I didn’t want to bother him. The doctor came in and we were preparing for the spinal tap. He attempted to wake Cameron and explain what we were going to do next. We couldn’t wake him. His eyes would open, but he would only stare off in the distance before closing again. The doctor and I both took turns shaking him, calling his name, trying anything to wake him. Nothing worked.

We were now being whisked into a larger room. There were at least a dozen doctors and nurses with us. Another IV was being started in his arm. He was being prepped for the spinal tap. My poor boy just lay lifeless on the bed. Like a little rag doll as they moved him around to the position they needed him in. I stood in the back of the room. Clear view to watch everything. Completely helpless.

It took forever for them to draw the fluid. Right after, I watched him seize a few times. A shift change had begun because we had new people coming into the room to get updates to take over. That was my mental realization it had to be around 7 AM. The ICU ambulance team had arrived from Arnold Palmer. They all kept telling me things were OK. His vitals were stable. He was “emergent”, but they were taking good care of him. The decision was made to intubate him for the ambulance ride. It was precautionary so that he didn’t stop breathing en route to the hospital. Again, it took forever!

I ran out to our car to leave some of our stuff. His clothes, minus the t-shirt they cut off of him. Our bucket.

As he as loaded into the back of the ambulance, the nurse that had been caring for us (Larissa) came to give me a hug. She told me she wanted me to bring him back to see her when this was all over and he was better. I promised I would. She had been amazing!

I had to ride in the front of the ambulance. The sound of sirens will never be the same!

losing a child

By the time we got to Arnold Palmer, things had changed. As I climbed out of the ambulance, I was being told we were going right to a CT scan. His pupils had stopped responding on the ride and they had to do a couple of things (not sure what). We were supposed to be going to a room in their step down unit. Now, we were headed to ICU.

When we arrived at the room, there were already a handful of nurses and doctors to meet us. They immediately began evaluating him. Getting him hooked up. Again, I was standing in the background watching. Analyzing faces. Praying.

The doctor had her back to me. She took out her cell phone and called to get the CT results. She told him she would text the number down and asked him to pull the results as fast as he could. She then handed the phone to someone else in the room. Told her he would be calling back and to answer when he did. It wasn’t but a few minutes. I will never forget the look in her eyes. Intense sadness. She handed the phone to the doctor. They exchanged looks. I heard the doctor say, “How bad is it?” as she stepped out into the hall.

When she came back she sat down with me at the back of the room for a minute. She explained that his CT scan looked really bad. His brain was so swollen it had started to expand into his spinal cavity. That she was very concerned about everything she was seeing. That she had called in a neurosurgeon consult to look at his scans and see if there is anything that can be done.

She was careful not to give me any hope. Only facts. She was careful only to share a small portion of what she knew at that moment. She then told me they were going to need to start a central line in his femoral artery. It needed to be done in a sterile environment so I would have to leave the room.

As we exited the room and began walking down the hall to a waiting area, I started crying. It was the first time I let myself cry or feel any emotion. I was immediately mad at myself. I needed to stay in control because if there was any chance in hell that boy would open his eyes again, I needed to be right there to reassure him it was OK. There was no way I could let him see me a mess.

I’m not sure how long I was out of the room. It was at this time that I knew my husband needed to get to the hospital. I began trying to track down child care. I had family telling me they had decided they were coming. At first, I told them not to. In my heart I knew if they were coming, it meant things were really bad. I just kept telling them to wait because we didn’t even have a diagnosis yet.

I paced the hallway. I kept telling myself to be patient. Everything they had done earlier took ten times longer than expected. This would too. I was anxious to get back into that room.

When the 2 doctors came down the hall, their faces were blank. I knew I was about to get the news every parent feared! We sat down in a conference room. They closed the door. She asked me if there was family they could call. I told her my husband was on his way, but I wasn’t sure how far away he was. She asked if I wanted her to wait, or she could come back and talk to him when he arrived. I just wanted the update.

She explained again the horrible CT results. She told me the neurosurgeon reviewed all of his tests (including the normal CT scan we’d had just 3 hours before it). There was nothing he could do. The swelling was far too great. His brain was so injured from stroke, swelling, and infection. The areas of his brain that were impacted greatest were those that controlled things he needed to live (heart rate, breathing, etc.). She explained that even if he came out of this, the parts of him that made him Cameron would all be gone. It wasn’t until I asked her what the odds were that he’d wake up that it really set in. She told me she didn’t expect him to make it.

In that moment, my heart broke! How am I supposed to accept that? How am I supposed to even think about life without this little boy. It wasn’t fair!

They told me I was allowed to go back to the room. I couldn’t get to him fast enough. He was being put into isolation because we still didn’t know the cause. Everyone that came into the room had to wear gowns, hats, and masks…except me. The tests continued so they could try and find answers.

When David arrived, I had to tell him the news. We cried. The doctor came back by and explained it all again.

This was the first time I stopped to think about the girls at home. Poor Melia was still waiting for us to get home from the hospital so we could open Christmas presents. We struggled with what to do. We knew we had family jumping on planes to get to us. We knew we needed to be able to tell Melia before anyone else arrived, emotional.

It was so hard to leave Cameron at the hospital, alone. The only reason we did is because we knew if he was standing there, he would tell us to leave him and go home to the girls. So we did. We made the 45 minute drive home. I had no idea what we were going to do until we pulled into the driveway. The moment I saw her, I started crying! She asked me what was wrong and gave me a big hug.

I decided it was best we tell her first. Then we could let her decide what to do about Christmas. I explained how sick Cameron was. That his brain was sick. That he was sleeping and the doctors told us he wasn’t going to be able to wake up. That he wasn’t going to be coming home. She tried to ignore what I was saying and asked to open presents. So we did. She loved the 1-on-1 attention. Told me she was glad it was just her, Daddy, and I. I tried hard not to cry.

Shortly after we finished unwrapping, we told her we had to go back to the hospital. She was OK with that because she was having so much fun with my friend Penny. Penny was a godsend giving up her Christmas plans to watch the girls!

The drive back to the hospital took forever! No real updates when we got back. The medical mystery just seemed to grow. All they could tell us was encephalitis. That it was possibly a virus. They said we all likely had it. For the rest of us, it was a cold. For him, it attacked his brain. I can’t tell you how many people told me they have never seen deterioration this fast! They also told us they would continue searching for answers so we could get closure and know the actual cause.

David held onto hope. That he would open his eyes. That we’d find something or they would be able to do something. I kept telling him not to go there. Not that I didn’t want to have hope, but I told him they pretty much told me there wasn’t hope. I just stood beside his bed and held his hand. I don’t think David really understood until they let me get in bed with Cameron. We had brought Reindeer (his favorite). I tucked Reindeer into Cameron’s arm. Then I laid beside him in bed.

I will never forget the cold of his forehead on my lips.

The tests continued. No answers. We were told the process of determining brain death. Our doctor would perform a series of tests (checking for pupil response, reflexes, etc.) These could only be started after he had been admitted for 12-hours. We then had to wait another 12-hours and have a second doctor complete the same tests, with the same outcome. It was all so surreal. She told us we could delay that process as long as we wanted, but it was in our hands.

By 8:30 PM, our immediate family had all arrived.

We asked the doctor to begin her first round of testing as soon as she could, which was 10 PM. David and I both felt like delaying it was the wrong thing to do. We knew what the outcome was going to be. It wasn’t fair to him that he be kept alive by all these machines any longer than was necessary. We even had medicine increasing his blood pressure. It had been increased several times through the day because his rate kept dropping.

At 10:10, the doctor came in for the first round of brain activity tests. We were told we could stay in the room if we wanted. I wasn’t leaving! David had a hard time with it. For me, it didn’t matter. He wasn’t going to be alone. So I stood at the foot of the bed. Results were as expected, he was brain dead.

It was at this time that we asked the doctor what we could do. We couldn’t stand the thought of waiting another 12-hours to do it again. We asked if we could stop increasing the heart meds. She told us that legally they had to perform the second test. However, she wanted to consult with some other doctors to see what we could do medically.

She was back within a few minutes. She told us as long as we had 3 attending doctor’s in the room, in agreement, that we could do it on our own terms. She said they had the 3rd doctor already in their car on the way to the hospital.

As soon as everyone was there, we were given forms to sign. Then we were told it was on our timetable. To just let them know when we were ready. I didn’t want to wait, so we asked them to begin.

Slowly they began decreasing his heart meds. I’m really not sure who was in the room with us. I just laid in bed with him and held him. I kept whispering that it was OK. That I loved him and would miss him so much. He and I had a lot of conversations about death, so we had talked a lot about what we would do when we got to heaven. He always said he would meet up with Max, our dog. Then he would wait for me if he got there first.

I remember consciously watching his chest. I wanted to see him take his last breath. It was something I never wanted to forget. Then I just held him.

He passed at 12:19 on December 26th. He waited. You see, Christmas is also my birthday. I believe he waited so that it didn’t happen on my birthday.

From that moment forward, it seems the question I keep asking myself is “What do I do now?” I’m not sure if that will ever change. It was so incredibly hard to leave the room that night. Leave the hospital. Knowing I was leaving him laying in that bed. It just felt so final.

This last week was the hardest of my life. How do you move on from losing a child? Every thing I do is done because I think, “What would Cameron want/do?”

My favorite boy is gone….I’m still waiting for answers.

Additional Posts Following Cameron’s Story:

  1. Cameron’s Memorial Balloon Launch
  2. Overwhelming Thank You
  3. Cameron’s First Balloon is Found
  4. Communication After Death – Signs From Cameron
  5. Our Story of Loss (Continued) – Guest Post From my Husband

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396 Comments on “Losing a Child – Our Story”

  1. Dear Emily, I cannot fathom the amount of courage and emotional strength it must have taken to share this heartbreaking story of the sudden, tragic loss of your little boy. You and your family are in my thoughts and prayers. May you find the answers you seek and the support you need.

    1. Thank you! It has been an unimaginable week. I keep wishing that I will wake up and find out it’s all a dream. I play this story over and over in my head. I think I’ve reached the point where I’m numb. Hoping by sharing it will help someone else. Regardless, I think it will help me to write about my journey and share about him.

      1. Been thru. My boy was “almost six” he would say. Plz contact me for an understanding shoulder. I live in Brevard county.

        1. Emily,

          I found this site searching for other parents going through the same nightmare that we have.

          On January 5, 2019, my 11 year old daughter died in a black ice car accident. I don’t know if there will ever be a day that I won’t struggle.

          I wish you the best that you can make it. Sometimes I feel if I just get up and shower I have accomplished something for the day. Other days I feel powerful to conquer a full day of errands, cleaning etc. We do have a 4 year old son also, which is our blessing to keep going. We have always been honest with him and open but he’s very to the point because of his age. He was in the vehicle as well without a scratch and so explaining was something that was not an option.

          Reading your post gives others some type of hope out of tragedy. Prayers from one grieving family to another.

          https://www.google.com/amp/s/www.wlwt.com/amp/article/community-says-goodbye-to-11-year-old-softball-standout-at-on-field-vigil/25864624

          Lindsay

      2. What a nightmare. I am so sorry. The way you wrote everything made it all very vivid and had myself and probably every other mother (probably some fathers too) in tears. Keep writing and praying and loving those around you.

      3. Hi Emily. I’m only 13 years old and I lost one of my good friends just hours after your boy passed. Unfortunately. We must stay strong and let God do what he feels is best. Some of his choices we don’t like (obviously) but life keeps moving and there’s nothing we can do about it but pray. My heart sank when I read your story cuz I know what it feels like to lose a loved one but not a son. You must be thinking about him 24/7. Just know that, he’s home now:)

        1. Wise words for a 13-year old! I’m sorry to hear about your friend. That’s a tough thing to go through too. Hang in there.

      4. I am so sorry, Emily. I am praying for your strength. I came on to share a Huffington Post I just wrote, which after reading your post seems so unimportant. In any case it’s on my twitter feed, @memekellytoday. It’s another letter to my three black sons. Peace and Blessing to you on this tough anniversary.

        1. Thank you so much for stopping by, reading, and taking the time to comment. I will check out your latest HuffPo article.

    2. I am so very sorry for your loss. I can’t imagine the pain you must be feeling at this very moment. I can only imagine that he’s with jesus right now and playing with max. He will be there to greet you once you pass over. For now I’m sure he would want you to carry on and remember the beautiful times you all shared together as a family. I know life will never be the same and I pray that god puts his loving arms around everyone in your family and brings you peace.

    3. I saw your story shared on facebook and felt compelled to comment. First, let me say I’m so sorry. I know those words are inadequate but know I am praying for your family. Without telling my entire story, my family shared a similar story. I could write it in detail like you have done. My nephew died the day after thanksgiving 2012. Black Friday has an entirely different meaning to us. Similar circumstances….was sick… A little sicker…and dying in a matter of hours. The memories of that day and the weeks to follow haunt me. Matthew died from sepsis from a MRSA infection in his blood that didn’t know was there. He had what was like flu symptoms and like your son couldn’t walk etc. A few hours later he was gone. We watched cpr a half dozen or more times. It’s been 3 years. And while it’s still painful and hard for my sister…life has not stopped for us all. Time keeps moving. Without matthew. If I can give you a little advice, delete the old texts. Dont read the horror over and over. I did. And it is like ripping a scab off of a bandaid. Also, my husband’s grandmother died this afternoon. Her birthday is christmas day. I don’t think it is a coincidence to read your story. Maybe she met your precious boy when she crossed the bridge. ❤️ Much love for your family!!

      1. So sorry to hear about your nephew and grandmother. I like to think Cameron’s new job in heaven is to greet the other little kids that are taken too soon. Giving extra special hugs to those that weren’t loved the way he was. I hope your family finds peace as well.

        1. When matthew died we all just wanted to know why!? Why did God take my sister’s child!? Why would He do that!? And although we still haven’t come to terms with it completely, the preacher helped when he said if God didn’t take children heaven would be full of old people. 🙂 I read all your comments and saw where you wrote ‘new normal’. That’s something we said as well. New normal sucks. But I will tell you my sister is surviving. And you will smile again. And laugh again. But you will always have that wound in your heart it just develops a scar and isn’t as fresh after time. I remember longing for a year or more to hurry up and pass. To get out of the ‘now’. And I will say time helps…but nothing heals. I am praying for your family. I’m so sorry this happened at Christmas for the sake of your other children. My sister has not celebrated thanksgiving since 2012. She says she never will again. Prayers for today…that you can rest and that you are surrounded by love and support.

