Family / Kids / Parenting / SIDS

Losing a Child to SIDS: My Brother’s Story

christian 5

On December 31, 2006 I became an Auntie; I was ELATED. Three short months later, in a fashion I would never have imagined in a million years, my family and I would be encircling a bassinet in a cemetery. I had no idea Sudden Infant Death Syndrome (SIDS) was a first-world reality, until it unexpectedly took my sweet nephew one cold day in April.

If you aren’t pregnant and don’t have any kids, you’ve probably never thought about SIDS; I hadn’t. When I heard words like “infant mortality,” I automatically associated such a travesty with remote, rural villages in the furthest outreaches of Africa or Mongolia or Papua New Guinea. Babies don’t die for no reason in America.

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This Thursday (April 10), it will have been seven years since Christian passed away. Each year on his birthday, and again on the day of his death, my family struggles to cope with how best to remember his sweet, but far too short life. As I’ve thought about Christian the last few weeks, I realized I desperately wanted to tell his story. I want people to know that SIDS is real, the effects it has on families are devastating, that these babies and their families are more than numbers and statistics. But how could I do justice to this story? It’s not mine to tell. As soul-crushing as the news of Christian’s death was to me, it has affected no one more profoundly than it did my brother.

Even though we haven’t lived together in over a decade, I still consider my brother my best friend. He is the strongest person I have ever met. He has faced and overcame more in his short life than many people have in twice as many years. Not only has he managed to survive such a tragic loss, he has done it with grace, and with his faith in God intact. Here’s his story, in his own words:


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By Aaron Robinson

SIDS or (Sudden Infant Death Syndrome) is more common than people realize.  It is every parent’s worst nightmare.  Picture that one minute you are watching your baby laugh, play, talk gibberish, and the next they are gone from this world forever—all in the blink of an eye.  According to data from the Centers for Disease Control and Prevention, 2,063 babies died in 2010 from SIDS. Even though “Back to Sleep” efforts helped to cut the SIDS rate by more than half since 1994, in 2013 SIDS was the leading cause of death among U.S. infants aged 1 month to 1 year, with 2,300 cases occurring annually according to the Washington Post.  What is SIDS? How does one get it?  Is it contagious? What preventative measures can I do to have peace of mind for my family? What symptoms do these babies with SIDS have before they pass on?  These are the most common questions people ask when it comes to this topic.  Fortunately, there are a few questions that can be explained, but I warn you that this isn’t going to be your typical fairy tale ending.

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I myself know firsthand how devastating and real SIDS is.  On April 10th, 2007 my 3 and a half month old son Christian died out of the blue right under my nose.  He was a perfectly healthy baby that had a smile that could brighten the darkest room.  He was just starting to talk (Gibberish of course), he was beginning to crawl and even lift his head up high.  His results from his two month checkup after his shots came back great.  The doctors said he was a perfectly healthy baby.  Knowing his health a month and a half prior to his death made this situation even more frustrating.  How could the doctors not know that he had some kind of illness during all of the testing?  Well, Sudden Infant Death Syndrome (SIDS) is also known as “Cot Death” or “Crib Death,” and is the sudden death of an infant that is not predicted by medical history, and remains unexplained after a thorough forensic autopsy and detailed death scene investigation. There was absolutely no way the doctors could have known that Christian had this condition.  He was a healthy baby with NO symptoms of any illness whatsoever.

