Most of you probably know that I have been working with a good friend, Lori, to plan a fundraising event to honor our sons' memories. We started a foundation, the Max and Bo Foundation for Hope, and we're working with a local organization, SIDS Resources, to put on an evening of fundraising that will be fun, but that will also honor the babies already lost to SIDS while raising money for the families who will lose babies to SIDS in the future. I wish that I could say that there won't be any more families that will have to experience what we've gone through, but the reality is that at least three families will lose babies to SIDS every month next year. And probably the year after that, and the year after that. And that's just in the KC Metro area. If you take a second to think about that, it is truly astonishing, and not in a good way. There will be more weeks next year when babies die of SIDS than there will be weeks when babies don't die. We all tend to think of SIDS as something that you just hear about, something that is far removed from you and your loved ones, and something that only happens to other people. That's always how I thought of it. Of course, I knew it was real, but it always held some elusive, not quite personal meaning to me. Now, it's all too personal. I realize also that SIDS isn't the only thing that robs parents of their children. I hope that our foundation can start small, with SIDS families or other families that are referred to us through personal connections, and eventually expand to help families coping with their children's deaths regardless of the cause listed on the death certificate. I know that many people are curious as to what exactly the Max and Bo Foundation for Hope plans to actually do for grieving families, so I'm going to expand on our foundation's mission in this blog post. This post deals with the actual financial costs of losing a child (if you are a regular reader of my blog, then you are well versed in the emotional costs of losing a child by now!), and I suspect that it will open your eyes to some things that you might not have considered before. Please note that while I realize and agree that it is tacky to talk about money, I hope you will see why I find it necessary to do so here.
Many people can imagine the emotional ramifications of losing a child suddenly, but few people consider the financial costs associated with a child's unexpected death. Grieving is, simply put, expensive. Most parents have to rely on others to help with the cost out of necessity. All expecting parents plan for the expense of diapers, clothes, health insurance, etc., but how many plan for the cost of a funeral, obituaries, and burial of their babies? As sad as it is, the money set aside or allocated for caring for a living child is not nearly enough to cover the cost of caring for yourself and your family after a baby dies. As I go through some of the expenses that my family incurred, keep in mind that our expenses were actually less than what other families might pay for several reasons. We were lucky enough (if anything concerning Max's death can be called "lucky") to end up at a funeral home, McGilley's, that does not wish to profit from infant deaths; they reduced their rates substantially for Max's funeral with absolutely no requests from us to do so. We also chose cremation for Max, so we did not pay for a burial plot, the burial itself, a graveside service, or a coffin. I also had pretty good health insurance through work, so my grief counseling was covered at 100%. So, although Max's death was costly for us (in more ways than just financially, obviously), it is much more expensive for other parents who choose to bury their children and then seek professional help to cope with their loss.
The first few days after Max died are very foggy for me. Luckily, my mom is a hospice nurse and knew exactly what to do to get funeral preparations started. I sometimes wonder what other people do. Who do you call to figure out what to do after your child dies??? My mom called some funeral homes, and I believe that Nancy from McGilley's was the first one to either answer or return her call. She was wonderful, but there was no part of planning Max's funeral that was wonderful. I'll never forget how sick to my stomach I felt as I looked through the catalog of urns as Scott and I tried to select the perfect one for our baby son's ashes. At one point, Nancy brought one out that is customarily used for infants' ashes. It looked like a toy. It was tiny, almost like a joke version of a real urn. I honestly felt a little bit offended. And angry. It made me really angry that some company makes a tiny little joke urn (as if to emphasize that the ashes inside of it could only be from a tiny person) and charges $300 for it. It made me angry that grieving parents probably agree to pay that ridiculous amount just to get it over with. Scott and I chose a box instead. It's a beautiful mahogany box that locks and has room for other items inside of it. It's also a ridiculously expensive box. We also had to select flowers and music and way too many other things. It was overwhelming. By the end of our visit, we had racked up $1700 in charges. Keep in mind that the funeral home drastically discounted their prices (I believe we paid $25 for the actual funeral and use of the room). If you were at Max's funeral, you know that it was not an extravagant affair. We didn't have doves flying around the room or memorial cards dipped in gold to hand out to people. It was your normal, run of the mill funeral, and it cost $1700. According to the FTC, the average cost of a funeral is around $6,000. When you add in all of the extras (flowers, thank you cards, etc.), it is not uncommon for a funeral to cost $10,000. I wonder how many new parents have access to that kind of cash??? We certainly didn't.
I've always been a reader of obituaries. I know it sounds morbid, but I feel like it's my way of honoring people's lives. Obituaries tell the stories of people's lives, of the people they loved, the careers they chose, the people who loved them, and the impact that they made on the world. They did all of those things, so the least I can do is take five minutes to read about it. In all my years of reading obituaries, I never paused to consider how much they cost. If you would have asked me, I would have told you I thought they were free. I realize that newspapers have to make money in order to survive, but by charging grieving people to announce to the world that someone that they love dearly has died? Max's obituary wasn't long, but it cost $700. That number still makes me cringe.