          1. New normal does suck! However, I have already decided that we will continue to celebrate Cameron’s life. His birthday. I want every holiday to be a repeat of the one before…when he was here. He loved the holidays, especially Christmas. He would want us to continue doing the things he loved doing. But I understand your sister’s feeling. It’s just such a tough, personal thing.

      1. Emily,
        My husband and I have broken hearts for you and your family tonight as we just read your story. I am so very sorry for your loss. There are no words.
        I know that you do not know us, but I would like to do something. ..anything I can for you. Dinner, cleaning, a little extra money, ect. I work for Real Life Christian Academy. I can offer our amazing team of care counselors for grieving? I am praying fervently for you and your precious family. Please let me know if there is anything at all my family can do for yours. God bless you!

  2. Emily,

    My heart is completely broken for you. I cannot even begin to imagine your pain and I am so incredibly sorry for your loss. Yoy are in my thoughts and prayers.

  3. Words can’t express how sad we all were to hear about your sweet boy. I can’t even imagine what you’re going through. Please know that he will be sorely missed, and my boys will remember their friend.

  4. I cried reading this. My worst fear/nightmare as a parent. I am so so very sorry. My heart goes out to you and your family ♡

  5. Oh my…I am so very sorry for your loss. I don’t even know what to say. You are a very strong woman and I have nothing but admiration for you. God bless you and your family. Cameron must have been the most special little guy because God chose him. I wish I could wrap my arms around you and hug you. I pray that each day God will give you strength to help you through this. Again God Bless you all.

    1. Cameron was an amazing boy for sure! A part of me doesn’t want to ever get over the pain I feel today. Time passing without him is a scary thought right now.

      1. I agree so much with this. It’s been 9 months since I saw my beautiful brown eyed 11 year old girl. I miss her so much it hurts to breathe. These days I’m numb , I never knew numb was a stage of grief. How is this my life? I just find myself saying over and over I don’t want to do this anymore.

  6. Emily,
    I just read your heart-wrenching story and I am crying so hard that I can barely see to type this. I am so sorry. I am in awe of your strength during the absolute worst time of your life. I pray that you and your family will somehow get through this. (If you don’t remember me, I was one of your old music teachers.)

  7. Prayers for your hearts to be comforted. May God who holds your son in His arms help you feel His arms around you as well.

  8. Oh Emily. I am so sorry. Words cannot begin to even say how sorry I am. You see, 11 years ago my husband, David, and I lost our oldest and only son, Michael, in a drowning accident. He was 7. Reading your post made me go back to that day….a mother’s worse nightmare. That day, the sight, the sound, the ambulance ride, the waiting, the final statement that he didn’t make it, having to see him in that hospital, lifeless. It is a parents worst nightmare and a journey that I’m sorry you are beginning. Grief work is just that, work. The first couple of years will be a blur. Lean on others, one another, and if you are a believer, lean on your faith…even at your angriest days. God is our Father….He understands we don’t see the big picture or understand the why…but our children see and understand it all now. Lean on other mom’s and dad’s that have walked this journey. If you want to connect, please do. My prayers are with you, your husband, and girls. We, too, had two younger girls at the time of the accident. They are now teenagers.
    God’s grace and love be upon you. I leave you with my son’s favorite Bible verse: I can do all things through Christ who strengthens me. Philippians 4:13.
    Kim

      1. Oh Kim, as I read this I sit here and cry. I remember that day as well. My husband was one of the paramedics that day. He had a hard time with it afterwards. We have 2 boys and at the time, they were 3 and 6. Our youngest was not afraid of anything! I couldn’t imagine then and I cant imagine now what the two of you are going through. You are Both in my thoughts and prayers! Emily it had me crying from the time I started reading this. I am so sorry and will keep you and your family in my prayers!

        1. Your husband was one of our paramedics? I remember two gentlemen (don’t recall names). One was driving, the other was in the back with Cameron. I do recall both were very kind and tried to reassure me as they prepared for the transfer.

          1. Hi Emily,
            I realize I am reading this story a year since it was shared on my FB page, but my husband was the Critical Care Transport nurse in the back with Cameron. He and I are both nurses at APH. (Although I was not in the hospital that day.) Please know that we all grieved for Cameron and your family. I remember him saying how fast things happened and how terrible he felt looking into your face when you met them at the back of the ambulance, when everything had changed and he updated you and said he was really concerned, and then later when he realized it was your birthday. It is truly humbling to care for people at the most difficult times in their lives. I am so honored to work with those people who cared for Cameron. Even when they couldn’t save him, they made sure his mom could hold him and love him and reassure him on his way to Heaven.
            Blessings to your family. Thank you for sharing. You will always have a place in our hearts.

          2. This comment literally brings tears to my eyes! I do remember your husband. I have to say though that in those moments, we never stop to think about how our situation has impacted those around us. Those that had to give us the bad news and watch us fall apart. Those that continue providing care in the most desperate of situations. I am thankful for everyone. It means so much hearing that a year later we are still remembered (though I wish we were remembered for some miraculous recovery). XO

          3. I’m at a complete loss for words. That part where he asked you to help him buckle his seatbelt broke me. I don’t even have children and stumbled by this blog by accident. Best wishes.

  9. Dearest, I am so sorry for your loss. My heart breaks for you and your family. Burying your child is the hardest thing you will ever do. I know, I have lost two sons. My prayers for peace and healing.

  10. Wow..

    This was so incredibly hard to read. It is so well written that I felt like I was there at the table making the reindeer food.

    I can’t imagine how hard this was to write and that this just happened a few days ago.

    Bless his sweet heart and yours. I am so sorry you had to write this but thank you for doing so. I wish I could have met him. His love for Christmas just warmed my heart.

    Don’t beat yourself up for the things you didn’t do. There was nothing you could have done with the information you had at that time. He went to bed knowing he was loved and that y’all were there. I’ll be praying and sending lots of positive energy yalls way. God bless.

  11. There are no words strong enough to tell you how sorry we are for this loss. I applaud your ability to remain strong and write your experience yourself to share with the world. You are a great example of what a woman can be, especially for your daughters. Treasure them and try to enjoy each day with them.

  12. I have no words… just tears for you and your family. Sending many prayers and encouraging thoughts your way. Time will never heal this loss but I hope Cameron’s spirit will guide you in how to deal…. because now that is all you can do when your heart is not whole anymore…. Xoxo Emily

  13. Bless you and your family during this most difficult time. I am keeping you, your husband, and family in my deepest thoughts and prayers.

  14. Emily,
    I am so sorry for your lose and could never imagine what you and your family are going through. You now have a forever angel watching over you and your family. May you find peace knowing that. You have a world of supporters here. If you ever just need to talk, please feel free to reach out.

  15. I lost my son on Dec 8th 2012, he was 7 years old. I can still see his countdown to Christmas plaque stuck at 17. I can remember the last meal I made for him the night before and his face that morning when he noticed the snowman clings I put on the bathroom mirror. It’s been three years since it happened and it has not gotten easier, just different. I go on because I have a family and another son. You will be in my thoughts and prayers.

    1. I appreciate you sharing! Right now I’m only going on because of my girls. I’m terrified for time to pass. I don’t want a new normal.

  16. Dearest Emily,David and girls, I can not begin to express my sorrow for you all. My heart just broke even more reading your story and I so admire your courage and strength for sharing it. I will always remember the times I got to spend with Cameron and you at Nana’s in Ky. I will always love that little guy and his beautiful smile and gentle nature. Love you all very much. I know that God will never give you any more than you can handle and you will. You are in my prayers.
    Aunt Diane

  17. I sobbed reading this, I am so sorry for your loss of your sweet little boy..no words can express my deepest sympathy to you and your family, I do hope you find the answers of the unknown that caused this tragic loss..My prayers are with you and your family.

  18. I cried when i read your story you are a very strong person you and your family are in our prayers through this incredibly difficult time,

  19. I’ll remember you all in my prayers. My heart breaks for you all. As I read your families story I think of my half- brother’s story and you do always remember those last moments. Those little ones do know how to give you a special moment to hang onto even after 30 years of time passes. I can still feel, see and hold onto that precious time. Just a someone who’s praying you through. listen some time down the road. https://www.youtube.com/watch?v=6ilYi-PJGyc

  20. Emily, I do not know you, but I feel like I need to send my condolences to you and your family. Being a mother is the hardest and most rewarding job in the world. In certain situations, you think that you would completely crumble…but then you turn out to be the center stone for your child. My heart breaks for you and as I sit here crying, I cannot help but feel as though life is so unfair and no words will make how you are feeling any better, but just know that besides your family and friends, their are people like me praying and sending virtual hugs to you.

  21. I’m am so truly heartbroken for you and I can’t even began to imagine how your feeling, but I want you to know that you are in my prayers and I thank you for sharing your story. You are an amazing strong woman and I know by your description so is your son. Your son went home to be with Jesus and he will be waiting for you when it’s time. Please try to remember to focus on God and know you are not alone and he will not forsake you. Draw near to him In your time of need. God bless you and you will be in my thoughts and prayers.

  22. I am SO sorry for the loss of your beautiful little boy! That is one of my biggest fears as a mom! You are so amazing and strong to share your story. I can’t imagine what you are going through and will go through for the rest of your life! Praying for you and your family!!!!

    1. It’s surreal to be living a mother’s worst nightmare. I keep hoping I will wake up. Thank you for your kind words.

  23. Dear Emily, may God be with you and your family. May he give you and your family the strength and peace you need. Cameron is now an angel flying high. He sounds like he was a very special little boy. I am sure after reading your letter that he is watching over you telling you he is fine and wants you to be ok. May Gid Bkess you. My prayers are with you all. ?

    1. Thank you. I know he is watching over us. I know he wants us to be OK and go on without him. I’m trying…

  24. I’m so sorry for your loss. I can’t imagine your pain and grief….or that you’re able to share this story so soon. You must have amazing strength. Your story puts things into perspective and just how quickly our world can be turned upside down. I have a daughter the same age as your Cameron…I gave her an extra squeeze tonight. I can’t imagine life without her.

    Prayers for comfort to you and all those who carry Cameron on in their hearts.

  25. I can’t even begin to imagine what your family is going through right now. You are incredibly brave and your strength is shown by telling your story and keeping the memory of your precious little boy alive. I will be praying and sending positive vibes your way for weeks to come, in hopes that your family can continue on, but find a special balance to keep Cameron right there with you.
    All my love and deepest sympathies. <3

  26. Emily,
    I am so sorry about your loss. No words can take the pain away. This is a mothers worst nightmare and you are a very strong woman for sharing your story. I balled my eyes out reading it and I pray you and your family will soon find comfort. Cameron was in my nephew Michaels class I am Jaime’s sister and when she told me what happened my heart broke for you. I didn’t know him but my sister said what a sweet smart outgoing little boy he was and that he always had a smile on his face. Cameron is smiling down on you in the arms of Jesus and when you guys had your last conversation he wanted you to know he was ok and he loved you! I will continue to keep you and your family in my prayers and may God comfort you guys and give you the answers you need.

  27. Emily, your story touched my deeply. I have been wondering about Cameron ever since I saw someone else’s post about him the other day, and could not find any information about what happened to him. I was not prepared for what I just read. I often wonder, as mothers do, how I could ever get over the loss of a child, if forced to do so. I have never been able to think of a plan that would carry me through it. My cousin has been on that journey now for 9 years, and I am constantly in awe at the grace and strenth that she displays daily. Her other 6 children rely on her for it, and I believe that fact, along with the spirit that continues to dwell in every minute of every one of her days, are how she is able to live her life fully, despite the void she feels. You truly will be in my constant thoughts and prayers…Cameron will continue to touch lives through you and his spirit lives on in you. I am so sorry that you are experiencing the deepest sadness a mother can, and will carry you and your family in my heart.

  28. I am so sorry. I feel for you and your family. I will pray for you. I will pray that you feel Gods presence surround you and bring you peace. I hope you find answers why this happened. I can’t stop crying I can’t imagine how you are doing.

  29. I am so very sorry for your loss. ??? I don’t even know what made me read this but it truly broke my heart. I will be praying for you and your family. No one should ever have to go through that…

  30. I am so sorry for your loss. I can’t even imagine the pain. Prayers for you and your family.

  31. Emily,
    You and your family have been on my mind in and in my prayers. I hope you don’t mind that I shared this on my Facebook page. I wanted your true detailed story to be heard to help prevent any of those partially incorrect versions that tend to circulate in small towns. I wish I could be of some comfort to you. I lost my own son Jeremy to H1N1 influenza last May. I admire you so much for having the strength to share this openly.
    Blessings,
    Debbie Reed

    1. Thanks, Debbie! I’m sorry about your son. I also appreciate it being shared. To know that people know the true story is helpful in some small way. I’m hoping the medical records will provide some insight.

  32. Thinking of u you in this time of sorrow … May God wrap his arms around you and your family.. now you have a very special guardian Angel watching over you and your family

  33. I try so so hard to avoid these stories these realities because I am an Empath and I have six of my own dear children. We have had close calls with my youngest son who was born prematurely by four months. My oldest two are autistic and my oldest other two stepdaughters are well…going through a lot because of a mother who loves herself and hates us more than she loves them. I have these fears always. That I could wake and find that my oldest stepdaughter has tried to or successfully committed suicide…that my kids could end up with a severe serious illness that there is nothing I can do. And I just…I just can’t believe it happened to your poor baby boy. I still can’t stop crying or wondering why. WHY? I just don’t understand when it happens so suddenly and so so young. But I can tell you that our children are far more superior than we are in spirit and mutually here on earth. They are wiser and know where or when they are needed everywhere. Or what it is “time”. I have been all too close to so many lost loved ones and yes…babies and children. I lost a baby in between my kids but to raise and grow a child and to have that taken…I am so very sorry. With all my heart. I am sorry for his siblings…And you…his mother. That is truly the worst feeling. But of I can give you some solace…please know that they are not gone. Truly. I know you hear it a lot and will more but truly he is closer to you now than we can see, feel, smell, etc. Once we learn to raise ourselves to their frequency and their level we can be with them still. It is so very hard though not being able to have them with us here in their physical form where we can hold them and kiss them any time we want to… I will say that I truly believe that a mother’s if she can truly love their child more tban themselves and their wants/desires; unconditional maternal love (by your grief expressed it is obvious of your ultimate love of your son)… It’s a bond that is strong enough to keep us all together through life, sickness, and yes even and esp death. I think that you will be together always and I am truly praying for all of you. I feel for you so deeply and so powerfully. I do pray also for your broken heart and hope that you are able to see the signs and messages he surely will be or is already leaving you to comfort you through. Much love and light and god bless you.