I remember the day he died like a horror movie that has embedded itself into my mind.  Christian woke up early around 7:30am.  My wife at the time had already left for work, so I had to care for him before I had to go back to another night shift.  I fed him and held him on our couch in the living room. I would talk and laugh with him until he got sleepy.  I set him down in his rocker for a bit around 10:30am/11ish.  He was pretty fussy and couldn’t seem to fall asleep completely, so I took him upstairs for a bath to calm him down.  After his bath I fed him again and sat with him on the couch.  After a few hours of holding him, he fell asleep in my arms.  I slowly took him up to his room and laid him down in his crib (on his back).  I cleaned up the kitchen and got ready for my shift, which took me less than an hour to do.  I noticed I hadn’t heard any noises coming from Christian’s room; usually I could hear him rolling around or even making some kind of noise.  I went upstairs to check on him, and when I walked in I noticed that he was face down in the middle of his crib.  At first glance I didn’t think too much of it, since he rolled himself over all the time.  But when I touched him, he was stiff as a board, and a chill like I have never felt before jolted through my entire body.  When I turned him over his face was purple and blue.  I will never get that horrifying image out of my head.  I have never even seen a dead body before, and the first one I saw was my own son.  I screamed and panicked like never before.  I immediately called my wife, frantic.  All I could say was his name over and over.  She immediately was distressed saying, “What’s wrong with Christian!?”  I couldn’t get any of the words out since they were all replaced by my cries and screams.  I finally got the words out and said “He’s gone…..Christians Dead!”   I called 911 immediately after I called my wife.  I began pacing back and forth in the room saying his name over and over.  I tried to be clear with the operator, but words can’t even describe the emotions I was feeling at that moment.  The ambulance arrived on scene within two minutes of my call.  We were originally told that the paramedics revived our son, but we later found out that he was DOA.  My wife and I were then both questioned separately by two Office of Special Investigations (OSI) officers.  Long story short, they were playing the “good cop, bad cop” routine with me for a bit, which I could not deal with considering my son dropped dead for no apparent reason.  After hours in the hospital, we had to go back to our house to gather some belongings.  When we arrived, it looked like a crime scene from a television show.  There was yellow tape around our entire house with people walking in and out of it with kits and clipboards in hand.  I couldn’t believe that all of this was happening.  I just thought to myself “I know bad things have happened to other people, but why me!?  Why us?”

The hardest part that followed Christians passing, was not knowing the cause of death for six months.  For six long months, I blamed myself. I played the events that happened that day in my head over and over again to the point where I’d drive myself to near insanity.  I kept saying “If I would have just kept him in my arms, or left him in his rocker, or just didn’t let him out of my sight he’d still be alive….” My wife and I had two completely different ways of coping with our loss, which made things that much harder to cope.  I am a very affectionate, outgoing, and social person.  I wanted to talk about the situation and release all of my pain and suffering. Whereas she shut down, and was in denial about what had happened.  She bottled her emotions and kept them in.  Even mentioning his name was forbidden in our house.  All I wanted was to be able to vent to my wife about everything, but I had to resort to talking with family, friends, and even complete strangers.  Don’t get me wrong, it was nice having them there for me, but they couldn’t understand what I was truly going through.  I had even gotten to the point of wanting to commit suicide.

My lowest point was sitting alone in our computer room with a butcher’s knife in hand.  I kept asking God why he would bring a child into this world and take it away so soon.  I felt like God hated and punished me for not being a good person. With the knife against my left wrist, I began to press.  Tears were flooding down my face while I kept telling Christian how sorry I was that I had failed him.  Just before I planned driving the knife into my wrist and dragging it down my arm, I heard a voice yell out “NO!”  I know it sounds crazy, but I am not making this up.  I dropped the knife and knew this was not the way to go about the situation no matter how bad I was hurting.  All this would do was cause even more pain and suffering for others who cared for me.

After what felt like an eternity of waiting for some kind of news, the funeral home called and told us they had received the death certificate.  The woman on the phone kept apologizing and said “They have done every test known to man, and they could not find anything at all, so they determined that he died of SIDS”.  I had no idea what she was talking about, but she went into more detail about it when we arrived at the funeral home.  I felt like a ton of weight was removed off of my shoulders.  I finally got closure, and part of me could finally snap out of the slump of blaming myself for his death.  It was simply out of my control.  It didn’t change the fact that he was gone, but at least I didn’t have to keep blaming myself for it anymore.  We donated thousands of dollars to the CJ Foundation for SIDS research and bought bracelets to give to people for SIDS awareness.  My wife and I also bought SIDS T-Shirts to help promote awareness.

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We learned that a combination of physical and sleep environmental factors make an infant more vulnerable to SIDS.  Some Physical Factors include:

  • Brain abnormalities-The portion of the infant’s brain that controls breathing and arousal from sleep isn’t working properly.
  •  Low birth weight –Premature infants are at risk of not having a fully matured brain, which means they have less control of their breathing and heart rate.
  • Respiratory infections-In some cases (Not in my case) many infants had a cold, which caused the infant to have breathing problems.

