MARCH OF DIMES | MARCH FOR BABIES | NACERSANO

Living my new normal

a letter from a father who lost a child

I had to share this letter my husband wrote.  I think it just describes everything we've been through so well and it gives the point of view of what a father/husband goes through.  He was hesitant at first about me posting it but finally gave me the go ahead.  So here it is:

An open letter from a father who has lost a child
My wife and I lost a 2 week old baby boy in June 2012 to an undetermined neurological condition that probably had some kind of ultra-rare underlying genetic component. We'll never really know for sure, we just know that our son was neurologically unresponsive to the world around him and we had to make the ultimate decision to remove him from life support as his condition began to deteriorate and his other organs began to fail. He never had a chance. This is the story of what that experience has been like thus far. At some point in everyone’s life, you will inevitably encounter someone like me or my family who has lost a child or baby. The loss may have occurred 10 years before you ever met them, or you may be sharing the ’instant moment of grief’ with them as they are experiencing the sudden shock, funeral and the immediate aftermath of recently losing a child. Make no mistake about it, losing a child or baby is absolutely devastating and life changing and not in a good way as you might expect. It’s hard to articulate to others what this experience is like. The old cliché “words can’t describe it” is absolutely true, because we have never quite managed to translate such profound anguish into words in the English language, it would be a word that would be so vulgar and profane that it would hurt your ears and cause you physical pain to hear someone else to even speak it.
I have found myself telling others, that I could explain it to you, but unless you have been through this experience, you can’t fully appreciate what it is like, nor would I want you to. But telling me that you were really sad when your favorite grandparent passed away or that as an adult you lost a parent actually doesn’t help me. It may make you feel like you are connecting to my situation and I have no doubt that your words were well intended and I am sorry for your loss, but it’s not really comparable. Why? Because while losing our grandparents and eventually our parents is sad, it's very sad. Unfortunately, it’s also the natural evolution of things. It’s the circle of life and we come to expect that is how things are supposed to play out in a normal human lifetime. But burying a child causes the circle of life to spin in the wrong direction and come crashing down, it’s completely out of order, it’s not supposed to happen this way but unfortunately for some of us it does happen. It is your worst nightmare come true. Consider this, do you define your life in two parts separated by your grandparent’s funeral? The first part of your life as the good, happy and carefree part before you lost a grandparent and the second part as rebuilding your life after their funeral? Probably not. But that is exactly how a parent who has lost a child views their life. Their lives are never the same afterwards and are now split into a "before" and "after" marked by the death of their child. It redefines who they are.
There are even some people who think that you are supposed to just “get over it” and just get on with life, which is probably more comfortable for them than any real concern for the grieving parent. I only wish it were that easy and that there was a magic pill for that, but there isn't. We are getting on with life to the best of our abilities, but this will always stay with us. The pressure on fathers as men to just “get over it” is even greater than it is for mothers. Men in our society are expected to be stoic, to bury their feelings and put on a mask and go to work. But I still had to go back to work, I have a family to feed, a wife and another son who depend on me. Going back to work was very hard, especially at first. Losing my son shook my confidence in myself and made me question if I could still effectively do my job. It took time, but I was able to gradually to do my job again. I am sure there other fathers out there who were not able to return to work and I do not judge my new brethren, because this situation affects everyone who goes through it differently.   For me working eventually became therapeutic and a diversion from my personal life.
I’ve also had to re-learn how to be a husband and father again. When everything was happening during the short time from his birth until his death, I had to be supportive of my wife through her grieving period and our first born son. Mercifully, my oldest son was only 3 years old at the time we lost his younger brother. He met his brother in the NICU, the only home his brother ever knew during his short time on Earth, but he didn’t really understand what was happening at the time. We have had a number of age appropriate conversations with him, and will continue to do so. His questions like “How many more days does the baby have to stay up in heaven” or “how did the baby fly up to heaven” demonstrate that he was able to maintain most of his innocence throughout this. But I expect even more age appropriate questions as he gets older. It also dawned on me that people will still be asking him when he is in his 80s or 90s if he has any brothers or sisters. It's a normal question in our society, but I wish his answer could be different. I wish he didn't have to learn a hard life lesson at such an early age. I also have to mindful to not spoil my son or hold on to tightly and be overly protective, which seems like a natural response to our situation. My wife on the other hand had carried our son to 37 weeks of pregnancy before our world fell apart, I do believe that the loss for her was even more profound and even more devastating, as one would expect. I found myself having to still do the daily chores of life immediately after our loss, caring for her and a 3 year old. She pointed out that I never truly had the opportunity to fully grieve during that time. So I found myself retreating into myself and my thoughts a lot, until she brought me out of myself. We know what the statistics are for married people who lose a child, and my wife has even had friends comment that their marriage would not have survived losing a child. I knew were going to ok when we took a long walk around a lake by ourselves the night of his funeral and talked. I like to think that our marriage has never been stronger, but the cost was far, far too high.