  34. Emily, I couldn’t read the whole article I was in tears. I am so so sorry for your loss. This is so heartbreaking, all my prayers are with your family.

      1. I am very sorry for your life I pray for u to live a long life and just know that your son will always be by your side

  35. Dear Emily and family, I am deeply saddened by your loss and the sadness you are now feeling. Almost nine years ago I watched my daughter trying to breathe life into my grandson who had drowned in our pond on the fourth of July. I know the feelings you are left with because I went through it with my Melissa. we too could not stop the re-runs of the days events in our minds. We too could not understand why such a thing could have happened. Later Melissa found things left behind that truly made us wonder. she first remembered a conversation about our dog Fantasy (who had passed) and she told him that she was with Jesus. He said that he wanted to go see Jesus. several weeks later she found where he wrote RIP 2007 (the year he drowned)on the wall next to his bed. Emily, Trust that God has him in his hands and that he will get you through this. the day will come eventually that you will be able to celebrate his life. In the meantime, my heart and prayers go out to you and your family. Bill Henderson and I will continue to hold you up in prayer. Your father was the first one to hug me after our Garrett passed. although brief it was such a comfort, Rick will never know! I pray that you find comfort in your husbands,children’s and God’s arms.

  36. Dear Emily,
    As I read your son’s story, and sobbed for you, I pray that you find answers and peace. I also have 3 kids, 2 girls and 1 sweet boy…I just can not imagine….any of this!!! My heart breaks for your family. Don’t lose your faith, and ALWAYS share stories of him! God bless your family, ours will be praying for yours.

  37. I’m so incredibly sorry for your loss. I learned of this tragedy through your cousin, Laura. I know he will be missed by all who knew and loved him. It’s so brave of you to put into words the final hours of Cameron’s life. I hope things get easier for you with the love and support of your friends and family.

  38. Im defintely sittin here crying as i read this and as a father i am definetly not ashamed to cry for a familys pain, u too are so strong as u have to be for ur daughters .. itll nvr be an easy journey but it seems like from ur words u gave ur son the best life possible and im sure he is watchin ovr you and ur husband.. so sorry

  39. My brother was run over by a car when he was just 5 in April 1970. His birthday is on 121065. These two dates are the worst days for my Mom. She now has Parkinson’s and Dementia but she still remembers my Brother, Billy. She has always told me that you loose half of yourself when you bury a child. I was born a year later and I was her last child. My heart goes out to you because there was always a void in our lives. Yet, I knew he watches over us. May God comfort you and your family. God give you strength and understanding. Nobody knows what you are going through unless they have lost a child. We went and put put flowers on his grave this year and Mama just got back in the car. I know she still hurts but with the Dementia she can’t remember when he was hit by the car. Bless you all.

  40. Emily AND dAVID, MY HEART BREAKS FOR YOU. reading YOUR POST, I COULDN’T BREATH. mAY gOD RICHLY BLESS YOU AND YOUR FAMILY.

  41. Emily, I know exactly what you are going through, My 13 year old son, i was able to put my arm around his shoulder and tell him I Loved him, within about 10 minutes later, he was hit by a truck in front of my house. He was rushed to the hospital, He was pronounced brain dead also, it was the hardest thing in my life, to have to say yes pull the plug, and let my little boy go. Its been 11 years now. I cannot get over it. I miss him day after day. Not a day goes by without thinking of him. The only way I have been getting through this , is I tell myself Him and God are with me at all times. I have 3 other children. This is something a parent can never get out of their minds. I cant sleep at nite at times, i See him laying on that road lifeless. and the whole event. I even heard the impact. These are very haunting memories , that i cant get out of my mind. Take it one dAY at a time. I never did have any counseling, my feelings are they are worthless, when i kknow nobody can ever bring my son back to me. I just go every day knowing hes in a much better place then we are. I tell him I love him all the time. People would tell me it will get easier, No It Dont. Buy God Has his Ways. Stay strong for you and your family.

    1. When I lost my son I lost a part of me. I will never be the same person again. But i know i have to live. Its been 11 years but seems like it was only yesterday.

      1. My brain is telling me I need to move on and live. My heart tells me that I just want to curl up and stop. I hate my new normal.

    2. I appreciate your comment! I’ve grown numb to our story. It plays out like a movie over and over in my mind. It doesn’t matter what I’m doing. I’m not interested in counseling either. I know he’s with me. There’s nothing we can do to change what happened and have him back. So I’m just trying to figure out how to deal with a new normal…that I hate!

  42. Emily,

    My heart hurts so much for you & you family. I am so incredibly sorry for the loss of your precious boy. There are so many things we don’t understand that happen to us in life. My hope & prayer for you is that you continue to have faith in God & trust that He will always be there for you. You are such a strong mama.

  43. So very sorry, I am friends with Jack, Ellen and Morgan. My heart goes out to you Emily. This is so well written and beautiful. May your sweet boy Rest In Paradise always. Cathy

  44. I haven’t seen you in so many years and I never had the chance to meet Cameron. However, I feel like I knew a part of him thanks to posts and pictures you have shared on Facebook. My heart has been broken for all of you ever since I read your request for prayers and a Christmas miracle. I couldn’t sleep Christmas night as I kept checking for updates and hoped and prayed that what I thought was happening was way off. As much as it felt like a surreal nightmare to me, I can’t even begin to fathom how you have all felt. Not a day has gone by since then that I haven’t thought about and prayed for your family. I feel like as mothers, we are all bonded together in a way and although the pain and grief you are feeling can’t be compared, I have so much sorrow for what you have gone through and will continue to face in the days ahead. I will continue to send my love and Prayers to you and your family!!

  45. Emily, I can’t even begin to put into words how sorry I am. What you have gone through is truly unimaginable. I hope that you have plenty of love and support surrounding you to help you cope during this time. I’m praying for you and your family and hope that all the happy memories you shared with your sweet boy help you find comfort. XO

  46. I can’t imagine what you are going through, just reading your story my heart aches for you and your family. Please don’t blame yourself or think there was anything you could do differently, I would have done same thing in your situation there was no way you could know earlier what was really going on inside his body. Praying for you all!

    1. I’ve definitely played the “what if” game, but you are right! All the signs pointed to the same stomach bug we had several weeks before. I really only expected to go to the ER for fluids and to bring his fever down. It’s crazy how fast life can change.

  47. Emily, I pray that God will give you the strength to surpass this. This is very close to home with my little one. I can’t imagine what you are going through. May God give you and your family peace❤️RIP to your angel in heaven??

  48. Emily, I am so so sorry for the loss of your son. I am so sorry you are living this nightmare. I hope your other kids can give you the strength to continue on. I haven’t stopped crying since I read your story. I wish I could take all your pain away.

  49. I am so sorry this has happened to you. My heart breaks for you and your family. What a beautiful boy!!! I will look for a new beautiful, bright star in the sky. Nothing I say can help ease your pain. Please accept my prayers for you and your family and hopefully they will put some comfort in your heart. (((HUGS))) May God wrap him arms around you and comfort you.
    I am truly so very sorry.

  50. Emily,
    I am so sorry for your unspeakable loss. My thoughts and prayers are with you and your family during this incredibly difficult time.

  51. I just read about your son and was wondering what had happened. Thanks for sharing. I just can’t imagine what your going through. Cameron was adorable. I thought it was so sweet when he said he would see his dog in heaven. Sometimes when hearing about such tragic things happening to young children I question God. But then I think what if there wasn’t a God where would Cameron go? So then I think he is in a joyous place at peace and sure he is playing with his dog. Though we are hurting hear on earth I try and say to myself that there is a wonderful place to go when we leave this earth and that brings me peace knowing he is being taken care of and asking God to really help us now to deal with this tragic loss o earth. I believe and I am praying God will give you peace of mind and strength. It won’t be easy bit keep praying to God. One other thing I would like to mention that I read recently. A lady had lost her dog who she had for 15 years. She could not get over the pain of loosing him. She lived by herself. She wrote to Billy Graham and asked him do animals go to heaven even though they don’t have a soul. He replied that yes he believes that her dog is in heaven because God brought animals to this earth for a special reason to give people love and happiness. So Cameron right now is probably playing with his sweet friend. I hope this helps you a little bit. I will continue praying for you. God Bless.?. Sharon

  52. A few days before Cameron passed, I had a nightmare that my daughter had a seizure and passed away. I remember waking up, almost hysterical, feeling so relieved it was all a dream. I so wish that for you. That it was all just a horrible nightmare… The 26th, it’s weird, but I swear I could feel his energy. If I could I would trade my life for that little one, so he could have his Christmas with you… Happy, healthy, spoiled. 🙂 My heart breaks for you. Thank you so much for sharing your story. It helps those of us who love you to have understanding. This is a gift for us. Thank you.

  53. Thank you for sharing this. I will never forget this story as long as I live. I am crying so hard right now, thinking of all the times I didn’t take my daughter to the hospital when I probably should have (high fevers, vomiting, etc.) I will never “wait and see” again. Your story will remind me to do the right thing and take her in every time. Thank you for that reminder. It sounds like everyone did everything they could have for him. I wish with all my heart that this story had a different ending. Thank you for reminding all of the parents who read this, not to take our little ones illnesses for granted. Hugs and love to you and your family.

    1. I knew there was something a little different this time, but I never expected it to be so bad. We were big “wait and see” parents. Doctor them at home as much as you can. I’m thankful he was vomiting. If he wasn’t, we would have woke up to a completely different scenario. I wish we had a different ending too. Now I need to learn how to live with our new reality.

  54. Emily,

    As I sit here I feel completely paralyzed and I can’t even begin to the imagine the ocean of emotions that you must be feeling. (Your beautiful boy is the same age as mine). I will hold your family in my prayers for a very long time and continue to pray for your healing. I am so deeply sorry for your loss!!! I know that Cameron’s spirit will continue to live on in all of the lives that he touched. Sending you so much love!

    Crystal

  55. I am so sorry…. beyond words. We have been thinking of you all since we heard. We passed you today during drop off and I so desperately wanted to give you a hug/strength/everything and anything I could. But all I could do was wave. I am so very sorry.

  56. There just isn’t words to express how sorry and sad I am for your loss as a mom. I just can not imagine!! Thank you for sharing your story, I cried as I read it and felt your heart break. I pray you find peace!!

  57. …..every single detail, so fresh in your mind, and will be forever. You are a very special person, it’s no wonder your little Angel was so considerate of you, at his young age trying to shield you from pain. My GOD, such a mature 7 year old. I am crying so hard I can hardly swallow, there’s a lump in my throat. I prayed so hard that entire day, when Barbara and Marcia posted the news, I was devastated as if he were my own family. I will continue to pray for strength and answers for you and your family. I don’t know you but I can tell you are a loving and giving person, and above all, a wonderful mother. Cameron knew that. May GOD watch over you in this most difficult time in your life <3

    1. Emily…I googled to learn after knowing of many people losing their child and wanting to say and do the right things…I’m still speechless and I cry so much it’s embarrassing… i feel so sad, useless and helpless…
      I know there’s something compelling me to write to you and respond to all past, present and future comments…do not cease to forget our children though it’s so painful. They live on in our memories and if it wasn’t for you writing about them I would never had the chance to know what an incredibly beautiful little person they were…and know how much they are loved and missed so please do share your memories and think of all the things they would say and do just as they have never never left you! My Facebook is Mary Han Avina and mob is 0452193645, I am available to all 24/7. ..All my love for mine to you and your families always xoxox

  58. There are no words of comfort I’m sure, but I just wanted to say how sorry I am for your loss. I will cuddle my little boy that little bit tighter tonight and my thoughts will be with you all xxx

  59. My heart is with you all! I read your blog with my 13 year old daughter by my side and my 7 year old boy running around the house, I truly can not imagine your pain right now! May you find your biggest inner strength warrior to carry you through your sorrow. Sometimes we will just never understand LIFE, I guess it really isn’t for us to understand! <3 May peace be with you and your family. Tina-O

  60. I came across this story on Facebook and I almost scrolled right past, but something compelled me to read your story. My heart was broken for you and then as I got to the bottom and saw your name and picture I realized we went to elementary school together and my heart shattered and I couldn’t even breathe. I know that was ages ago but I can still remember your kind caring heart and your amazing smile. I noticed that your son has the same amazing smile. I am so deeply sorry for your loss and as a mother of a son close to the same age I can’t even begin to imagine. I know there are no words to comfort you during this difficult time, but please know that I’m praying for you and your family. I’m praying for you especially, for strength, courage, comfort and peace that passes all understanding in the days to come. You showed amazing courage and unthinkable strength just sharing your story. It truly touched my heart. Stand strong in your faith and lean on the Lord to guide you in the days and weeks to come.
    God bless!

  61. I am so sorry. My heart breaks for you and your family. I don’t have the words to console you but please know that you and your family are in my thoughts.

  62. My heart breaks for you and your family. I can’t imagine the pain that you’re going through. I am so sorry for your loss and hopeful that the doctors can give you some closure of what caused it. May he rests in peace and May God grant you strength to get through your daily lives without him.

  63. My prayers are with you all. If you want check out http://www.jw.org type in death in the search bar lots of comforting stuff. May Jehovah be with you. Revelation 21:3-4 promises us death will be no more. Try to think of death as a comma not a period your dear Cameron will do a lot more living in the near future.

  64. Dear Emily,
    I am so sorry for your loss… I am praying for you and your family.. I can’t imagine what your going through, it’s worse fear any parent never wants to go through.. Just no your little boy is watching over you and is with the angels now..

  65. Emily, i am so sorry for yoyr loss. I can only imagine how you feel. I am a high school friend of Sue Sparks. When i realized you live in the Orlando area, I tried to find out if there was anything I could do for you or your family. That offer still stands. I live in Orlando. Continued prayers for all of you.

  66. Emily and family, I’m completely devastated for you and your family.. I cannot even fathom the thought of losing my children it hurts my heart to even think of it.. My heart is in a million pieces for you,I’m praying and hoping you can find some comfort..Your special Boy will forever be with you..Everything your family does he will be by your side.. Thank you for sharing your heartbreaking story with us! I’m crying just thinking of your family losing him Christmas time a day after your birthday but most of all him losing him…I will pray for you!! Your all in my heart and prayers!!!