Some Sleep Environmental Factors include:

  • Sleeping on stomach or side-Placing infants in this manner may cause them to have more difficulty breathing than if they were placed on their backs.
  • Sleeping on a soft surface-This can block the infant’s airway; always avoid placing the infant face down, on a water bed or even a fluffy comforter.
  • Sleeping with parents-The risk increases when an infant sleeps in the same bed with parents due to the increased amount of soft surfaces to impair breathing; however, the risk of SIDS is lowered if the infant is sleeping in the same room as the parents.

SIDS is more commonly found in males, age 2-3months old (90% are under 6 months old).  African Americans, American Indians, and Eskimo infants are found to be at higher risk, but SIDS occurs in all races and both genders.  It has also been found that babies who have had siblings or cousins that have died of SIDS are at higher risk of being susceptible to it as well (Not in my case.  There has been no one in my immediate family that has died of SIDS except my son).

Maternal risk Factors Include:

  • Young Mother under 20 years
  • Smokes Cigarettes
  • Drug or alcohol use
  • Inadequate parental care

Currently, there is no known way to completely prevent SIDS, but only preventative measures to reduce the risk. The best things to do are to always put your infant on his/her back. Don’t sleep with your infant in the same bed. I also recommend purchasing the Snuza Breathing Monitor (Courtesy of raddestmom.com).  The monitor works by a small clip that goes right on the baby’s diaper and vibrates if the monitor detects shallow/slow/no breathing for 15 seconds.  If the monitor has to vibrate to wake the infant, the monitor will flash a red light to notify you.  If it happens three times, the alarm will go off to further notify you until you turn it off.  Until there is a guaranteed answer to what really causes SIDS, I will always be skeptical.  I’ve seen so many cases that were very similar to mine, where our kids were completely healthy and we did everything right, but they still died.  I have come to terms with and firmly believe that it was his time to be with God.  He is in a better place now, and I will be reunited with him one day.

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References:

“Sudden Infant Death Syndrom”, By Mayo Clinic Staff; www.mayoclinic.org

“Rethinking SIDS: Many Deaths, No Longer a Mystery”, by Andrea HSU; www.npr.org

“How many infants die from SIDS or are at risk for SIDS”, Eunice Kennedy Shriver National Institute of Child Health and Human Development ; www.nichd.nih.gov

“SIDS rate has declined but 2,300 US. Babies still die annually”, by Kendall Powell; www.thewashingtonpost.com

CJ Foundation For SIDS Research; www.cjsids.org

“SIDS Prevention Monitor”, www.raddestmom.com

 

 

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37 thoughts on “Losing a Child to SIDS: My Brother’s Story

  1. I lost my baby boy, Jackson, in September and I can definitely relate. I found him not breathing at the end of a nap. He was born small but we were told he was super healthy. He had seen his pediatrician the day before and got a clean bill of health and went down for a nap the next day to not wake up. I tried infant cpr and he didn’t respond. My husband and I are not in a good place right now at all. Jackson was our beautiful, intelligent little man and now we don’t have him. Does anyone have any advice for how to deal with this? The pressure from certain people on top of the pressure we put on ourselves is so overwhelming.

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    • Jessica I am so sorry to hear about the loss of your baby boy Jackson–words just can’t even express. Christian would have been 9 last month, and while I know my brother will never get over the loss of his son, time and faith have made it easier to bear. While I won’t even presume to say I understand his grief or your grief, I know that in time he has found a way to be happy again while still living with those memories, the good and the bad; please know that you will make it through the grief, that it does get easier, and that you will always love and miss and remember him, but you WILL be happy again. My brother doesn’t get notifications from comments on the blog, but he would be MORE than happy to talk with you and offer his thoughts/support if you’d be interested. Let me know, you can PM me at askwordygertie@gmail.com. Thank you for sharing your story

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  3. My daughter passed away 1 month ago. My wife found our daughter face down in the bed. I tried cpr but she didn’t come back. We are going through so much pain, guilt and anger. We blame ourselves for our daughters passing. We didn’t keep her safe. After reading your story I felt like my daughters passing may not be our fault. I felt since my daughter was found face down, yet we alway put her to sleep on her back, it was our fault she passed away because we should have checked on her more frequently. Your story is similar to ours and made me realize infants flip over and are unable to get themselves back around.