The hurt never goes away for the parent or family, it’s not something that people just “get over”, it’s something that parents who like myself have to learn to life with everyday of their lives, but in time it does ges easier to live with, but it’s never easy. I think about the son that I never really got to know every single day.  I would love to wake up from this nightmare to a world where things are the way they are supposed to be.   I can tell you that at almost a year and half later, I am doing far better than I ever thought I would in this nightmare of a situation. But it has been a difficult journey and it still is. Some days are better than others. There are also things in everyday life that if you have not been through this situation you'll take for granted but can serve as painful reminders to someone like myself, we like to call them triggers or landmines. For example, babies or practically anything that is baby related are particularly painful reminders. It took me months before I could even be around a baby again, a year before I could even hold one and even then, only for a short time. I still don’t like to be around babies, especially baby boys, newborns or toddlers who would be my son’s current age if he were still alive. It causes me to project too much. At first after it happened, if I was in a store, I couldn’t walk through a baby isle to get another part of the store, I’d take the long way around it. It was too painful. While I can handle that sort of thing now, I still avoid those isles if possible. I also don’t like being in a restaurant seated near a baby or anywhere in close proximity to babies who crying that I can't easily escape from. About a month after I lost my son, I was on the Metro and someone sat down in front of me with a little toddler, who decided to turn and around look at me. I had to get off at the next stop and get on another train. Holidays, especially the first ones have been difficult. Holidays are supposed to be a time of family and reflection and joy. For families who have lost babies, they can be the ultimate reminders of loss. At Christmas time, our mantle should have 4 stockings, instead it just has 3. You begin to wonder if you should put up a fourth stocking or not and we debated that endlessly. What I’ve learned is that there really are no wrong answers to questions like that. Even minor insignificant holidays can serve as painful reminders. Take Halloween, a holiday I used to really enjoy, I’ve had to learn to tune out the tombstone decorations, ghost and skeletons for reasons that should be obvious. It’s no longer the fun holiday it once was for me, but I can still enjoy it, to a certain degree, i just have to turn the volume down.
So what do you say to someone who has lost a child? Everyone who has been in this situation responds differently, but I prefer to talk about it when I want to talk about it, on my terms. That's just me. It’s not a happy memory for me and often times being asked about it feels like I’m being ambushed. I discovered that I have a core group of close family and friends and it doesn’t bother me if they bring it up first, because they were there with us grieving at his funeral. I also found that the further out that circle goes, the more intrusive I find the people on the outer rings questions or comments. I absolutely dread “THE QUESTION” from strangers, which usually is as simple as “how many kids do you have?”. It’s like someone hit me with a jolt of electricity. I find my mind racing and struggling to answer it, it causes anxiety in me and find myself looking to disengage from the conversation as quickly as possible. Because as much as I dread “THE QUESTION”, I really, really dread stupid responses that often follow it even more. I realize the other person meant no harm and they are probably now very uncomfortable. Unfortunately, it’s also very easy to be well intended and end up saying the wrong thing. Telling someone that their baby is in heaven or it was “god’s will” may very well come across as trite and incompassionate, especially if they are struggling with their religion, which happens after losing a child. In my situation, losing my son completely destroyed my faith. I quit praying to a god I’m no longer sure even exists or actually cares about what happens to humans on this earth if he or she does in fact exist. We used to be religious and believe me, we prayed and prayed and prayed and prayed some more when our son was struggling in the NICU. After a deep introspection and re-examination of practically everything in my life, I now find religion to be intellectually dishonest and if you were in this situation, you might too. I respect your right to worship as you please, but please also respect where I'm at and what brought me to this place. Faith is now to me is like a checkbook that is full of checks with no money left in the account, so I'll only take cash instead. I don’t know what happens to someone after they die and neither do you quite frankly, so let’s all just hope for the best. The best thing to say in this situation