  67. Hi Emily
    My sister Claudia sent me your blog. I am so sorry for your loss. He was such a beautiful little boy. I was in tears reading this. I have 2 boys and I couldn’t imagine what you went through. You and your family have been on my mind since she called me. I pray you find the answers you need. loosing a child is something a parent should never have to go through. Again I am so sorry for your loss and for the world that will not get to meet this very handsome and smart little boy.

  68. God bless you and your family during this awful tragedy. You precious boy is always with you, can see and hear you and knows how loved he is. God takes the ones from us that are the hardest to lose… How we continue breathing is beyond me. Your strength and courage is an inspiration. May this loss only bring your family so much closer together. In moments of absolute agony, when you feel you can’t go on, please try opening a bible to whichever page is falls open to. And read. And take those words to heart. May they bring you the comfort and love and strength you need. When we are broken, only God can fill in the cracks. Thank you for sharing your story.

  69. I’m so very sorry, Emily. Cameron is a handsome little guy with such a big smile. I know this pain as well and have somehow muddled on through life for almost 5 years since the loss of my son. There are no words that will ease your heart right now, but just know that another Mom in Clermont is thinking of you and praying for your family. Much love to you.

  70. I am so very sorry for your loss. My prayers to you and your family. My 11 year old granddaughter passes away on December 17,2015 due to an asthma attack. My heart goes out to you. There are no words I can say to help the pain and emptiness. I will keep you and your family in prayer.

    1. So sorry to hear about your granddaughter! Kids should not be allowed to pass before their parents…let alone grandparents. Hugs.

  71. There are no words, that I can say to make any of this better. Just know in your heart, that he is always with you. As mom’s, we sometimes think there is more we can do, when there isn’t. Your entire family will be in my prayers

  72. Emily, You do not know me, but I am a friend (and former neighbor) or your Aunt Ellen. I read what you wrote a couple of times. I understand what you went through, are going through and will be going through. My grandson, Daniel, had meningitis as a baby and we almost lost him. His mother, Rose, who was a single parent, passed away from cancer when Daniel was 18. This happened 4-1/2 years after my son Geoffrey (whose birthday is also Christmas day) died of a heart attack. I am so very sorry and will be thinking of you and your family.

    1. Thanks for reading and sharing. This type of situation really opens your eyes to all the tragedy that exists out there. So sad. Hugs to you and your family as well.

  73. Emily, I bawled reading your story. I just want you to know that we’ll be praying for you. I know Cameron is waiting in heaven for you, loving you, and wanting you to be happy again. I pray that you’ll be able to do that, but I know it will be a long, long time. As you struggle to move on, try to remember that being happy doesn’t mean you’ve forgotten Cameron, but that you’re living life the way he wants you to.

    1. #WWCD (What Would Cameron Do) – That is my new motto. Thank you for your words. I do know you are right.

  74. Emily, so sorry for your loss. When I came across this story it broke my heart. My daughter Stefanie died from being brain dead on October 22, 2015, and it just kicks you in the gut. It is so tragic that we have to live the rest of our lives without our children. I wish I had great advice to give, but there are no words. Some people say that time will heal, but I don’t think we will ever heal it will just maybe be less excruciating. I hope so. All I know is that no human being should endure pain like this. There is no death that can come close to the loss of a child. I hope that you and your family feel all the love and support from everyone and that it somehow gives you a little sliver of peace. I live in Windermere so if there is absolutely anything in the world I could do for you please email me leemyrt70@ aol.com. I might sound strange but when someone has a loss like this it helps to talk to someone who feels like you. Much love to you and your family.

    1. I so appreciate you sharing! I am also sorry to hear about your daughter. It is devastating! The support has been overwhelming. And I will extend the same thing to you. Hugs!

  75. I am so sorry to hear of such tragedy that you and your family experienced during the holiday/birthday, and mostly just in general. As a single mother (by choice) of 2 year old twins, I find myself in fear of something happening to one of them or to me. Your amazing courage, strength and love for your son to make the right decisions is such an inspiration. I pray that you continue to find strength and even though no answers will ever take that pain away, that you find comfort in knowing the true meaning of love and the joy that your son brought to you (and others). I will continue to pray for you and your family. My heart breaks for you.

  76. As my heart cries out for you and your family, I can’t help but see your precious Cameron wrapped in the arms of Jesus, no safer place he can be right now. Cameron’s story will be shared over and over, because of the great love you shared with each other. You are a brave mother to be right there every step of the way, and being able to let go, but looking forward to your day you will meet again. I will continue to pray for your family to be wrapped in the arms of love by others around you who can help give ongoing support as you go through this time.
    May the Lord of peace himself give you peace at all times and in every way. The Lord be with all of you. 2 Thess. 3:16

  77. I don’t know you, and my heart is broken for you. As a mother of five, this is my biggest fear. You did everything right. Each time one gets sick, I always ask myself – are the “really” sick – should we go to the doctor, or am I overreacting. I usually say I am overreacting. You knew what to do and you did it. I can’t begin to imagine your pain. I thank you for sharing your story with us. We will not only pray for you, but I will pray to my mom in heaven and ask her to watch for Cameron. She was a great grandma to my children. I will also make sure that I never stop telling my children how much I love them. God Bless you and your family. I am so sorry.

    1. Thank you, Maureen. We know we did everything right, but we still play out the “what if” scenarios. We just keep telling ourselves that it doesn’t matter. What happened, happened. We now need to deal with it and keep moving forward. Definitely hug your babies and tell them you love them every minute.

  78. I, too, lost my favorite boy and had 2 girls to finish raising. We buried him the day before my birthday. It is the worst of this life! After almost 16 years, it still is. But I decided I could lay down and die too or move on.

    My husband and I found it helped us to talk about our son, Lane. We encouraged his friends to talk about him. I talked to total strangers about him! We never wanted anyone to feel bad for mentioning him or worried about saying his name, like they would upset us. In a way, it helps keep him alive.

    We laughed, we cried, we lived the best we could until new memories were made. Memories that didn’t include Lane. New memories with our girls.

    Don’t be surprised if some friends, even close friends, stop calling or coming by. They are grieving with you and for you. Some people just don’t know how to handle it.

    Do for others. There is something healing in helping others. Volunteer, work at a food kitchen, help out at church. Any little thing is better than sitting around wallowing in pity. I guarantee you will feel better for it.

    Mostly, talk to your husband! Many marriages fall apart after losing a child. Work on your marriage, fight for it! Understand what happened was no ones fault and that you did everything a caring parent would have done. As hard as it is to accept, this is part of Gods plan.

    And know that your boy is so happy, he would not want to come back, but he waits for you. Until then, live your life with joy in your heart knowing you will see him again.

    God bless you and your family.

    1. Thank you, Cindy! I agree, talking about Cameron helps. My husband and I have already said we want to always talk about it and never want people to stop using his name. I want to share every piece of him so his memory remains in other’s hearts. I’m sorry to hear about Lane. My thoughts are with you all. Even though it was so long ago, I’m sure it feels like yesterday. Hugs.

  79. Lord, I pray for comfort for this family during this heartbreaking time of need. I know that You have a purpose for this tragedy, one we don’t see or understand right now, but a purpose nonetheless. Keep Your loving arms around Ms Emily and her husband, many tears will be shed in their alone times and during the quiet of the night, give them Your everlasting peace and reassurance of seeing their baby again some day. Help them to lean on one another and draw strength, knowing they both lost a precious child. Be with them Lord throughout the coming days and always. In Jesus name, amen. God bless. I am so so sorry for your loss.
    Tammy Jones

  80. Dear Emily,

    Words cannot express how sorry I am for your loss. No one knows exactly how it feels to loose a child unless they have walked in your shoes. I myself lost my son Oct. 8th 2008. My sweet boy would have been 9 this January 8th. Just like your story it was a one minute he was fine and within 72 hours we were taking him off life support and telling him goodbye. I want to tell you that this gets easier. But it doesn’t. 7 years I have walked through this journey without my child and it isn’t any easier. But I will tell you the constant ache eventually hurts less. I wish I could tell you that you will stop missing him. But you won’t. I wish I could tell you that you will stop wondering what if. But you won’t. But I will tell you that one day it will hurt less and you will smile each time his name is mentioned. I will tell you that right now just thinking of your sweet boy is the worst pain you have ever had. But one day thinking of him will make you smile and laugh. One day you will use your story to help others get on with life instead of you wanting to give up on yourself. I will tell you that you may have lost a son but you still have 2 daughters, a husband, and a family that are here. Don’t forget about that when you don’t think you can go on anymore without your son. One day you will walk the streets of heaven and Cameron will be there to greet you. He’s just saving a spot for you. One day! 7 years for me and that is what I do is take it one day at a time. And I tell myself that this loss will not be forever it is just for a little while. Because one day I will be with my Tanner!
    Praying for you always! And know you are not alone He hears you and so do I!!

    1. So sorry to hear about Tanner. Hugs to you. I do believe they are there waiting for us…and here with us in spirit. A part of me never wants this pain to lessen because I don’t want to forget any part of him. It’s like this pain keeps him move alive. Crazy, I know. Thank you for your kind words.

  81. Emily what a wonderful mother you are. What a blessing you were for Cameron. He may not of been able to let you know, but what a comfort for him to be in his mothers arms at his greatest time of need. I pray that you find quiet and peace in your head and heart. You and your family will be in my thoughts and daily prayers.

    1. Thank you, Joni. I’m so glad I was able to be there for him right up until the end. I just wish our outcome was very different.

  82. Cody Alexander

    Am so sorry for your boy, I just lost mine on thanksgiving day I found him in his room he od on herion I tryed cpr but it was to late he was 21 and we was very close so now am trying to go on with out him but I don’t think I can I cry everyday and am in his fb page now I just can’t get my self to delete his account, I will pray for you so sorry I know how you feel

    1. So sorry to hear about your son! Hugs to you. Hang in there. I just keep telling myself that Cameron would want me to continue to live and find a way to be at peace. Your son would want the same for you.

  83. Emily,

    My heart goes out to you! I’m in tears as I read your story. I am a mom of 4. I’m sending prayers to you, your husband, kids, and family! Cameron is looking down on you all and will be waiting with it’s time for you all to reunite. God Bless You and continue to keep his memory alive #wwcd #whatwouldcamerondo Stay Blessed!!!

  84. That was incredibly brave of you to share your story. Encephalitis is a swift thief of life in many ways. I caught it myself this summer and stories like yours hurt. I ache for your family. It is obvious Cameron experienced immeasurable amounts of love. Hugs!

  85. I only started to follow your blog a couple of weeks ago. And to read that today… I just can’t believe it and I am only a stranger. It’s hard to find the words. Nothing will make you feel better. So I am just hoping that Cameron is happy & pain free with Max wherever he is.

    1. Thank you, Johanna. I appreciate you following the blog. I know Cameron is happy, pain free, and reunited with Max.

  86. Dear Emily,

    I couldn’t read your post and not comment.

    I am so very sorry that you have lost your precious son Cameron, and under such traumatic circumstances. Though I do not know you personally, like everyone else who has been so moved to comment, I am sending lots of love to you and your family at such a difficult time. Dawn x

  87. As I read this, I could not stop my tears from falling. Mostly because of the heartache your family is feeling and then because I can’t help but think “what if that was my little, 7 year old daughter?” I certainly won’t pretend to know the pain you are living through, but I can promise you that your entire family will be in my prayers in the coming days and months.

    1. Thank you. I know how you are feeling. I used to say the same thing about Cameron (my oldest) whenever I heard of stories, now like mine. Hug your daughter close. Try to remember that feeling even when you are frustrated with her. One of the things I said to myself early on in the hospital was “so this is what it feels like when people say hug your children for you never know what tomorrow brings”.

  88. I am so very sorry for your loss. I lost my son 8 years ago & can say I still live day by day. Only because I have other kids do I push myself to go on. I still replay the events of his passing in my mind over & over. You are amazingly strong & thank you for writing this blog. It will help so many.

    1. I’m so sorry to hear about your son! I’m finding this tragedy of losing children is all too familiar to too many. Hugs to you!

  89. You are in our prayers. He will be in our hearts daily. Thank you for sharing. With Love and Prayers, Summer

  90. I am Laura and Melissa’s neighbor. Ever since Laura told me I have been thinking and praying for you and the entire family. I met you guys once… The surprise visit to Asheville when your mom and Susan came down. I pray God will wrap his arms around you and carry you during this difficult time. My deepest sympathy to you and your family.

  91. Reading your story brought tears to my eyes. The incredible strength you and your husband is amazing. I pray for you and your family. You have such a precious angel in heaven that will forever be in your heart and be with you always. I am truly sorry for your loss. God Bless you and your family. Hugs from Clermont

  92. I am so sorry to hear of your loss!! There are no words that will ever ease your pain! I am so very sad for you and your family and I know that no matter what people say, you will always carry your sweet son with you until the day you go to be with him!! I applaud your strength and courage to share your story so very soon and I am sure you know that it will help others who may be facing the same situation. I grieve for you and your family as we all know how precious a child is, a Gift from God above. I pray for you and your family that God will hold you in his arms and give you peace that passes all understanding when it seems that you just can’t go on. We are praying for you and your family. God Bless you all!

  93. Emily, my heart goes to you. As a mother, I applaud your bravery and love for your boy.

    My mother in law lost her 8 year old (my husband’s brother) 29 years ago and not a day goes by without her talking about how great her boy is/was. The purpose of their loss? I, impetuously believe, was for her to comfort parents that will go through her same experience. You see, without people like you in this world, parents who loose their children in a sudden death would not know how to cope.
    You bring them hope.
    A great big hug from Mount dora, Florida.

    1. I know there has to be something good to come out of this tragedy. Helping others is the easiest. I am hoping to find a way to pay forward all of the love, support, and positive outreach we’ve had.

  94. I can’t even begin to imagine the pain you are feeling. Losing a child, under any circumstance, must be the greatest hurt that can be inflicted on a parent.

    A poem by Longfellow comes to mind when a tragedy like this happens:

    “The heart hath its own memory
    Like the mind,
    And in it are enshrined
    The precious keepsakes.”

    And another by Flavia:

    “Some people come into our lives and quickly go,
    Some stay awhile – leave footprints on our hearts,
    And we are never, ever the same.”

    Grief is how our minds heal the hurt in our hearts. When mourning ends, there is still sadness, but it is a sadness tempered by happy memories that remain. Because a child punctuates our lives forever, there is no period at the end of the grief we feel. We can’t change the tears and sorrow into joy, but remembering the one we love alleviates some of the pain.