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    • Al, what a heartbreaking experience. I am so so sorry to hear about the loss of your daughter. I hope you know that it’s NOT your fault! Even the guidelines that doctors give to reduce SIDS (no blankets, bumper pads, back to sleep, etc.) are only that…*guidelines*. SIDS rates have dropped by half since these recommendations, but there are still babies that die from SIDS even when parents follow all of the guidelines EXACTLY. The worst thing you could do is blame yourselves! I will have my brother contact you, but please know we wish you love and healing!

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  4. I have realized that SIDS has been around over 20 years because my sibling Christopher died while sleeping in his crib,he was only a week old,he was a very healthy baby.

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  5. I have realized that SIDS has been around for 20 years.20 years ago my older sibling died in his sleep while in his crib.He was only one week old.

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    • Sariphine, I am so sorry to hear about the loss of your brother. One of the main reasons I’m so grateful to my brother for sharing his story is it has helped to raise so much awareness about and increased people’s understanding of SIDS. I appreciate you taking the time to read and comment!

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  6. My son, Jake Douglas passed away at the age of 5 1/2 months…it has been over 20 years, but i have decided to post a song “Nolan’s Song” that was written for a family, whom also lost their son, Nolan, to SIDS…Jim Gibson wrote and performed the song at a SIDS benefit for Nolan in San Jose, CA..Jim gave me a copy of the song, which I am posting here, in hopes it will help with the healing for other parents and families impacted by SIDS!

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    • That was such a beautiful song! Thank you so much for sharing it with everyone, I REALLY appreciated it. I’m so sorry for your loss, but I know others will be blessed by hearing your story

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      • No problem…I had read your brother’s write up on your blog…and it was very similar to my circumstances, except my son died at his daycare in the afternoon, i had dropped him off there in the morning..I always thought i was ‘spared’ slightly because i was not the one that found him passed away, i don’t know if I could have handled it..

        My hope is that this song really gets out to people like you and your brother and the rest of the SIDS community for helping to heal…thanks for maintaining a great blog for people to share ideas and stories!

        God Speed

        Doug

        Liked by 1 person

  7. I’m so sorry for you and your brithers loss, what a beautiful baby boy! My name is mirabel, I’m 21 years old and I lost my beautiful daughter to SIDS 2 and a half months ago. Everyone who met her was absolutely in love with her and she was such a happy baby. The first few weeks were so raw that it became harder after that initial shock because it felt like one long nightmare that i was waiting to end and once it sunk in more and the initial shock begun to wear off I fell deeper and deeper into depression. I’m doing a little better now and my grief definitely comes in waves. I still think about her constantly. It’s been hard to stay in touch with my friends as they are all far away in college and, as loving as they are , don’t really know what to say … Nor should they . My boyfriend and I are restoring a VW camper bus and heading out from Massachusetts on a cross country trip in late March to honor her life and spend some time healing together. I have already set up some meetings with other mothers across the states who have been through this and was wondering if your brother might be up for a visit, to grab lunch and talk or something . Your brother seems really strong and I know boyfriend could really use another father to talk to . Thanks so much

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    • Mirabel, thank you so much for sharing your story! I am so sorry to hear about the loss of your baby girl, it breaks my heart. From what I know of my brother’s experience, the loss never goes away, but the grief does get less with time–please hang in there and know that there ARE people who understand what you are going through. My brother will always miss his son, but he is newly married, has a loving family, and is truly happy! My brother would love to talk with you and your boyfriend, he is so super social and easy to talk to. You can private message me your contact information via the wordygertie facebook page. I wish you safe travels on your trip, I’m sure it will bring you much needed comfort!

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    • We lost our daughter to aids 1 month ago. We are going through so much pain and guilt.

      If your ever in our way during your road trip let me know. We would like to meet up and talk. We live in north San Jose California

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  8. Hi, Im 22 and i have 6 year old twin boys. As i read this, tears were coming down my face. I cant imagine losing my children. The death of a child is theworst thing that can happen to two loving parents. I want to thank you and your brother for sharing your story. And i admire you, your brother, and your brothers wife for the courage you guys had to share this story. I know you didnt have to share this story, but im glad you did, that way other parents can also read this and become more aware of SIDS.