may be to just listen instead. There is nothing wrong with just saying “I’m sorry for your loss”, it’s simple and it’s powerful. If I am in the mood to talk about it further, I will. If not, that’s probably a que to change the subject. I also dread the uncomfortable akwardness that comes afterwards. I know that when someone is asking me how many children I have, that they never intended to get this response, but if you are an adult and have been around long enough, you shouldn’t be surprised when someone tells you they lost a child. Ask enough people, and this is the answer you'll get. I also dread my son starting school next fall and interacting with the other parents, because "THE QUESTION" is probably going to come up a lot, at least at first anyway. I know that I also need to work on how I handle “THE QUESTION” better and I’m working on it, it's been a big focus for me. Over the past year and a half I became the master at avoiding any kind of social situations, such as parties, where the other attendees don’t know me or my wife well enough and “THE QUESTION” was almost guaranteed to come up in the course of a normal American social gathering. We feel like we are now "those people" and that people probably whisper to each other: "that's the couple that lost a baby, I don't know how they do it." Yep, we are "those people". No matter what happens, I feel like I’m going to be the dark cloud and rain on an otherwise sunny day at someone’s party. Just thinking about going to a social gather actually induces anxiety in me. I am hoping in time this fades, but for now I still hate what I call “uncontrolled social events” and find myself avoiding those. So if you invite me to a get together at your house and I turn you down, this is why. Don't take it too personally.
It’s true what they say about discovering who you can rely on when something tragic happens to you. People in my life who I thought were supportive disappeared, others who I never really thought that we were that close too showed us how awesome and compassionate they were. I suspect some people might be afraid that we are going to drain them emotionally because of our new status as grieving parents. My wife found a great quote, “grief re-writes your address book”. In our case it really did. The only family that I had at our son’s funeral were my parents, on the other hand my wife’s family showed up in droves and were incredibly supportive throughout. I no longer feel like I am a part of my once extended family who couldn’t bother to show up, nor do I want to be part of it anymore. I don’t need nor want superficial sympathy, I’m sorry if it was inconvenient for us to have a funeral on a Saturday when you had other plans and require out of town travel, but losing a baby was exactly a picnic for us.  The people that really matter showed up, that's all that is important.   I've also found that a lot of my male friends can't handle talking about it, even on those very rare occassions I might actually want to talk about it with someone besides my wife. Again sorry if it makes you unconfortable, but if I'm bringing it up, then I consider you to be a good enough friend to talk about it with. I've had a number of friends that seemed to drift away after all of this, so be it. It took me a while to realize it wasn’t my responsibility to make other people feel good in the midst of our tragic situation. If they can’t handle the gravity of the situation and be there for us, that’s their issue not mine. I’m not bitter at anyone, disappointed in some people yes, but moving on.
How does a parent who has lost a child find enjoyment in life? It comes in spurts, much like everyone else athough the amplitude and frequency might be different that it was before.   We actually aren't sad all of the time. Even after losing our son, we’ve even had fun. Not at first of course, but we’ve still managed to enjoy ourselves from time to time. I often wondered how other people perceive us when we smile or they see us enjoying ourselves, I think some people might even think it's disrepectful for us to even smile once in a while, but we do. About 8 months after losing our baby, we went on a planned vacation to Disney World. The trip was planned well before our son was even born with both of them included in the intial plans. I had it in my head that walking through the front gates was going to be hard since we were supposed to be taking two little guys to Disney, not just one. I was wrong, I had tears streaming down my face on the monorail as we were headed in from the parking lot before we even got close to the front gate. I was glad I had on dark sunglasses. My wife knew. But by the time I made to the front gates I was ok. I decided I was going to live in the moment for my oldest son and took a lot of enjoyment just watching him on his first trip to the Magic Kingdom. I also went through a long period of not enjoying anything for myself, I had my job, I was living vicarious through my surviving son and trying to be the best husband I could be under the circumstances, but I had no personal interests. So that has taken the longest to come back. Our grief counselor said it was a sign of depression. I'm still trying to find things that are interesting to me and re-develop some hobbies.
We are still wrestling with a number of issues that come from losing a baby, but not the least of which is how we still fit into this world and relate to other people. So when you encounter someone who has lost a baby or a child, just remember to treat them the way you’d want to be treated with courtesy and compassion if the roles were reversed and please think before saying anything, we are strong people but this is a very deep wound for us and sometimes well meaning words can have a sharp edge to them. Just saying "I'm sorry for your loss" and listening might be all you need to do.

