I pay very close attention to the googled phrases which bring readers to this particular blog. Some people want information for school reports on the causes of sudden cardiac death in children and in teens. Others are looking for specific information on some of the people we have profiled periodically who have passed from either Sudden Unexplained Death in Childhood, or from a sudden cardiac death of discernible cause on autopsy. The most fragile of the people who come to this blog are those who have lost a child, often recently. They are lost in the world in those moments and are looking for just a hint of how they can possibly go on. I take helping them, if even in a very small way, as a very important task and as a sacred obligation. This is one of the reasons that I run this blog differently than my other blogs. I am not about snaring lots of members to this blog. It is about sharing thoughts, and comforts to those who desperately need this when they log in here. I know that it is a help to many parents, and that this help is very much a living legacy to Daniel.
Now I will get to answering your very good question. How do you move ahead following the loss of a child ? First off, as you already know that at the moment of your child's departure from Earth that your life, your spouses life, and that child's sibling's lives changed forever, in a total and in an inexplicable way. Things will never return to exactly as they were before the pivotal passing of a child. The child is not just missing from the present, but the entire linear progression to his future, and to yours is gone. It can be hard to feel anything but bewilderment. Secondly, the circumstances surrounding the death of a child will impact the character of the grief you feel, and the length of time it will take to navigate the tallest and rockiest cliffs of that early grief. At first, all parents have guilt mixed with their grief. Sometimes, they believe there is a reason for such guilt, but often there is not. There is just the overlay in your feelings that this child who was given to you, was yours to protect, and if she has died, then somehow you dropped the ball. Of course, we can't stand as the body guard to our children (without turning them into some very strange and paranoid people !) We must let them live their lives and make their way in the world as is age appropriate. The world, and even within their own bodies may not always be a safe place. We do our best to protect and to love our children and we all wish for our children to live long lives here, long after we ourselves leave the Earth, but sadly, some of our, no many of our children, here on Earth move ahead to the next life, ahead of us.
For many of us, the guilt comes first. Anger is often easier for us to wallow in, than grief and sorrow, and some of us become absorbed with anger or rage, sometimes directed to someone who is, in some way responsible for part or all of what happened to our child. More often than not, we may blame someone who is in some way related or associated with the passing of our child, but not responsible. Many parents whose children die blame their child's doctor. I was fortunate in that I have very clear recollections of Daniel's last physical, and it was quite detailed. However, neither his physician or I, saw or heard anything worthy of additional exploration. Sometimes, anger is inappropriate, and we have anger for the death of our child, and no one tangible in order to deliver that anger to. When anger passes, many of us descend into an abyss of sorrow which I would not wish on anyone on Earth. ( I would like to say on "my worst enemy" but I don't have one of those.) The abyss is mind and mood altering and leaves us wondering why we did not evaporate along with our child. I would imagine that this is the place that most of you dwell when you are up at night, google one of the subjects I have written about here in the last nearly four years, and then log on. There is no magical prescribed series of activities which lifts this storm.
Grief is an arduous journey, and it's a lot of work. There is no specific prescribed path, and the journey and the activities are different for each of us. In my personal journey, I first needed to make sure that the sudden arrhythmic disorder which had taken Daniel from Earth without a hint, didn't also afflict one of my other three biological children. Following a funeral where we didn't know what the cause of death had been, we moved on to an autopsy, which has continued in multiple cities. Parts of Daniel's body in death have traveled far more than he did in life, an irony which simply leaves me sad. After the electrophysiologic evaluations of my three other terrified children, came the decision that at least one of them would have a cardiac ablation. His other medical issues made that eventuality especially frightening. I was called on to be courageous in the time of life in which I had almost none.