    Liked by 1 person

    • Thank you! I agree, I don’t think there’s anything more tragic than the loss of a child. I’m also grateful my brother was willing to share his story. As hard as it was, I know it’s had an impact on so many people. Thanks for reading and commenting!

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  9. R.i.P. Gabriella Doreen-Marie Maloney 10/21/08-1/23/09

    Hi, i also had my baby girl die of sids. I notice your brother said it was christians time to be with god. We adopted the belief that our angel was too good for earth. It was absolutely amazing how one person can bring so many people together. Even tho me and my wifes families dont see eye to eye, when it came to Gabriella everyone threw all their BS out the window. It was very difficult to find any reason why this would happen to us. We were doing good for ourselves so we could do good for our baby. We changed so much and dropped bad habits, and really made the decision to make this babies life the most important thing to us and everyone around us. So when Gabriella passed, and all of a sudden that powrrful unifying force that brought all these people together, and caused positive change in people that embraced it and needed it, was no longer. Everyone grieved and me and my wife went down a self destructive path to try and numb ourselves from the infinite pain that we felt. i also was on the brink of suicide i broke into my apt because i lossed my key i broke my window and ran my bath water and got in with my knife to cut my wrist and bleed out. i started ti break skin and bleed out and lose counciousness all while at this time my front door is being kicked in. well soneone had called the cops because they thought someone broke in my apt. they sent the dog in the house, and kicked in the bathroom and found me in a watery blood colored pool of near death. they saved me and i was admitted 51/50 then 52/50.. well to make a long story short. today i am doing fine, i really feel like writing a book on the experience. i did a couple yrs in prison, problems with addiction, the whole.nine. i really feel now that she was too good for earth, the lord saw an angel and what she could do for us, imagine what she could do as angel touching the lives of a lot more people. not a day that goes by i dont think about her, we had her crenated and we have each have tear drop necklace pendants with some of her ashes in them so a piece of her is always with us. i feel fir your brother. i really do. this is the first sids related post on any website i have ever commented on. thank you

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    • Sean thank you so much for sharing your story–I’m SO sorry to hear about your sweet baby girl. Christian did the same for our family; he brought us closer together and I know my brother made so many positive changes in his life after he was born. Like you, I know he struggled with how to move on and find meaning after Christian passed–you can’t just un-become a parent! I can’t imagine what you guys have gone through, but I was truly inspired by your story and strength. I’m so glad to hear you’re doing well, and I know it’s a comfort for those who have lost children to hear that other people have survived and pressed forward while still remembering the babies they lost. I hope you will write a book about your experience, you’ll touch so many people!

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  10. i’m so sorry for your lost…i’m only 12, so i dont know what its like to be a mother,(or a auntie) but i do know what it feels like to loss someone. (i lost one of my closest cousins) i just wanted to tell you no matter how much you miss him he’ll always be with you, like i think my cousin is with me!!!!!!!! Again sorry.

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    • Charley you are so sweet, thank you for taking the time to comment! I’m so sorry to hear about your loss as well–it doesn’t matter how old you are or who it is, it’s so hard losing someone that’s close to you. I agree that he will always be with us 🙂 Your kind words mean a lot!

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  11. so sorry for your loss… i’m only 12, so i don’t know what is feels liketo be a mother, but i know what it feels like to loss someone imporant. (i lost a cousin i was very close to) again i’m sorry!!!

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  12. My son is 6 weeks old and I’m literally crying as I read this. SIDS is my worst night mare. Their are times I can’t sleep because I’m up all night making sure he is breathing. I am so so so sorry for the loss of your son I can’t even fathom the pain of loosing your sweet boy. You are truly a strong person !

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    • My brother is one of the strongest people I know! As a mom of a two year old, I still will peek in his room before I go to bed just to check on him. I think these are totally normal anxieties for every parent. What I’ve learned from my brother’s experience is that we have to do everything we can to protect our babies, enjoy each precious moment with them, and recognize that all of our lives are in the Lord’s hands! Thank you so much for reading and commenting, and congratulations on your new babe!

