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COPING WITH SUDDEN INFANT DEATH SYNDROME (SIDS) OR LOSS OF A CHILD: My Journey After Losing My Son.

Updated on November 20, 2015

In a matter of hours my world that was overflowing with euphoria was subdued by anger, sorrow, and emptiness. The one thing I loved and valued more than life itself was gone. My happy, healthy, stubborn little boy vanished. Sudden Infant Death Syndrome (SIDS) robbed me of the future I had in front of me.

If you are reading this, either your are doing research because you are preparing for your future, or you are like myself and looking for answers as to how life turned into the seventh level of hell. I was like both readers. During my pregnancy I tried to prepare for everything. I did research on SIDS. I read about how to prevent it; I thought that was enough. Never did I imagine that I would be searching for why it happened to me. The way I researched this before is different than after.

8 months pregnant.
8 months pregnant.

From Heaven to Hell

On December 20th 2011, my son Salvatore was born. He was a lively, aware and healthy baby. He was my reason for living. Fast forward to April 8th 2012. It was Easter, but still a normal Sunday at home. Salvatore was happy, playful, and even propped up on his arms moving his legs as if he was going to crawl. The next morning was like any other morning. We had a morning routine. We got up early so I could spend time with him, he ate, we played, watched HGTV/DIY and then we would go to the nursery on my way to work. There was never a sign of what was to come.

I was running around my jobsite dealing with paperwork when someone came to me and informed me that I needed to go to the emergency room something happened to Salvatore and that he was not breathing. The events that followed between getting the news, a series of phone calls and my co-worker and friend taking my keys from me are all cloudy. I am grateful I had someone who cared enough to not allow me to drive after receiving the news.

My time at the hospital felt like drowning for eternity. If there is a hell on earth, the experience of waiting on your child to die and not being able to do anything about it, is it. As you sit there feeling life escape you as every second passes, you slowly die on the inside and become just a ghost of who you were.

Reality submerged the moment I tried to walk out of that hospital, without my son forever! I checked out of life. I checked out of my relationship with my significant other and best friend, Jason. I was just a hologram of myself as I dragged out of that hospital. I just existed for about two and a half to three years following that.

Salvatore's Room

Loss After Loss

In my early years of college I spent a bit of time in Psychology classes. I learned a lot about coping with life experiences. I knew this was something I could not handle alone and I had to face it. I am an independent woman; however, some things you just cannot handle on your own. I lost two major relationships in this process, my mother, and my boyfriend; however, I did develop additional relationships by allowing people to help. We were all coping with this loss.

An unfortunate truth to a loss this big is that the people that should normally be there for you are dealing with it as well. This is going to put a major strain on these relationships. If there were already underlying issues, expect those to be highlighted no matter how miniscule. Allowing outside help is really going to help those closest through this process. There is no guarantee of these relationships making it no matter how much help.

Moving Nowhere

My employer provided me with two weeks bereavement leave. The first day or two I spent in bed. The days that followed we cleaned, we tried to stay busy so we started working on the garden we had started the weekend before. Jason moved some of Sal’s things to his room. I flew my younger brother out to help support my mother because I did not have the emotional or mental capacity to support her. I was just trying to survive the eradication of who I once was.

My friend had contacted Military One Source to find out what types of benefits were available to me. I was a soldier so Military One Source offers some benefits. These benefits offered me ten counseling sessions. My friends and co-workers did all of this plus so much more without me asking. Honestly, for me, these people were my savior and became family.

I attended counseling twice a week to start and I went back to work after two weeks. I attended counseling for about one year. I found that staying busy was the easiest thing to do. Lying in bed only made me think about it and plunge deeper into my darkness. I managed to continue the college classes I was taking as well.

Getting out of bed every day was hard. Trying to be happy was impossible. I struggled with anger, confusion, and sorrow. Eventually jealousy of others with children set in as well. Every day was a battle. Even now some days are a battle. The days of inner war will lessen as time progresses.

I bought a motorcycle trying to feel just a moment of happiness. I sold a motorcycle when I found out I was pregnant. Even one of the things I absolutely loved to do prior to finding out I was pregnant could not bring feeling to my life. Only time could!

Facing the Hard Road Ahead

If you are trying to cope do not pretend that your child never existed. Is facing them hard? Yes. But it gets easier. I kept the pictures of Salvatore on my phone. I kept the pictures of him on my desk. I even kept the pictures of him around the house. I know from psychology classes that avoidance only makes the issue you refuse to face worse. You’re delaying the inevitable. So I faced it head on every day. I distracted my mind but still faced my hell. My son was the best and worst thing that has ever happened to me in my life. Our children teach us about true love even if we lose them. Some women never get the joy of carrying life within themselves, some carry only to lose that life. I could not imagine carrying a child full term only to have a stillborn child. If you are reading this, and had a stillborn, I am sorry. If you are like myself and dealing with SIDS, focus on the time you got to spend with your child.

If it is recent I know it is hard to focus on these things; however, we are lucky. I got to see my son’s personality; I get to imagine who he might have been. I have four amazing months of memories. Honestly, when my friends with kids share their stories, I share mine, because he was a part of my life. You cannot take a year of your life and erase it.