For a long time, I held it together very well for my husband, for my children and for my friends. My friends were devastated enough. How could I make it worse for them, and for Daniel's friends by showing how lost and sorrowful I really was ? I didn't. I developed two basic ways to cope, one of them functional, and one, not so much. In one, I booked myself to be incredibly busy all the time, and always doing something. I don't think I sat calmly enough to as much as drink a cup of tea for three years. I was a flurry of activity. I was a wheel that had to continue to spin. The second way in which I maladapted somewhat was that I realize that I felt that eating properly, or at least attempting to do so, hadn't kept Daniel alive, and so what was the value in it ? I found myself eating not only whatever I wanted, but for some foods, in the portion not only for me, but in the portion for Daniel as well. I realize now that I did not adjust the amount of groceries we bought when he passed. I just ate his portion. In a sense, he was still here. Fortunately, for a long time the hyperactivity of my grief compensated for the poor choices. Eventually though, I gained weight sufficiently to have to diet.
Other things I did to sustain the activity level that my grief brought to me was
1. Collecting all the pictures ever taken of Daniel, and categorizing them, for a large series of scrapbooks.
2. Going through everything that was in his room. Rather than giving away or donating the items, we designed and built the teenager finished basement bedroom on the same level as his brothers, as he always had wanted. His siblings painted realistic clouds on the ceiling which seem to drift as genuine clouds do.
3. I collected all the DVDs and movies he had ever watched, and especially those he loved. This was easier than it sounds as many of them were very reasonable on half.com. Our family spends time in Daniel's room watching his videos and remembering the times we spent together.
4. I started this blog. It was a place in which it is socially acceptable to talk about Daniel and my feelings, whereas in much of the rest of the world, he passed almost four years ago, and people are uncomfortable when I speak of him.
5. I wrote a book about our experience called What I Learned from Daniel.
6. I started an additional blog in order to bring disaster preparedness to people around the world.
7. I wrote an additional book on disaster preparedness, called Rational Preparedness.
8. My normally frugal self bought a small house by a beach out of the country as I was determined to provide a place for my children to go out of the country, as I felt I had failed in taking Daniel to see all the great sights on this Earth while he was here.
9. I had barns and kennels built for Daniel's animals, as a way of honoring all the animals he had loved so much while he was here.
10. I bought two horses, one a Shetland pony very similar to the one Daniel rode on at the Celtic Festivals we used to attend annually, and another who I realize now, looks a lot like the boy on a horse (Daniel) on the weathervane on top of the cupola on one of those barns. Daniel would have loved the horses.
11. I left my job as a college instructor, and I don't know if I will ever be back.
12. We adopted a young teen boy to honor the memory of Daniel and provide a home to a boy who would not have had one. (Daniel had always wanted us to do this.)
And the list continues and is not in order
For each of you, you must find what gives your life and the life of your child meaning. For some of you it may be activities for fundraising for the illness which took your child from you. For others it may be grief work, helping others to deal with whatever personal blueprint for grief exists for them. For others it may be working within the community to try to defuse the type of violence which ended your child's life. Finding our way through our grief is a mammoth personalized journey which each of us must make. There will be days when the tears must fall, and there will be no avoiding them. There will be days when the sweetest of your recollections of your child crystallize into perfect memories ! I remember so much about Daniel now, almost four years after his passing. For almost a year after his passing, I was so grief stricken that I could not access all of our memories together.
As smarter people than I have said. Grief is a journey. We cannot avoid it, got around it, above it, or below it. We must go through it. I chose to be as busy as a one-armed paper hanger to go through the most painful and most acute phases of mine. There is no magical path, no shortcut. I can promise you though that as you move through the storm that is grief, that you become better at navigating this storm in time. For most of us, we began to better function and to begin to derive joy in our lives once again, around the year mark. Until then, it's best not to make any major life decisions, or even to change residences if you can avoid this.
Personal faith in God and in the hereafter helps a great deal in navigating grief. However, we must accept and admit that regardless of how strong our faith in God is, and our faith that we will be reunited with our child at the end of this life, we are still left with a life in which we will not see our child's facial expressions to our words. We will not see his college graduation, his wedding, his children on this Earth. Cultivate your faith however you can. Many of us live with this every day. Know that I pray for you, and your family also.
The Glory- Royal Wood by maplemusicrecordings
(Yes, singing background vocals in this video, is Sarah Slean, who is married to Royal Wood.)