    I believe that a loved one’s soul stays alive as long as it remains in the memory of all who loved him, and I imagine Andy is loved by many.

    I am so sorry for your loss.

    1. I have to agree, he will stay alive as long as we keep him alive in our memories. Thank you for your kind words.

  95. Emily and David,
    Cameron touched many lifes, including my own and my family. The girls and I are grateful for having had the opportunity to share a small part of his life with us. His presence and kind spirit will always remain in our hearts. Your courage and valor facing your pain is unmeasurable. Stay strong in your faith for He is always with you and will never abandon you. My prayers, tons of hugs, love, and kisses are sent your way. Love you all!

    1. Thanks, Karla! We always felt lucky to find you and have you care for Cameron. I’m so glad we reconnected. Love to you and your family!

  96. Emily,

    I am so sorry for your loss. Unfortunately, I know what it is like to lose a child. I absolutely HATE that dreaded conference room at Arnold Palmer. Please know that my thoughts and prayers are with you and your family. Cameron WILL NOT be forgotten. I say his name because I know this journey all too well. He is precious and he is loved. I have never met Cameron, but your love for him shows as I know this was one of the hardest things to put into words what you have just so recently experienced. The sounds of blaring sirens will never be the same, YOU will never be the same. And that is okay. Oh how I wish I would reach out and hug you – I’m right in Ocoee. I lost my son in April, so it is still very fresh in my mind and my heart. Please know that your grief is valid and real, and Cameron has etched a place on you heart that you will carry for the rest of your life. My heart breaks for you and with you. God bless you and your sweet family.

    1. So sorry to hear about your child! It does help to hear from other mom’s that have gone through it. Seeing them still living their lives. Still remembering their children. Hugs!

  97. I am so sorry for your loss ? My 5th son passed away April 1st 2015 and I just wish I could hug you. I’m so sorry.

  98. Emily,

    Thank you for sharing your story, I am truly sorry for your loss. I wish I had the right words, just know I care. My twins are in the same class as Melia, I never met Cameron but feel I know him now and will never forget him. My thoughts and prayers are with you and your family. Hugs

  99. Prayers… So many prayers to you and your family! You are such an amazingly strong woman and I wish I could offer more to you than just prayers. You will keep him alive in your heart forever… My deepest condolences.

      1. I wanted to share with you that your story has changed things within me that is hard for even me to understand. I want you to know although we are strangers, I pray for you all daily, and think about you often. I will continue to pray for peace and understand for you and your family.

  100. Emily, there are no words! Sorry doesn’t seem enough, but I will pray for comfort and peace for your entire family at this difficult time. Surround yourself with those who love and care for you and let them serve you at this time so you can grieve and be with your girls. Your strength is amazing, but I imagine you are also still in shock, which is expected. My heart was breaking for you as I cried reading this. Hugs!!

  101. I cannot imagine the pain you must be experiencing right now. I was with my grandfather when he took his final breath. It is a life changing, eye-opening experience that I will never forget. What I remember most from that day was my father repeating the phrase, “Absent from the body, present with the Lord,”over and over, as soon as my granddad passed. Being that he just watched his father pass away, I don’t know how my dad managed to have to strength to speak. I think it was his way of comforting everyone in the room, so that they knew as soon as a loved one leaves this world they are immediately wrapped in the arms of our Heavenly Father.

    Once again, I am so sorry to read of the loss of your sweet boy. Your family will be in many prayers across this country for months to come. I pray God gives you an overwhelming feeling of comfort and peace.

    1. Thanks, Ashlee. I agree, being with someone as they take their last breath is life changing. I also kept telling myself after he passed that it was no longer him. He was still here…but that body was not Cameron anymore. Prayers for your family.

  102. Oh Emily, My heart broke over and over. I remember “that little conference room” in the hospital that no parent ever wants to be taken to. I remember so many details of that room, and what shoes the hospital chaplain was wearing (because I could only bury my head and cry). This was almost 7 years ago. Reading your story, but gut wrenched and my heart was in my throat. It’s unreal. I have always said it’s just the stuff you see on the news. This doesn’t happen to normal people. Please, tell me that makes sense to you?
    All this said, fast forward 3 years later and my third child was exhibiting similar signs to your sweet Cameron. I fought so hard for help but they really couldn’t say what was going on. My child was disoriented, wanted to sleep, throwing up, often looked like there was no recognition behind the eyes – just staring and confused. This lasted for days – not nearly as accelerated as Cameron’s swelling. I broke down sobbing when I read what the doctors told you – *exactly the same words* the said to me. It’s a virus your whole family probably had, but it affected her differently and went to her brain. I was so scared, just like you. After burying one child 3 years prior, I just couldn’t fathom that this would be happening. They told me I was lucky for transferring hospitals and she had slow swelling. She was on the way to healing, but in the hospital for 10 days. She had a serious relapse 40 days later and we thought it might be really bad. She is here with us now, but has never been quite the same.
    I’m saying all this because I’ve been in both situations and I have had your family heavy on my heart since I read this. Please feel free to contact me.

    1. I have thought a million times “why us?” or “this doesn’t happen to people like us”. But it does, and it shouldn’t happen to anyone. All I remember about the chaplain was that I didn’t want to talk to her. Poor woman has a tough job! I’m so sorry to hear about your situation. It must have been even scarier going through this with your third child, after having already lost one. I’m glad your outcome was different. Hugs and prayers to you and your family!

  103. Emily,

    I am so heartbroken for your loss. Prayers being said for you and your family. Stay strong for your girls. May Cameron’s spirit carry you through these hard days… Jane

    1. Thank you! The girls are definitely our motivation to get out of bed and face the world each day.

  104. I am so sorry for your loss. I can’t even imagine what your family is going through I cried at the end of this. A parent having to bury their child is the worst thing imaginable. I will pray for your family and hope that your family finds the strength to overcome this. God works in mysterious ways and I hope with him, your family can find the strength to heal. Once again I am sorry for your loss.

  105. Your way of relating on this forum makes me feel every sorrow like I was right there with you I know I wasn’t and couldn’t feel what you must have felt I can only say I almost lost my daughter 3 times but by the grace of God she is still with me.My heart is heavy for you and filled with prayer to you and your family.

  106. Dear Emily,

    My heart aches for you. I bawled while reading your story. I lost my daughter in 2012, and still I have real bad days. But,I just wanna reach out and tell you about a wonderful group online called “formomsonly.org” and it’s all woman who have lost a child. These woman are amazing and you can write in a daily journal, and talk to them, because we all know what you are going through. It helps to to talk about it and to know that you are not alone. They even go on yearly retreats. Again hon, so sorry for your loss. Thoughts and prayers being sent ur way!

  107. Emily, I am amazed by your strength and love for your family. You and David are great parents… You really are. All of your children are such beautiful and wonderful kids. I didn’t know Cameron personally but it sounds like he was an angel already that was called back home. I can only imagine what you are going through right now and it’s been playing over in my mind so I can’t imagine yours. I pray you can maybe find some more answers to have some closure. I also pray that the days get easier for all of you all. I left my number the day of the memorial because if there is anything you ever need please call me!

  108. I don’t even know what to say…I am so sorry for your family’s loss! Your son sounds like a very special young man! I cried as I read your story…I want you to know I WILL be praying for all of you…may God wrap His arms around you and hold you close as you find your new “normal!”

  109. Emily, how hard it must have been to write this out. I couldn’t put it down. My heart goes out to you. It shows you that life is precious and can be short. God Bless you and your family. May your son be your guardian angel.

  110. I am so sorry for your loss. I lost my 13 year old last year. This situation being the same and waiting for tests which declared her brain dead. You are now part of a club that nobody wants to be in, nor many who can never understand. Especially when we ourselves don’t get it. I wish I could say it gets easier, or I wish I could say it all going to be ok. I which I could say that I understand what you’re going through but everyone grieves differently. Don’t be afraid to run outside and scream or spend the whole weekend avoiding outside human contact. My other daughter gets all my attention and that’s what gets me through. She doesn’t like to talk about it but that’s ok. Just tell your little ones you love them. You are going to have horrible days and that’s ok too. The best advice I was given was that it’s ok to be selfish because only you can grieve the way you need to.

    1. Thank you. I am sorry to hear about your 13-year old. I’ve had a lot of people tell me it doesn’t get better, but it gets different. A part of me wants to just stay this close to it. It’s like the more time that passes the further away he is. Right now I can still look around the house and see things as he left them. I know it won’t always be that way.

  111. As I was reading this I was assuming this had happened a few years ago. When I realized it was less than 2 weeks ago I was amazed you could put any coherent thoughts together, let alone write such a poignant story about your experience.
    Praying that you and your family find your way to your new normal and praying for comfort for all of you.

  112. Emily,

    My twins are in the same class as Melia, I never met Cameron but feel I know him know and will never forget him.

    Thank you for sharing your story. I am truly sorry for your loss. I wish I had the rights words, just know I care. My thoughts and prayers are with you and your family. Hugs

  113. Mommy hugs and love for you. I will keep you in my thoughts and prayers as you navigate this journey. Please find people you trust and can be open with to bare your soul as you and your family attempt to move forward. So deep and unimaginable is the pain of a child.

  114. I just wanted to say that you and your family are in my prayers! This broke my heart! I have 2 little girls ages 3 and 5 and I couldn’t begin to imagine how you’re feeling or what you’re going through! I feel like us parents should always be the ones to go before our kids so having that fall out of place and go the other way around is just not how it’s supposed to be. I know that God called him home for a reason and that he’s happy and healthy as can be, but I also know that it’s not fair. My girls have both had a few viruses already this winter and I never would have thought a simple night of being sick could end like this. Just know that Cameron, u and your family are in all of our hearts and praying for yall! I’m so sorry u are going through this!

  115. Dear Emily,
    We were in the PICU that night at AP. A friend came across this post and sent it to me. I had told her how heavy our hearts were because we knew a child had passed away that night. We had no idea what happened, how old the child was, gender etc. We just knew that what the family was going through was horrible. I passed by you and your family a few times outside of his room and all I wanted to do was give you a big hug. But at times like these I didn’t know what to do and figured you needed your space to grieve etc. without a stranger bothering you. I am so immensely sorry for your loss. It’s unimaginable. I sit here crying, thinking of what you’ve been through … what you will go through, and as a mother, my heart breaks for you. It sounds like Cameron was a pretty incredible kid so I’m glad you got to experience him for as long as you did. I know your life will never be the same. I can only wish that as each day passes you’re able to find a bit more strength and joy for the next day. I will never forget your story and I am happy he is no longer suffering.

    Sending love and hugs,
    Room 2014

    1. Wow! What a small world, right?! I pray your stay in room 2014 in PICU has a much better outcome! I don’t even remember the room number we were in. Never looked. I do remember seeing another mother grieving in the hallway. I too, thought about just giving her arm a squeeze and at least making eye contact. I didn’t either. Hugs back to you!

  116. Emily,
    I am so sorry about your loss, this was so heartbreaking to read. Thank you for sharing your story. Three years ago to date my 4 year old daughter became very ill, we went and were discharged from 5 different hospitals in one weeks span. One night my daughter fell to the ground as she could no longer feel her legs. It was a nightmare and I was thrown into autopilot. Reading your story took me right back to that hospital ICU room prepping for the spinal tap, to all the tests, unanswered questions, the sheer terror and panic I felt in the pit of my stomach at moments but covered in fear that she would see the uncertainty in my eyes. I still remember my calm motionless face and gentle voice that masked my uncertain fears. Sometime the next morning she was we had a diagnosis, Guillain-Barré syndrome. I never heard of it before. All from a little virus we all had, but for some reason it attacked her completely differently than the rest of us. Thankfully my daughter survived after months of horrible pain, treatments, and relearning how to do everything. She’s 7 now, she remembers all of it, but doesn’t like to talk about it. She has nerve damage to her legs that causes shooting pains, medical anxiety so severe that taking her for a route checkup is traumatizing and causes night terrors, and it completely changed her emotionally. I still have so many unanswered questions, I am finally at peace knowing that I will most likely never have the answers. I wish I would have written about it as it unfolded, like you, I think it would have helped as a therapy. Whenever I look back I don’t know how I managed to get through it all, the best way to explain it is autopilot. May god bless your family and carry you though this, May god help guide you while on “autopilot.”

    1. I’m absolutely still on autopilot. I don’t know how else to be OK going through my days otherwise. I know he’s gone and not coming back. Yet, it’s as if my body isn’t letting me really believe it. I’m so sorry to hear about your daughters condition. How scary for her to remember all that she went through and be so traumatized in her every day life. You will all be in my thoughts. I wish you strength and healing. Hugs!

  117. Hi Emily, I have been praying for you & your family since the day I saw Courtney & Marcia asking for prayers on facebook & I continue to pray for all of you. Cameron sounds like an amazing little man & I’m sure he will be taking care of his family from above. many hugs to you.

  118. Dear Emily,
    My heart is broken for your family. Although I never formally met Cameron, I remember seeing his smiling face at school. My youngest is in Melia’s class. From my family to yours, I offer our deepest condolences to you. Thank you for sharing Cameron with the world.

    Meghan Loden

  119. Emily,

    My heart breaks for you and your family’s loss. What a brave lady you are. Thank you for sharing your experience, inconceivable to me what you’ve been through. There is so much more I’d like to say but not in an open forum. My thoughts will be with you.

  120. God bless your family losing a child is the hardest thing to go thru I know I lost 2 boys one at birth and one 22 it’s been 10 years and I still can’t cope but just know we will see are boys again prayers and God Bless .

  121. Hi Emily, I came across your story through social media. I have a daughter the same age as your sweet boy and am local. I just wanted to send my condolences to you and your family. My heart goes out to you and I will keep you and your family in my prayers. Jen

  122. I cannot begin to tell you how much it pains me to hear about losing Cameron! I am so sorry for your loss. I cannot hold back tears when I read your post. I constantly replay your words and think of Cameron and my heart breaks!
    I find solace in how you are remembering and memorializing him. I truly wish we were here to attend his memorial and be part of the amazing ballon launch and celebration of his life! I read that Cameron has reached someone in MA! I am sure there will be many more lives reached by him! He will forever be remembered by is and so many more!
    I love how you’ve opened up to allow others to be touched by Cameron and his life. Thank you for your strength in this terribly difficult and tragic time. You are all in my constant thoughts and prayers.

    1. Thank you, Nena. We did have a wonderful memorial for Cameron. I plan to share it soon. The first balloon has been found. Crazy that it made it to Boston from Orlando. One more life Cameron has touched.