Additionally, you must find a way to handle the negative feelings within you. Talking to someone might not be enough. I trained in Muay Thai and Jiu Jitsu before hand. This is where I found my solace going through this. It was not about hitting something, although it helps. When you walk into the dojo you have to leave your anger, sorrow, and chaos at the door. You spend time focusing on something else. When you are not focused, you are ineffective. You exhaust yourself and when you leave there is a light feeling of relief. Does it bring them back, no, but it helps. Find what does that for you. Hell, go try it. Maybe just hitting something might help. You have to focus that darkness somewhere before it permanently consumes you or you make a bad decision that ruins your life even more.

When I have to fill out paperwork I ball my eyes out filling out the children part. When I was in the military they forced me to complete this paperwork several times a year despite it only being required once a year. I relive the day of his death every time I fill this paperwork out. Some things will just always be a part of life.

This is not meant to make anyone feel bad or feel like they are doing or going about anything wrong. I want the men and women struggling and the future parents doing research to understand a personal side of SIDS. We all cope with things differently; nonetheless, maybe you do not know what to do, or what your next step is, this is for that person. Even if something I suggest does not work for you, you tried and that is the most important thing. Just keep trying!

This is the start of the garden we were building. Eventually we spent a lot of time here to distract ourselves instead of sitting in bed simmering in our thoughts.
This is the start of the garden we were building. Eventually we spent a lot of time here to distract ourselves instead of sitting in bed simmering in our thoughts.

One Small Step Forward

I’d like to introduce a feeling that is perfectly fine to have. It is nonchalant. Nonchalant might not be happiness but it feels so much better than constantly feeling stark, sullen or torment. This word seems strange in this context but it is a feeling and one that brings relief when submerged in negative feelings for what feels like eternity. My counselor once told me feeling happy is okay. It took me a long time to feel happy. I may have laughed, I may have smiled, but it was not true happiness.

You may wonder how can I ever get past this, how can I ever be happy, how is this fair, and why. You will get past this, you can be happy again, and excuse my language but life is a motherfucker! You have two choices: You give up or work on moving forward. Giving up only hurts you and those around you. Unfortunately the world does not stop when tragedy strikes.

The best advice I received was “ His life ended, not yours.” This is a painful reality to face, maybe something I said seems harsh, but honestly, I am not good at tact. Plus there is no good way to say any of this. This advice, despite hard to accept, stuck with me. Many times it got me through things. It still sticks with me. I try to live for the both of us since he cannot. I made this decision long ago. Honestly, at first I was not really living. I was just being. Only in the last year have I really got back on track and followed through with my decision.

After he died I decided to celebrate his life and not his death. I do not focus on his death day only his birthday. One of my oldest friend’s fiancé lost a child. Every year they do something on the day the child died. The child died in a car accident and not of SIDS so the child was a bit older. Nevertheless, a child lost is the darkest thing a parent can encounter. At the time, I thought how sad that was, and that maybe they were dragging the pain on for longer than they had to. Was it a judgmental thought? Yes, I realize that. I realize that might be their way of coping. However, I know that is not how I want to remember my son. I do not want to relive that day, it is forever engraved in my mind and that is enough for me.

I chose to cremate my son. I originally wanted to spread his ashes around the world. Every time I went somewhere new near or far I would leave a small piece of him there. While I was in Thailand in September 2015 I had started to reconsider this and I have not made a final decision.

When I travel in the U.S. any time I go by car. His urn is strapped in a seat and he goes with me. Is this strange? Well honestly, I do not care. It is part of my way of coping. I chose to cremate him because I am a contractor for the government and I did not know where I was going to end up. So he goes everywhere with me. The spreading his ashes part came later. It was not an immediate thought.

Finding Normal

What was once normal is now a memory; however, you will eventually find a new one. We have to give up fighting to be who we were and figure out who we have become. You will change and that is okay. We just have to try to become the new best person we can be. It is easy to be bitter and angry because moving forward is hard. There is a lack of closure and we will never get it.

It took me a long time to find a new normal. Sometimes that part of my life feels like a dream. I am not married, my children status is inactive, and I currently live and work in the United Arab Emirates (UAE). I spend time with my friends who mostly are married with children. I train in Muay Thai and Jiu Jitsu almost daily. This is my current normal. I still have my son’s pictures on my phone. I still face him every day.

I waited almost a year for the autopsy. My answer: They found nothing.

This is after a night of training jiu jitsu. It is where I relieve stress.
This is after a night of training jiu jitsu. It is where I relieve stress.

Clearer Skies

Within the last eight months I have truly opened to the idea of getting into a long-term relationship. For a long time I thought my mind was right but it took an unhealthy relationship and friendship for me to realize I was still not in my right mind. I was blinded by the distraction of these unhealthy relationships from the darkness of my reality.