      Like

  13. Pingback: Lessons From Grandma | Wordy Gertie

  14. God bless your faith in him. As a grandmother the thought of SIDS is a chilling nightmare! I have attended a friends grand child’s funeral SIDS took this baby at six weeks never have I witness such raw pain in the face of young parents

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  15. Stephanie-I am so sorry that happened to you & your family. I know exactly how you feel & what you are going through. For me, after my son passed, I had a very difficult time believing in God. I couldn’t even Fathem why he’d bless me with so much happiness, just to be ripped away from me 3 and a half months later. After a few years had passed, I got really into the Christian faith, got baptized and surrendered myself to Christ. You know as well as I do there isn’t a day that goes by that you don’t think about your child. During those times, or anytime for that matter, just go somewhere quiet and speak with God. Let everything you feel out! I know in my heart, our sons are up in Heaven & are happier than they could ever be here on earth. God will never give us anything we can’t handle with our faith in him.

    I also used to worry about the thought of having more children & having the same thing happen. I used to tell myself, I couldn’t make it through life if it happened to me again. We can’t spend our lives worrying about it. We are all going to die someday, but we don’t wake up everyday worring if today is going to be the day we die. God has a plan for all of us, and for whatever reason, our sons were called to Heaven early. I know it will be in the back of my head when my wife & I have a child, but I am more knowledgeable on the subject & can take steps to reduce the chance of that happening again. I will be getting montitors & probably keep a very close eye on my baby until he/she is out of that critical age for SIDS.

    Just know, that there was absolutely nothing you or your husband did wrong. I know I blamed myself for a long time always saying I could have done more to prevent this from happening. No matter what precautions I would have taken, I believe it was his time.

    I hope that I could help answer your question. If you ever want to just talk, feel free to call or text me. I’m a talker & talking about it always makes me feel better (Especially with people who have gone through what we have).

    Aaron Robinson
    (951)808-7259

    I’ll pray for you & your family

    God Bless

    Liked by 1 person

  16. My 4th son died of sids 7 yrs ago, he was 2wks old…it was horrible and still is. I worry all the time about my other kids. Since he died we have had another daughter…she is 5. Nothing is normal or no big deal any more. I just can’t get past losing another one of my kids. I am so scared something else will happen. I don’t want to be this way. I want to trust in God but I am so afraid! How can I stop worrying?

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    • Stephanie, I am SO SO SO sorry about the loss of your son. I can’t even imagine the heartache you endured and are continuing to feel. I asked my brother to respond to you personally because he understands and empathizes with you in a way that I can’t–his reply is above your comment; I get so much strength from him.

      I did find a blog (http://www.thebettermom.com/2012/05/30/every-mothers-nightmare-why-losing-a-child-isnt-something-you-should-fear/) written by a mother who lost her young child, and she talks about the fear that you are feeling; she acknowledges the fear but is very hopeful; the comments are also very supportive and are from parents going through the same thing–you’re not alone! I know that faith in God can help to sustain us even during the worst of times. I also believe the Lord doesn’t give us more than we can handle, and even though we go through things that feel completely unbearable, He has the ability to strengthen us and to help us feel peace.

      We’ll be praying for your sweet family as well!

      Like

  17. I read this a few days ago and wanted to comment, but I can’t find the right thing to say. Sometimes words just aren’t enough. But I want you to know I shared in your sorrow as I read your experience. Thank you for opening up and sharing little Christian’s life with us. I pray you find healing and peace.

    Like

    • Thank you so much for your sweet words! I think words can always be enough 🙂 To hear that someone is willing to sympathize and empathize with you can make all the difference. THANK YOU!

      Like

  18. It’s taken me two attempts to read this. He was such a beautiful baby boy. Thank you for sharing your wisdom, I am certainly going to buy a movement monitor for our little one x

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  19. Thanks for sharing this story. I remember talking to you about the when my nephew passed away from SIDS later that same year. I had never heard of it either. The more awareness parents can have, the better… I know it can’t cut the risk to zero, but hopefully they’ll know what it is before it’s too late.

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    • Hey girl, I totally agree with you–I think the best thing we can do is share the real story of how families are affected by SIDS. It’s so reassuring that we can all be a support for one another. I hope you and your family are doing well!

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