  123. Emily,
    there ARE NO WORDS TO DESCRIBE HOW SORRY I AM FOR YOU AND YOUR FAMILY. I CANNOT IMAGINE THE PAIN YOU ARE GOING THROUGH. I HAVE A 7 YR OLD SON WHO HAS MANY HEALTH ISSUES, AND EVERY TIME HE GETS SICK I WORRY IF THIS WILL BE THE END. I TRY TO PREPARE MYSELF, BUT I DONT THINK THERE IS A WAY. I AM SO SORRY THAT YOUR TIME WITH cAMERON WAS SHORTEN BY HIS SICKNESS. I KNOW I AM A STRANGER, BUT I WILL KEEP YOUR FAMILY IN MY PRAYERS.

    1. Thank you, Betty! I will keep your son in my thoughts and wish you continued health. I would never wish for another parent to go through what we have. We have heard from so many though with similar stories and it breaks my heart.

  124. I read your story while shedding many tears, even when my daughter (mother of three sons) suggested that I stop reading it. I told her that I needed to read it because you needed to share it. Two things I would like to share with you: “for every joy that passes, something beautiful remains.” The beauty is the love Cameron brought you that will never die and your memories of him that you will hold dear and treasure in your heart forever. And … I recently attended an inspirational talk hearing something that touched me … “God collects our tears in a jar and waters the earth with them to make the flowers grow.” When spring comes and flowers surround you, may your heart be uplifted and make you smile knowing that all the tears that God collected on Cameron’s behalf are covering the earth with beautiful flowers. I will remember Cameron and will be thinking of you …

  125. Emily & David I am so sorry to hear about your loss! Cameron looked to be such a special little boy and my heartfelt prayers go out to your family. Thank you for sharing your story with the rest of us, I know that had to be very painful.

  126. Emily,
    My husband and I had to make this same decision for our daughter, although she was only 16 days old she was born on Jan. 2nd 1986 she was actually the New Years baby that year. I know it doesn’t make it any easier but be thankful for the memories you have with your son that you had a chance to make, I didn’t get that chance. We had to take her off the respirator at 16 days old. That is not living that is existing, I still ask why, especially when after the long grueling day of siting there while they slowly turned the oxygen down to give her every chance to take as you said the last breath on her own, about a baby that was found dead in a dumpster. The only peace I get is that the way the world is going today is she has no earthly trials to deal with, and now they test you while you are pregnant for the beta steep that she injested while coming down the birth canal. I had a very hard time this year she would ha e been 30, I don’t know any of the likes she would have had the only picture of her without machines is of her in her little casket, I just wanted to let you know you are not alone and please don’t think me cruel and mean hearted, but as you can see loosing a child is horrific my mom just lost my brother to cancer one week before his 50th birthday last year, and I told her the same thing be thankful for the time God gave you to make memories, you will always have those to keep tucked in you heart to take out when you need to and remember how proud you are to be his parent! Hope this helps and once again does not upset you a lot I seriously am not jealous of you having your son longer to make the memories because then it makes it even harder to let go but I would give a million dollars to have just one good one of my Nichole!

    1. I’m so sorry to hear about Nichole. I agree and am very thankful for the 7-years we had. You can likely look in the mirror and see your daughters likes reflected back. I’m sure she would have turned out just like you (but a better version as we mom’s always hope). Hugs.

  127. Hello,
    Your story is so very familiar to my 8 year old girls.. She survived. She had encephalitis from an unknown source but I think she got it from the flu mist. She was in coma for three weeks and had to relearn everything.. Reading your story broke my heart. I am so sorry and pray for God peace for you and your family.

      1. Thank you. Your boy is beautiful I know he is safe and with his loving creator but I also know your pain must be unbearable. Prayer for you and your family for peace and knowledge that is is truly safe and loved with God.

  128. Losing a child has always been my worst nightmare, and I am so sorry Emily that you have had to endure this. What a precious boy. What a heartbreaking story. I can’t begin to imagine your pain when I feel like my heart has been ripped from my chest just reading about your sweet boy. I will keep you and your family in my prayers. You’re right. It is not fair. I hope and pray you can find peace. xo

  129. Emily,
    I am in tears right now reading your story. I have two young daughters and I can’t even imagine the pain you must feel. I am so sorry that you had to go through this and though I’ve never met you, I wish I could jump through my computer and just give you a big hug right now. Please know that you are in my thoughts and prayers! xoxo

  130. Emily , I just read your story.I am so so sorry for the loss of your beautiful boy. I lost a 17 year old daughter almost 5 years ago so I know the pain and lonliness you feel. I wish I could give you a big hug right now. My heart has been broken like yours. If you want to e-mail me anytime to chat about anything, I’m always here. Luanne

    1. Sending big hugs your way! No one should lose a child, regardless of age. It breaks you in ways no one can understand. Living each day as close to normal as possible is exhausting and sad. I do it though for my girls. Sometimes I think it makes people think I’m in a better place than I am. I guess that’s OK. I’m not sure I’ll ever really be any better than I am today. I appreciate you reading…and your understanding.

  131. I am so very sorry. Hugs to you dear mama. I can’t even imagine how you must feel. I pray that you find comfort and strength through this difficult time. I also hope healing comes from sharing your story. God bless you and your family.

    1. Thank you! These last 6-months have been difficult, but we are taking it one day at a time. Sharing our story has been very helpful.

  132. I cried as I read this. I can’t imagine going through what you did, on Christmas and your Birthday of all days. I am so sorry! I don’t know what I would do if I lost a child.

  133. Oh my god, I’m so sorry!! And you still don’t know what happened??? I don’t know how you can stand it. I hope you’ll eventually understand what happened and have some degree of peace about it. It warms my heart that the two of you had talked about heaven and he said he would wait for you if he got there first. But that also makes me cry. Praying that though every day is painful, your family will be a strong support and you’ll find some amount of comfort in each day. Love to you all!

    1. We just finished an autopsy so we got some answers. However, there are still a lot of questions that we will never have answers to. It is definitely hard. Everything now makes me smile and cry at the same time! Thank you so much for your kind words.

  134. My prayers are with you and your family. I lost a niece in one of my brother’s family of seven. There is a picture of her and individual photos of her six siblings; plus other family photos prettily framed on the mantel piece above the fireplace. We always remember her as a part of our family. This happened 10 years ago, but she will never be forgotten. There is a tinge of sadness whenever we reflect, but our lives go on, enjoying the precious moments we have whenever they visit and we are together. It will take time and it won’t be easy. Lots of Love. An Aunty to 20 nieces and nephews. Maria

  135. Emily, after you followed me on Twitter, I looked at your page & saw the link to this post. I had to click. I just finished reading this, sobbing for a mother I’ve never met in person, yet feel such sorrow & compassion for.

    As parents, our worst fear is losing our child. Knowing that you have gone through this tears my heart apart for you, your husband, & your girls. I’m so, so sorry that you’re missing your precious sweet boy.

    I’m glad that you shared your experience, as heart-wrenching as it is, because although no one can ever come close to taking that pain from you, sometimes knowing that other mamas are praying for you can help just the tiniest bit. I will be praying for your family.

  136. Thank you for sharing your story. I’m so sorry for the pain and loss your family has suffered and will continue to live with. It sounds like you did everything right too. I fear I wouldn’t even have acted as quickly as you two did. I grew up having lost my older sister who was only 3 at the time and seeing my mother’s bravery throughout my life without her. Our bond grew because of it, and I felt like I had to be perfect and everything for her as a result. We are still incredibly close and now that I am a mom I’m even more amazed at her strength. She says I was given twins (her only grandchildren) because of her loss. Not that it makes up for it, but she seems to like the idea. All my best to you and your family.

    1. Thank you for reading. I try to be very aware of the effect my grief has on my girls. It has such a deep impact on me and has changed me so much. I hope they never feel negative effects. So glad that you and your mom had a strong bond that grew because of it. You are right about understanding more about her strength and experience as you became a mother. It should never happen. Unfortunately, it happens more than we realize. Thanks for stopping by Tara!

    1. Thank you, Crystal! I have a hard time believing we are coming up on a year. Seems impossible. I appreciate you reading our story and commenting.

  137. Emily, your story brought me to tears. Such a beautiful sweet boy taken from this earth far too soon. I admire your strength in sharing his story. Sending all my love and prayers for you and your family.

    1. Thank you for reading and posting your sweet comment. It’s hard to believe it’s almost been a year. I work hard to keep his memory alive.

  138. I just read your story for the first time and my heart broke for your sweet family. I am praying that 2017 is a wonderful year for you family. Your strength over this past year is an inspiration to me.

  139. Oh I’m so sorry. I cried reading your story. I can’t imagine what your family went through. We lost a son at birth and nearly lost my daughter in a near-drowning accident. Your story brought back all of those emotions for me. What a devastating loss. Reading this, I kept thinking that you are exactly the mom he needed while he was here on earth. You were so strong for him.

  140. I read your story and I could not stop crying. My heart broke. I am so sorry you lost your sweet boy. Be strong! My best wishes to you and your family!

  141. Thank you for sharing you story of loss. I hope God will provide you and your family with peace. Your story tugged at my heartstrings. I lost a young man, he was a former student, that I considered my son. He was on his fourth tour of duty. How do you live after losing a child? I don’t know. I do know my boy would want me to live life to the fullest and see the joys in my life. I try to honor his memory by doing just that. I know you will find your joy again as well. God bless you.

  142. i am going thru the exact same thing you are! our ‘healthy newborn baby boy’ was born on 12/16/16 and passedaway on 12/24/16. he passed from a midgut volvus. unknown to us, we was born with malrotated bowels and the day before we were to go home he was sent to the childrens hospital had multiple surgeries and tests & complications and ultimately his bowels had all died and a transplant was not going to work. on top of that, i had my tubes tied during my c section on the day he was born. i always told myself i would be happy with just my 4year old daughter, but i dont think i really truly took it into consideration..because im miserable. the one thing i cannot get over is the anger at myself for deciding to tie my tubes & knowing without paying a hefty price for another child, i will never have another baby & it hurts soooo bad. i will continue to follow your blog and read everything as this may help me cope thru the first year of loss.
    thank you so much for write this blog!!!

    1. Thanks for reading, though I wish you never had to find this blog. Heck, I wish I wasn’t writing it so things could be different. The decisions that we make, believing we know what we are doing, are the hardest. I have a few of those that in the moment made sense (and I tell myself that), but now knowing how the story ends makes me wish I had done things differently. Much love to you as you navigate your first year (and beyond).

  143. Hi Emily,
    Maybe you won’t see this. But on the off chance that you do, I want to say that I’m a 17 year old boy who woke up in the middle of the night and stumbled upon your blog while reading about relationships between a mother and her son. I read your post at her-view-from-home about your son and thought it was beautiful. But when I looked at your bio and came to your blog and learned about Norrin’s passing, my heart cracked.
    It’s 4:00 in the morning as I type this where I’m from. Now I’m sitting alone while everyone else in the house sleeps, just trying to fathom your tragedy. I’m so sorry about your son, Emily. I wish to hell it never happened, and I pray he finds peace and that he’s now in a better place.

    1. You are very sweet for reading and commenting. Thank you. I hope you found (or find) what you are looking for as you read about mother and son relationships. It is a topic very dear to my heart.

  144. Oh Emily. As I read your words I was taken back to the hospital room. Back to the words that my 17 month old son was now brain dead. Back to the feeling of I wouldn’t let these machines keep my child alive for my own selfish reasons. I hate that anybody else can put into words my pain because they have been there. I am so sorry, Emily.

    1. I transport back to that hospital room so often. I’m sure you are the same. Those moments just replay no matter how much time passes. I still can’t believe it happened, and feel like I question what is real. I wish no one knew that pain. Sending lots of love your way.

  145. I cannot stop crying as I read your blog and feel the pain you had to endured. I am truly sorry for your loss and wish you peace.

  146. I just wanted to say thanks for sharing this with us. As a father it really hit home and reminded me not to take time for granted…. I really hope you and your family continue to find a way through it. My thoughts are with you

    Jason @silahorizon

  147. I may not know your pain – but my brother and sister in law do. I have my own pain too. Cole was my little nephew. He died last year 13 December 2017. Exactly the same way as your son. Also unexplained. Drs behaved the same way. Gave no hope. We have no idea what happened and why. Reading your story it’s almost exactly the same. Except Cole was just about to turn 3 (23rd December). We all miss him so very much. Our hearts are constantly aching knowing we have to live each day without him. How do you cope? It would be great if you could speak to my sister in law about how you have been coping these past few years. I am so worried about them all ?

    1. Natasha, my heart breaks hearing your family shares a similar story. We endured a 6-month autopsy and FINALLY got answers. We discovered a rare genetic disorder that causes a blood disease. We had no idea he had it and there were no signs. Through this testing, we also identified my husband and both of my daughters have it. So, in a way…he saved them as we now know what we are dealing with. Though I wish we didn’t have to find out this way. It’s so difficult not knowing. We still have a lot of things that are unknown, that definitely makes it harder. Sending lots of love to your brother and sister in law…yourself as well. It’s so difficult to lose a child. Give them time. It took my husband and I 9 months to come out of a grief fog. Through that time (even now) I don’t want my grieving to end. In a strange way, I feel closer to my son in those moments. It takes time, but they will find their way. Everyone grieves differently. I have many bereaved parents contact me through the blog (or follow on facebook). She is welcome to. I usually leave it up to them as they have to do it in their own time, when and if they are ready. Just be patient with them (and yourself). This isn’t a process that has a finish line. It literally changes every aspect of your life. Hugs ~ Emily

  148. Hi Emily. I hope the days and nights have been gentle on you and your family. It makes me sad to know of another parent who has lost his/her child, it is a lonely thing to go through, even as the immediate family grieve together, the grief and the pain is still personal. Leia Kate, my daughter, passed away on the 26 Dec 2010, four months after a premature birth due to a host of various medical issues that came one after the other, even though initially everyone thought she would not be affected by those. We were hopeful, and even when we were overwhelmed by the bad news, we still believed she would be back home with us for Christmas. She did, our prayers were answered. But I guess, we just don’t know what tomorrow brings. I hope your tomorrows have been better, and will be better. Take care.

  149. I have no words, just lots of tears reading that. Thank you for sharing your story, you are incredibly strong. I lost my daughter in 2015 and it feels like yesterday. The pain never goes away, you just have to find a way of living with it. Your son would be so proud of the help you give other grieving parents.