All of this was a part of my healing process. In August a friend of mine was at my house. I was playing with their toddler. And as I stood there staring down at this sweet smiling face I realized I am ready to have more kids. This is just a personal thing, your desire will come at your time, or it will just happen and you will move forward. Over the past year my baby fever has been chaotic because of hormones but my mind says otherwise; however, in that instant gazing upon his face my mind changed. You may choose to never try again, but do not let this loss discourage you. Time will likely change this feeling. The fear of it happening again is natural.

If you are coping with this yourself, I am sorry to make you relive this; if you are a future parent, these words could never truly match an experience I hope you never have to endure. It has taken me a long time to not only cope but also to find a new normal.

It has been three and a half years since his passing. Here is what I believe. I was the best mother I could be and there was nothing I could do to change this. And it is no one’s fault.

Finding happiness is a long hard journey and it is worth the crusade!

Possible Prevention

I learned about the Snuza, Levana, and Angelcare after his passing. Despite the timeline I learned about these, I still know I did my best. The Snuza and Levana have a proactive option that will vibrate to attempt to get the baby to move again within seconds of identifying the baby is not moving or moving weakly. Additionally, Snuza and Levana are portable. There are also options like Angelcare, which is a mat that goes on the bed.

In all my research before hand, not a single one of these monitors came up when searching SIDS. Only after, with the different types of research did they come up. I do not know if these would have saved him; even if he had one on, there is no guarantee he would have ever breathed on his own again. Maybe it would have saved his life. On the reverse his brain may have never switch back on. Holding on to what ifs only tortures you more.

If you are a future parent, buy one! Regardless of the Internet saying it is a false safety, at least if your child stops breathing you will have that alarm. It is better to buy a monitor and not need it, then know about it and regret not buying it.

You want to know first hand about if these alarms go off, look up Owls Nest Nursery and Preschool in Ardmore Alabama. I donated six of the Snuza Hero’s to the owner, Trixie Coley and former nursery of my son. The owner told me about forgetting to turn one off after removing it from a baby. She said within a matter of seconds of removing it from the baby the alarm was going off because it sensed no movement.

As I said before, there is no guarantee the monitor will save your babies life; however, as a future parent, now that you know these types of monitors exist you can at least have one more preventative measure in place. The sound and video monitors do not sense movement the way these other monitors do.

I chose the Snuza Hero because it is proactive. I encourage you to do your own research when choosing a monitor. There are likely more on the market since I purchased these.

Choosing a Counselor

I am going to be honest about my religious stance. My upbringing put a very big strain on my belief system. I was raised catholic; however, there is a great deal of darkness in my past that weighed greatly on this. This possibly influenced my choice on a counselor. For my personal needs, I need someone that was not going to over flow me with religious direction.

I had a difficult time understanding how an abusive parent can have their baby. Yet, God took away mine. I believe I was a good selfless parent to my son. Two weeks after I lost my son there was a news story about a woman that shook her baby to death because it was inconveniently crying while she was playing Farmville. When you lose a child as a good parent and see this, this type of questioning can be normal depending on you. If you have it, just know it is not only you.

I only am telling you this because I want you to see a side. It is just my side. If you are extremely religious and see this differently that is fine. In my personal experience when people kept telling me things happen for a reason, god has a plan, god knew he was special so he took him and put him with the angels, I honestly just wanted to punch that person in the face multiple times. No words can bring relief especially when they involve watching your flesh and blood die. For those of you that have never held your child’s motionless and cold body in your arms, you have no idea, and I hope you never find out.

How you feel and your counselors approach is going to be huge. My first counselor was extremely religious and tried justifying it on those terms. I decided to change counselors. It is not always going to be easy finding a counselor that truly understands. Honestly, only someone that went through it will understand. It is possible to find a counselor that meets your emotional needs. It is okay to try more than one. Just keep going. Go to five if you have to.

Do not get discouraged if you do not like the first one. It is all about your comfort. Religion may be what helps you. Only you can decide that. Try different things and see what works.

The most important thing is that you try and let people help. If you cannot afford counseling find a friend that can be objective and listen. I used both a counselor and friends. If you cannot afford a counselor you may be able to find free counseling. Your friends and family will be a big part of this healing process. On that same note, keep in mind those that are closest to you just lost that child too. A person you would normally depend on in hard times will possibly not be there when you need them most.

1-800-273-TALK (8255)

Life Insurance

The last thing a parent thinks of when they are preparing for a baby or child is life insurance. I was the same, never thought about it. I was lucky in a sense because Salvatore was automatically covered by my existing life insurance. We all want to believe it will not happen to us. Get enough of a policy to cover six months worth of bills. Just in case you or your other children cannot handle things the way I did, there is enough money to sustain without losing everything.

Conclusion

My world is not what it was before. I still have days where I struggle but they are far and few between. Salvatore will always be a part of me and that is okay. In time you will grow, find a new normal, pleasures in life, and you may even decide to have more children.

Remember, we will forever have darkness within us and in time you can learn to make that darkness smaller. As you go through this time accept the help that is offered, find a way to stay busy, and look purgatory in the face and fight! There are times where you will want to quit, DO NOT QUIT! The war that was once futile will slowly but surely become manageable.

My Son

This is the day before he passed.
This is the day before he passed.

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