It would be negligent of me not to mention that Scott and I didn't pay for any of those things; our parents did. We are lucky to have parents that stepped in to take care of those things (and so many more) for us. Not all families are that lucky. We had just used all of our savings to buy a house, and we had a new baby that we liked to spoil. I have no idea how we would have come up with the money to pay for Max's funeral and obituary. Do funeral homes or newspapers offer financing? Somehow, I'm doubting they do. Most health insurance policies have at least a minimal amount of life insurance built in, which is nice to have when planning a funeral. Unfortunately, most insurance companies won't pay that life insurance amount unless a baby is older than six months when he dies. That seems odd to me. Who decided that life begins at six months? I thought we were still busy debating the whole life begins at conception vs. life begins at birth thing? I realize that I'm wondering off topic, so let me get back on track. Scott and I make a decent living. We live in a nice house in a nice neighborhood, we drive newer cars, and we have extra spending money every month. If we couldn't afford to pay for a funeral, I wonder how people who live paycheck to paycheck would? What if they don't have parents who are able financially to take that burden off of them? What if they don't have parents at all?
Most companies offer three days of paid bereavement leave after the death of a child. Can you imagine going back to work three days after your child unexpectedly died? If a parent needs a little bit longer (who wouldn't???), then they can take unpaid leave, but where does that leave them financially? Trust me, KCPL doesn't stop sending you bills because your child died. Life goes on, and the bills keep coming. It's a horrible position for anyone to be in; it's stressful, and there are very few options for most. It's either: (a) go back to work (as unproductive as you will be); survive financially; and try to put off grieving for later, or (b) don't go back to work, go bankrupt, and add the stress of financial instability and everything that comes along with it to your grief. Neither choice is very desirable, but people have to make decisions like this all the time. We were lucky again in this arena. I was off for the summer and had a little over two months off before I had to go back to work. It was still incredibly difficult. I can't even go into everything that was going on with Scott's job at this time, but let's just say it wasn't a good time for a vacation. Still, Scott was lucky in the sense that he didn't work for a large company with strict time-off policies. He had wonderful friends and colleagues who didn't hesitate to appear on Scott's behalf in courtrooms all across the city, and judges were very generous with continuances and forgiving missed appearances. Because of the help of other people, Scott was able to ease back in to work. There were many days when a few hours at the office was all Scott could do before breaking down and coming home. Some days, he didn't make it to the office at all. Who can blame grieving parents for failing to see the importance of their work when they are busy trying to figure out how to live life without one of the most important things in it? How much time off would be enough for you? I'll be very honest...even after two months off, my job was never the same after Max died. I just didn't care that much about it. I know it sounds horrible, but it's true. I had very little enthusiasm, and I really just forced myself to get things done. The best part of my job was being around my coworkers. It might have gotten better with time, but my heart just wasn't in it any more.
One final cost that families are confronted with after the death of a child is the cost of grieving for that child in healthy, productive ways. Counseling is expensive. A friend of mine who had a stillborn daughter last year recommended a counselor who specializes in child loss to me and spoke so highly of her that I decided I should go see her too. Unfortunately, she didn't accept my insurance, and her hourly rate was either $100 or $150. To give you an idea of how that cost adds up over time, consider this: Scott and I saw a counselor for nearly a year after Max died. If we would have paid just $100 for each session, we would have owed at least $5,000 for counseling alone. I found a counselor that accepted my insurance plan, which paid for 100% of the cost of my visits. Scott and I sought counseling as a couple through Solace House, a wonderful non-profit that provides counseling and support groups for grieving families. Although Solace House provides their services at no cost, they do ask that you make a donation every time you go for counseling. They also have an application process because, as you can imagine, their services are in high demand and they can only offer as much as they have, which isn't a whole lot. Again, we were lucky to find these things and to have good insurance that covered the cost of counseling. One thing that a lot of people don't think about when it comes to counseling is the cost of childcare for surviving children. We had a wonderful friend, Ellen, who picked up Ethan from school every week and hung out with him for free. But, again, most people would struggle to find help like this.
Like I said before, grieving is expensive. Most people need help, and that is exactly what the Max and Bo Foundation for Hope is going to offer: help. We want to help families pay for funerals when they can't afford them, and we want to help families with meals, gas to get to counseling, childcare expenses so that they can attend support groups or counseling sessions, and maybe a bill or two that hasn't gotten paid. These are the things that people shouldn't have to worry about when they are already dealing with everything else that comes along with losing a child unexpectedly. Scott and I were lucky that we had friends and family members who took care of a lot of these things for us, but I know that many people don't have the kind of support system that we were blessed with after Max died. This is why it is so important to us that we raise a lot of money at Harvesting Hope. There are families all over the metro area that need us now, and that number will continue to grow every week. It is so important to me that Max's death be something more than just a tragedy; I want (really, need) it to be something that results in positive things happening. If I can help other families experiencing the pain of losing a child, even in a tiny way, then I think I will have accomplished something wonderful because of Max and his impact on my life.
So, I know that $50 seems like a lot of money. Trust me! I can be a little on the cheap side. But think about it this way: for $50, not only do you get a delicious meal, a chance to win some super sweet auction items, a few drinks, and an opportunity to bust a move on the dance floor (Gangnam Style, anyone???), but you will also know that you are helping a family who will be faced with a horrible, life-changing tragedy.
We have a really great evening planned, and I hope that you all will bless us with your presence!