    1. Thank you, Jane! You’re right. The loss always seems to feel fresh, even after time passes. That’s something I wish people better understood. Hugs to you.

  150. Emily, I’m sorry for your loss, i just lost my son the exact same way a week ago, what was the blood disease called, we are still waiting for answers as to why/ how my son passed. It’s frightening how similar our stories are, my son was 9

    1. After a 6 month autopsy, my husband and I were DNA tested based on the only thing they could find. We discovered a rare blood disorder – Porphyria. Our version of it is HCP. It’s a hereditary disorder that impacts your red blood cells and their ability to carry oxygen through the body. Good luck on getting answers. It is so difficult waiting and not knowing.

  151. I just lost my two boys aged 9 and 1 in a viscous car accident. I don’t know how I will go on. My Daughter survived along w mom. Been searching for other parents who have lost kids. It’s been the thought wrk of my life.

    1. Bryan, my heart is breaking for you! Child loss is the worst possible thing to endure, and the fact you lost two of your boys makes it so much worse. My first 9-months were a complete fog. Our daughters were the only thing that kept us going. What I found on my search for other bereaved parents was so many out there (writing blogs anyway) were talking about miscarriage and baby loss. It just didn’t resonate for me being my son was older. That was a big factor in why I felt compelled to share our story. There aren’t enough voices out there helping people that lost older children. It really does disrupt and shatter every aspect of your life. I don’t know what your belief system is, but for me it has been medium readings that have really given me so much strength and hope! Things no one could have known, obscure things I only discussed with my son in my head came through in readings. There was no way they could have known some of it even if they researched every post I had ever made on the internet. Solidified my belief that my son is still here with me. It’s literally the only thing that has given me comfort. So, if you believe, look for their signs. Sending you lots of love and strength as you begin this journey none of us imagined ever being on! Hugs! Emily

  152. Thank-you for sharing your story. I’m sure it was extremely difficult to write. My six year old son died 12 weeks ago with very similar symptoms and similar timeline (approximately 16 hours from first symptom to unofficially brain dead). We got the autopsy report back this week and it was inconclusive. Which DNA test did you take to learn that you had Porphyria? Was your son on any medicines prior to becoming ill? My son was on a couple of medicines for asthma and I’m just looking for any information that I can find that may shed some light on what happened. Thank-you.

    1. Wow, Josh. It sucks not having answers. Even though we eventually got some, there are still some mysteries. Our Porphyria diagnosis came through the autopsy findings (that took 6 months). The CDC was involved. They confirmed there was no bacterial or viral causes. They ended up running a heavy metals panel. It brought back our first potential hit. They ruled out all lead/metals poisoning at the hospital that night, which led them to a really rare potential hit (porphyria). My husband and I went through genetic testing with Mt. Sinai (they had a porphyria specialized lab). My husband tested positive, which we never knew he had. Because of the variance he tested positive for (there are 7 different types), the leap was made that my son had it. Based on that, we know without a doubt his attack came on based on medication we had administered that night. We found a few different online pharmaceutical sources that stated it shouldn’t be used by those with porphyria. While no one will confirm for us that was in fact the cause, it is the ONLY thing that makes sense. Based on our diagnosis, we were told to have our daughters tested as well. They both tested positive. So now, we watch and manage all triggers. So really the only way we knew to test for it was a heavy metals panel that didn’t make sense and a pathologist that kept looking. Good luck in your testing and search for answers. It helps, but it doesn’t end the questions of what happened. Nothing ever will. This stuff just isn’t supposed to happen. Hugs!

      1. Thank-you for taking the time to write back. I have a follow-up meeting with the doctor this coming week and I plan on mentioning the heavy metals test and porphyria. I’m going to keep on pushing but I am discouraged. When we met to discuss the autopsy it seemed that the medical staff was resigned to the fact that we would never know what killed my son. They said they get 2-3 cases a year where they never determine the actual cause of death. They were most surprised by how quickly he died. Thank-you again and and thank-you for creating this website. I’m sure it has helped many people.

  153. Does it ever get any better? Living life without a reason for living?

    I lost my son 4 weeks ago and I can’t imagine going through this any longer….

    1. Over time, you will learn to carry this grief. While it doesn’t “get better”, it will get different. The pain will not be so raw. You will learn to live your life around the hole that has been left by your son. For me, my reason for living is my son. I know he is still here with me. He has proved that many times and in many ways (I’d be happy to share more if you’d find it helpful). Just hang in there. Do what ever feels right to you. Don’t compare your grief to anyone else’s. Keep putting one foot in front of the other. Sending lots of love.

  154. Hi Emily
    I am sorry for your loss. I lost my son Rino who was only 3 on 6/22 /18. I really don’t know how to go on in life I get mad at god asking him why he did this. Everyone tells me he is in heaven and I can only answer back but he needs to be here with us.

  155. Hi Emily,

    We are going through the same child loss, we lost our son Aneesh on july 20 2018, 8 years old. Our story is exactly same as your story. Exactly same….brain dead.
    We lost him in few hours, we could not do anything…just watched him go away.
    We are unable to live without him.

    Thanks,
    Madhuri

  156. Dear Emily,
    I red your story over and over and cried over and over. I just lost my 7 month old baby last month and I’m so empty, confused and angry. He had an open heart surgery due to CHD and he didn’t make it after 1 month of battling in CICU. I watched my little boy took his last breath, and I finally got the chance to hold him again and lay on my chest one more time. He is a Christmas baby by the way 12-25-2017 I’m totally a different person I’m glad my husband and our 2 dogs are with me. But still it’s so fresh to me that I already know that I will never be the same. I will try my best to live with it. And it feels like I’m in he’ll on earth everyday. Thank you for sharing your story. I have great 7months bond with my son and build so much memories with him so I can’t imagine how you feeling about losing your 7 year old son. It’s the hardest feeling and I’m so lost without my son.

  157. My heart melted. May GOD give you the strength to bear this. Emily, your son is with you, you just can not see him. My prayers are with you and your family.

  158. Emily,

    My heart breaks for you> You describe it with such detail and its so vivid. Somewhat similar to our story. We lost my step son, Lil Tony, 15 August 28th. I’ve ran across your blog more than once and I don’t think I was emotionally ready to read it yet. Thank you for sharing such a personal experience. I cannot even close to imagine the pain of losing your little boy.

    Our story was somewhat different. Lil Tony was Type 1 diabetic and diagnosed 4 years ago. I have done a lot of research before and especially after. The temperature, the constant thirst, the throwing up, and the brain swelling is common side affects of DKA and a lot of children go undiagnosed. I’m assuming they had checked that at the hospital with you.

    Basically, after he was diagnosed with Type 1, anytime he got sick, it affected him way different. He had a sinus infection(never had one) in July with headaches that wouldn’t go away. Multiple hospital visits. Dehydration, sinusitis, DKA and a headache that just wouldn’t go away. Back to the hospital and a CT scan/MRI showed 2 golf ball sized abscesses (bacterial infection) on his brain. Emergency surgery. no brain activity, craniotomy, lobectomy, and another craniotomy and brain swelling that just never went down. 5 days of multiple brain tests. He past on 8/28/2018 at 10:33am surrounded by many family members.

    We had an Honor walk since he was donating his organs. We did find some peace by donating his organs to 4 men to save their lives. We were the 1st Honor walk at PCH.

    That fog that still hasn’t quite gone away. Still not quite real. Making sure everyone else is OK. We have 4 other children that we get to focus on and I completely relate to wanting to get information out there to help someone else. It does help and thank you for sharing such a personal, real life experience. My heart breaks knowing so many people have lost children and the horrible brain death test. Sending love and prayers

  159. Thank you for sharing your story. I lost my 14 month old baby boy in June this year and my story is similar to yours. It all happened so suddenly and I am still battling to come to terms with the loss.

  160. Dear Emily, no one understands it better than me and my wife.
    We lost our 4 years elder son on 7th September 2018 and our story is pretty similar.

    Reading about your son I felt like it’s our Dhanvin, me and my wife called him Timtim.

  161. This breaks my heart! I just hope you know how strong you are and your little boy is looking down on you and im sure he is so proud!

  162. Thank you for your remarkably honest and poignant account of your son’s death. It must have taken a lot of courage to write. I admire your strength and composure. It’s hard to write this. My son died in 2005, three weeks after his first birthday. I’m crying as I write this. Life has gotten better, but the pain never goes away. I pray you and your family find peace.

  163. Hello Emily,

    Thank you for sharing your story. I am so glad I came across your blog looking for some kind of solace and comfort for myself. I am approaching what is to be the first anniversary of my sweet daughter Mia’s first anniversary of leaving this earth and becoming what she used to call, “a part of the universe.”
    She was just 20 years old and was the first registered death of 2018 on January 1.

    Your courage and strength are remarkable and I can only hope and pray that reading stories like this from a mom who get it, will strengthen me too.

    Thank you for inspiring me to use writing and this unexplainable journey of pain to create a story about a mom who has a daughter that said one day, “mom, what if when we die, we all just become trees.” [future blog… MiaAngeliBecomesATree]

    Many blessings to you and your family and may the spirit of your son, as my daughters, be with us through the rest of our lives..

    Eve

    1. Eve, I’m so sad to hear about the loss of Mia! Sending you lots of love and strength. Though, you are stronger than you ever believe. And you are right, our children are all around us the rest of our lives. Hugs.

  164. Emily,

    I am only 19 without any children, so I cannot begin to imagine what feeling a child must feel like, but I’m really glad I came across your story. To be honest your account of losing your child made me cry which is something I do not usually do, and being a medical student I have to hide emotions quite regularly. Im currently writing an essay on the effect of child-loss on parents and would be grateful if I could use your account as one of the sources.

    Im sorry for your loss Emily.

    1. I think it’s great you are focusing on the effects of child loss on parents. In my opinion, there should be more training for medical professionals around dealing with loss and grief. Please feel free to reference our story.

  165. Today I seem more lost than ever. My son was 12 years old, 2 months shy of his birthday.
    I just dont know what to do anymore, he is my youngest and my world.
    I am struggling. I feel like no one understands.

  166. Emily,

    I found your Pin about “what to say when someone dies” and followed this link to your story. I couldn’t help but notice that your son was only 2 months younger than our youngest son, Trustin. We lost him too, just this last year on October 3rd. THANK YOU for sharing your story. THANK YOU for sharing your heart. I can’t tell you what it means to me right now. Trustin died in a freak accident on our farm. He fell and hit his head on a piece of metal. Just like that, he was gone. Nothing could be done for him. I’m struggling to get everything to settle with my heart and mind, but reading your story and knowing that someone else out there knows how this feels, helps so much. So, thank you. Again.

    -Missy

    1. Hello Melissa,

      My heart understands yours. Receive my hug.
      Our first born and genius boy Victor was hit by a car on September 1st, 2020. On September 7th we turned around to let him donate his organs. We was brain dead. I wish something could have been done to save him but BD left no hope.

      I can’t handle the pain most days. I can’t see his pictures and memories from Facebook without crying. I can’t still believe that this is true. It was shocking, traumatic, tragic, sudden that I could not believe that he was at the hospital back then. He was healthy, he was obedient and respectful, he was crossing the residential street coming back to our house from the end of our street, and almost on the other side when the driver did not see not see him, the driver only used the brakes after hitting him, our child, my first love, my best friend. We have a daughter, she will be 3 this moth. It is hard for her, as she misses him A LOT. She talks about him and tries to find him. She says she can save him, she will “catch” him.
      Víctor and I were so close 🙁 since he was little I played the cartoons I watch as a child and then some shows. He watches them until he was big 🙁 how can I watch those shows again. His room is closed I can’t walk in there.

      We are seeking justice. The car/driver that caused this is still in the neighborhood. Victor Stanley deserves honor, we love him so much and have been crying daily since day 1. So in our case it is not about medical answers but the desperation and the why, and the shock is terrible.
      Last night the neighbors shared something that showed on their camera recently. It shows a shadow of what seems our child running towards our house as their teenage child was parking his car in the driveway.
      It felt surreal, I never saw anything like this on a camera, it is so clear. They believe it was his spirit. I want to believe it too since the shape looks like my son. As I cried last night I pray too asking God to give us peace. I see signs and they are meaningful and precise that I want to really believe that our loved ones can communicate in this way because it can’t be coincidence.

      The last I love you of that day minutes before the event. His hazel eyes 🙁 are still in my mind. This is a nightmare. Tell me please Melissa how have you gotten by.

      I send you a hug of understanding and love.
      Luisa.

  167. Thank you for sharing your story ,Emily. He sounds like an incredibly strong, sweet boy. I am so very sorry for your loss and this traumatic situation you and your husband found yourselves in. It is evident through your words that you did everything you could for him and will grieve his loss forever. He is irreplaceable. Your love for him will stand the test of time.

    We recently lost our 6 month old daughter to a rare genetic disorder. I pray in time we will test our children regularly to gain more information that can help decrease the likelihood of these types of horrific scenarios for parents. Your family will be in our prayers.

  168. I had a sister (8 yrs old)that died from cancer we sort of have been in the same thing. May my prayers be with you.

  169. Emily…I am so truly sorry to hear what had happened to your son. I, too, lost a son that same year and still struggle with it every day. I wish there was something I could say to ease your pain, but just know that you are not alone. Just find comfort in knowing he is always looking down on you with a huge smile on his face

  170. Hi Emily, I lost my son this past November, he was 31, but still my baby boy. I hate this exclusive Club we belong to, life will never be the same. My heart is broken. I send you my prayers. Lori

  171. Hi there we lost a 2 year old son on his birthday…our house burned down I still have 6 children under 10 I’m sorry for your loss no one will ever understand unless they go through losing a precious child xxxxxxxxxxx

  172. My daughter Sarah suffered a cerebral hemorrhage on June 26, 2019. Her body survived 9 days in the hospital. She never regained consciousness. Several family, friends, and teachers were able to visit her and say their goodbyes.

    In the quiet of the morning of July 5, just around sunrise she left this earth. Her blood pressure had started dropping around 4:30 AM and we knew it was the time to let her go. She held on for a few hours as my wife and I sat by her sides, holding her hands. At one point, I had to step out of the room for a few minutes. As I stood in the hallway of the hospital, I felt a quiet and peace that I had not known during our time there. When I stepped back into the room, the doctor looked at the clock and said 6:58 AM. She was gone.

    She was my daughter and friend. She was a sweet, caring, empathetic girl with a heart of gold. I miss her dearly.