  • Wow what a powerful letter. It is obvious to me that you have a strong husband, what a strong father to be able to put all of those emotions into words.

    Please thank him for sharing that with us, I may have to pass that one to other bereaved parents.

    Leigh

  • Oh NIcole, the courage of your husband to share these intimate words... I'm in awe.  The voice of dads is too frequently silent- and not because they don't have things to say.  Please extend thanks to your husband from I think safe to say every mom who reads this and brings her partner over to read with her and opens channels of communication.

    Deepest thanks,

    Lauren

  • WOW, just wow!  Thank you so much for sharing that with us!  Thank him and give him a big hug!

    Samantha

  • Wow. So many thanks to you and your husband for sharing that with us.  So many times we say men grieve differently, and I think outwardly they often do. But it's clear from your husband's words, that put so beautifully into writing so many of my own feelings, that our husband's are dealing with all the same feelings we face.   I'm not even sure how to say how moved I was by this post.  Thank you again for sharing this.

    Marissa

  • Nicole, Please thank your husband for sharing such a very intimate and powerful letter with all of us. I will be sharing it with Jerry. I think that it will help him to know that he is not alone in his feelings. Many of the emotions your husband describes are things that we have discussed as well. Especially when Jer had to return to work and I didn't. I always felt like it had to be so hard for him to have to face everyone at his office being "the guy who lost a baby". I asked him about it one day and he told me that people lives depended on him being focused and he felt sometimes like if he didn't push her out of his mind he was going to take someone elses child away and that made him feel guilty. It was so difficult for him. Thank you so much for sharing with all of us.

    Jami

  • Nicole, Please thank your husband for sharing such a very intimate and powerful letter with all of us. I will be sharing it with Jerry. I think that it will help him to know that he is not alone in his feelings. Many of the emotions your husband describes are things that we have discussed as well. Especially when Jer had to return to work and I didn't. I always felt like it had to be so hard for him to have to face everyone at his office being "the guy who lost a baby". I asked him about it one day and he told me that people lives depended on him being focused and he felt sometimes like if he didn't push her out of his mind he was going to take someone elses child away and that made him feel guilty. It was so difficult for him. Thank you so much for sharing with all of us.

    Jami

  • Sincere thanks to you and your husband for sharing this.

    I've been so worried about how my husband is coping and I have been struggling to find ways to help (or at least not hinder) him.  This letter may be the opener we needed to get a better understanding of how we each feel.

    Thank you

    Joy