    1. Joey,

      I wish we were not here talking about this, but I pray for peace and comfort everyday. I also cry daily.
      Victor was 10 but I felt secure with him. As you I feel I have lost a very good friend, my inspiration and first love.
      He got hit by a car on our residential street and got brain dead.. From September 1st to the 7th, 2020 our lives have changed and got filled with sadness and confusion. He should be here, he was doing the same routine he often did, riding his bike. He was amazing as a human being, unusual one of his teachers called him once based on his high sense of respect and responsibility.

      How old was Sarah. Age and ways of departing do not matter but I am just notice I did not see the age.

      I want to know how you are doing.
      Did you and/or your wife went to therapy?
      What has worked for you to “walk through” life without her physical presence?
      They prescribed medication that I am not wanting to take “yet”, instead I bought some anxiety soother drops at Whole Foods similar to Valerian roots. But it is too soon to know if they really work.

      I send you a hug to you and your wife.

      Luisa.

  173. I am from south asia. And a buddhist. Our releigeous beliefs aare very different about death. And after death .all. Of us have kited befor as humane beings we had earlier lives and met each other As parents , offsprings. Freinds. too as family members. And will be reborn again again untill we elliminate our desires and anger and delusion of eternity. From our minds. At last moment we remind dying person not to be attach to people who he or she. Is. leaving behind but. Keep his or her mind on good work they did while alive. happiness he or she gave to others and his ornher generosity . To family and others like His or her own good qualities. And rejoice about himself. . Somhe will not be born in spirit ghostly abode. Watching his loved ones. Spirit world is not good birth as humane birth. Mostt goodbpeople can be reborn in family or extended familys. Soon after they leave their bodys. Some kids can remember his or her previous life. And under hypnotism too. Adults can remember . Read dr. Brian wise hypnotists.( In america. ) with his patients.How patients. When hypnotoised said about their past lives with same parents and family. Sometime kids who died when their parents are young are reborn as their next child. . Or be born to a sybling when they. Become parents. If the. Late child was much attached to family at moment he passed away. Read edgar casy who lived last centuary in virginea america who was christian preist from virginea u.s who never believed or heard abot dead person ever reborn in earth as humane being suddnely went to trance and found past lives of many even about himself in various parts in world and found cause of incurable desease people had and found cure for those sicknesses. Francis story british pschologyst. Ian stevenson another american doctor went all over world to investigate about kids and adults who said about their earlier lives as humane beings. I know evangelist and hard core christian s dont believe any other faith but bible. Explaination. And muslims similiar thing heaven hell and earth only. It is a free world . One can belive even a myth. But truth is one. So far no one came who died from heaven or hell to tell others where they are, so everything is what relegeon teach. But today the trend is different. Can investigate other views. . Scientific too.The cause for bith and life Its end is common to all whatever one believes. The truth is everything every one is impermenent in this earth. Only time range differ. Sickness old age death is permenent feature to all living beings we cant hold any one anything tight. Our greif too we must never hold tight. Must let go.. All emotions are not permenent as life is not permenent. Only permenent feature is everything is impermenent. . Power. Money or love. Cant hold anyone anything tight. Forever. It will leave our grip. We must learn to accept that without too much struggle. Of course we all are sorry. When others have tragedys. And help each other. . But confront reality. . Same for every one what race nationality or faith one belong.

  174. My eldest daughter was born the morning of your precious child’s journey to heaven. I read your story and know how you felt and what you go through everyday. My 9 mo old son, Joey, fell ill from an unknown infection and left me the 25th of May this year. He was the youngest, leaving two older sisters behind, Cecelia and Ella. I have also been pregnant with my Rainbow baby, Mary during this new life. Thank you for sharing your story. It does help to read other mothers stories. I always go back to what if I took him to the ER sooner. Yet your story seems to confirm that even taking him sooner it was his time and nothing could change that. So your story brings me much comfort for more reasons than this.

  175. Emily
    As I lay here in bed sobbing uncontrollably. I should be getting ready for school drop off with my eldest girl, she’s 12. Instead I have a sick 4 yr old with a headcold hugging me telling me she’s too sick for preschool. To be honest I don’t care if she doesn’t go. I’m glad I’ve got her to hold. This story of your son x almost mirrors the loss of our 6yr old son. It brought back so many triggers. So many time frame snippets of what we went through with our sons sudden illness and onset of his catastrophic stroke! It was all so eerily familiar. Strikingly the same in terms of even the ambulance ride. I desperately wanted to sit in the back with my son. But I had to sit up front. To lying in bed when our son lay here brain dead. Within 17hrs of him being sick. He was gone…. we are also yet to receive concrete answers 5yrs on! Actually there were a lot of mistakes made in our sons care which lead us to taking one of the hospitals to court and settling outside of court. The entire process was and is still heart crushing and like I’m on a never ending emotional roller coaster that I just can’t seem to get off. Bitterness, anger, hatred even, sadness, they all live side by side in my heart along with love and compassion and care I still have x

    I don’t know what I believe in anymore.

    I don’t even know if god really exists anymore….. but I hold onto hope that Elijah is safe and being looked after by family who have also crossed over into the realms of never never land… there…. where your spirit goes when you pass on from your earth journey x

    What I do know is our son died and we’re left to pick up all the pieces unanswered or not. We will never know what caused Elijah’s stroke. His death. Why we couldn’t save him. All these whys.. …. if I kept thinking like that constantly I reckon I’d soon enough be wrapped up in a Home for the mentally unstable… the whys and what ifs could send me insane…

    Living a life with an eldest daughter who misses her best friend terribly and remembers everything. To having to deal with a 4 yr old who never got to meet her brother but remembers him like he’s never left.

    We talk of Elijah like he’s here. We say his name daily , we remember and recall stories and watch home movies of him in it. We look at photos in family albums. So Elijah’s big sissy and little sissy never ever forget. But that they also love being reminded they still have a sibling. Their brother who is still very much part of this family x forever always.

    I just wanted you to know I’m with you
    I hear you
    I feel you
    I do understand what you went through and are still going through
    I get it

    We will always wonder what our sons
    Could have been
    Should have been
    Deserved to be x

    1. Rebecca,

      I cried. It is 6:21 in Houston.TX now. I miss taking my 10 year-old Victor to school.
      This was sudden, tragic (He was run over riding his bike on our residential street), and I can’t forget the moment were told that hopes were low, he was brain dead. Low or non existent? I wish we had survived, in any way, I would have taken care of him until my last day, but I didn’t want him to leave. I wanted to trade places 🙁 to give him life and I couldn’t. It happened exactly 3 months ago, and I can’t still believe it. I haven’t been able to walk in his room.
      When I got to the corner where it happened he had been already taken to the hospital. It was September 1st, and we came back home on September 7th without him. We donated 5 organs. His heart is beating inside a 5 year old girl. This is tremendous, this is extreme, I feel my heart breaking everyday.
      How long since your son is not with you?
      I understand what you feel although each person has a different grief, but we share the pain and sorrow. I wish we never had to know about all this!

      Did you join grief groups, had therapies, medication?
      On Friday I will have my 4 therapy. No medication. Whole Foods drops anxiety soother and tea. I do not know how I will really be strong enough to live but I have to. We have our daughter, almost 3 who stills talks about Victor. They were very close, she says his name as she plays and she also looks for him everywhere and the few times we have been to other places, she says he is coming back, she wants to safe him, she says she is sad because of her brother. I
      I will preserve memories as much as I can. I need to be more open to talk about him but now it has been hard, I need to make an album with photos soon. Her birthday is coming on December 12, 2020 and my heart is not with any celebration but I want Ella to know that she is loved and important. We might take her to a beautiful place and invite few girls to cut the cake and then come home as now I just want to be home.

      Thank you for reading.
      Luisa.

  176. I am so incredibly sorry for your loss. I was searching for stories about losing children, and yours was the first I came to. I have 3 kids earthside, and 3 in heaven. Two were early miscarriages, and my third I lost last month at 37 weeks 3 days pregnant. They called it a “freak accident”. The cord had wrapped around her neck twice and it was in a knot at birth. The only thing that has been helping is talking with other loss moms, or reading their stories. I want to hear theirs just as much as I want them to hear mine. Her name was Shirley Ella, and she was named after both of our moms who share the same first name. I know our stories are different, and you got to spend much more time with your son than I did my daughter, but we both lost a huge part of ourselves the day we lost our babies. I always hear “at least you have other children, and you can always have more!”. Yes, that’s true, and I’m extremely grateful for those things. Absolutely. But none of my children at home or future babies will ever be Shirley Ella. I love them just as much as I love her, with every inch of my soul, but she will never be replaced. Nothing will ever heal my heart from her loss. I cannot even imagine what’s gone through your mind, not all of it at least. But I commend you for your strength in sharing his story, and I just wanted you to know that if it didn’t help anyone else (which I highly doubt) it helped me tremendously. Just know you have people all over the world thinking of your son’s memory now. 💜 May he rest in peace until you both meet again in heaven.

  177. I am so, so sorry that you and your family had to go through this. I am not even a parent but losing a child is one of my worst nightmares. The fact you have had the courage to even post this is incredible as I know it must have been tough. I am sure Cameron’s soul and spirit is always with you through everything you do. Sending you and your family lots of love and hugs x

  178. I lost my 5 yr old son Alex to menengitis 12 years ago and although I know he is i heaven, I still miss him and sometimes u fear that I won’t make it there to join him

  179. I know your sweet son has been in Heaven more than 3 years. I just wanted to tell you that I found this tonight, and I am so sorry for your loss. I am so thankful that Jesus will make all things right in Heaven forever, and I am so sorry that you don’t have Cameron with you yet. You have inspired me to try harder with my difficult son, so pour more love in while I have time. Thank you. May God richly bless your family with His comfort and peace

  180. Dear Emily, I am reading your story in 2020 and It has brought me to tears. I started praying for you and you beautiful son not even half way they it. You Are for sure a strong person for having the courage of sharing your story and specially so fresh. I am so sorry for your loss. I have lost two babies myself. I miscarriaged Billy at 8w and my daughter Amelia Michelle was stillborn at 21w. I have read a couple of your posts now and I wanted to share with you that the first days, weeks… can’t remember for how long I wanted to die, I wasn’t suicidal I just understood my baby wasn’t here anymore and I wanted to be with Amelia in Heaven. I wanted to die to be with her!!! I know by reading your blog you have Your own personal approach to religion and I respect that but I wanted to share with you that I prayed so hard to God to show me my children in heaven because I miss them so much that just days after Amelia was born I had a clear dream of a field of poppies with rays of sunshine and butterflies. My son Billy looked like a toddler and was sitting on the grass giggling at my daughter while she laughed and chased butterflies running around barefoot and with the wind messing her beautiful light brown hair. She looked like she was 4 or 5 years old. Amy was born 10 inch tall and 10.02 oz but in my dream God shower my my children whole and happy. After I read your story I prayed to God For your son to meet my children and to play together. I don’t know you and this might sound crazy but I love you and I wish you the strength I am wishing for myself to carry on. With life while keeping our children in our hearts forever.

  181. Dear Emily first I wan to say that you are in my thoughts and prayers. I am also a grieving mother. I just lost my 29 year old son Corey who was also my best friend. We have always shared a bond between his older brother him and myself that has always been unbreakable. Until 09 12 2020 when I was delivered the horrific news that Corey was dead by our local sheriff’s department. The officer told his pregnant wife and she told me screaming and crying. I then called his brother who was also devastated as he drove to our house. Corey also left behind his 4 year old son and a baby girl on the way. Due December 29 2020. I have been to say the least destroyed over my loss. I can’t understand why. I am angry and have cursed at God. And I am a Christian for the most part. I am so sad and cry everyday. No matter what the age they are always mama’s baby’s. I just needed to say that I am hurt for you that you were not blessed with as many years as I was. And reading your story made me thankful to God more than I have been. I do have the blessing of his Jr. And the new baby girl to come. And I now see that. Your story has gave me a different way of thinking for this time right now. I pray that time has lessened your pain . I know it will forever be there and you will only not feel it when you are reunited with your baby. But for now I will keep praying for healing for you, me,and all the people who have shared their stories. God bless each of you. And thanks Emily for sharing all of your courage and strength. I’m sure it took you alot to relive that time. It is very much helpful to others and also much appreciated. Your son is hopefully there greeting big grown mama’s boys also cause I’m sure my son could have used some direction from him. I bet he is a healthy happy young boy with lots of courage like his mom. Thanks for sharing Emily,

  182. I m so sorry for you. Found your story because I recently lost my baby at 21 weeks. Every loss is a loss but your story did make me realize lot of things . I can’t imagine your pain! Why some people have to bear this ! I wish everything good comes your way. !

  183. I recently lost my son 3/25/21 he was 11 years old it was a traumatic accident that happened at seal beach. My husband my 4 year old daughter and I witnessed it. He choked and lost his pulse for 50 min. They brought him back but the damage was done to his brain. It was the worst day of my life he was such a smart funny boy. I couldn’t imagine him not being himself anymore playing video games, riding his bike, telling jokes. They did the two state mandated test and he was declared brain dead. It has been unreal and hard everyday waking up and not hearing or seeing him. We never got a chance to say goodbye I wish I could talk to him or hug him one last time.

  184. I lost my 1 year old just this week on memorial day (We Found Out On Memorial Day) and my 6 year old and my husband and me all are under the loss of 1 year little Emma. She died on the night before. She was just playing and got tired and slept. Then, In the morning we took her to the hospital Because she didn’t wake up….That was when I recived the loss of my daughter’s death. I need to say: “Having A Dead Child In Heaven isn’t Easy…But, Your Child Will Be With You…”. I still visit her little playroom we made for her in the future.

  185. Somehow your story showed up in my Facebook feed. Your story…your child…omg…your descriptive writing, I feel like I was in the room with you. My heart literally hurts for you, for your precious son & all that all of you went through, I can barely see the keyboard through my tears. I have 3 children & your story is every parents worst nightmare. I wish there were words of comfort I could offer you but I know there are none. Just know that I am asking God to heal the hearts of all who loved your precious boy. 🙏❤️🙏❤️🙏

  186. Stubbled across this by accident and so glad I did. Your son must be so special- look at all the people he has touched and moved, even years after the tragic event. I can’t help feeling slightly elated by this- his tragedy has opened this flood gate of grief for people. He’s like an angel! You must be so incredibly proud of how much your personal story has enabled others to find some comfort in their darkest moments. His life and purpose obviously continues to shine through the darkest of times therefore his spirit lives on and on xxx

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