The Unseen 'Costs' of Childhood Cancer
There are so many 'costs' of childhood cancer that the outside world never sees. And, as significant as the financial costs are, the costs that I'm referring to are the non-financial ones which are often so much more damaging and, quite honestly, often much harder to 'fix'. While not pleasant, one can declare bankruptcy and wipe the financial slate clean but one can NEVER EVER wipe the emotional slate clean once thrust into this world.
Even more so than with adult cancers, a childhood cancer diagnosis can have a devastating effect on the family. I'm not being melodramatic when I use the word 'devastating'. The diagnosis puts the whole family dynamic out of balance and at risk. Marriages often get strained and sometimes end. Relationships between siblings are often forever changed, with much lying well below the surface. In the tragic cases when a child dies, the situation is even more pronounced. The relationship between the parents and surviving children will never return to the way it was. The dynamic is forever changed. While therapy may be helpful, there's no amount of therapy that can truly address the issues percolating below the surface like the lava deep within a volcano. A diagnosis of childhood cancer changes who we are. The wound of the death of a child never heals. You may learn ways to cope and survive, but beneath the smile for the outside world, there's a pit of sadness underneath. You will never be the same person that you were...but many people expect you to be.
Families deal with many other changes following a diagnosis. How do you know whether the brother or sister acting out is a child misbehaving deserving of correction or a sibling who is hurting from the diagnosis - or death- of his or her sibling? How do you know if your spouse's mood is just 'being in a bad mood' or being in a really bad place for a very good reason and needing your support? I know people will say that this is your "new normal", but simply giving it a label doesn't make life any easier.
Families who have had a diagnosis of childhood cancer will often tell you that they've met incredible people along this 'journey'. And, that's true and a wonderful thing. Personally, I just wish I met all these folks under different circumstances. And, sadly, there are also the "friends" that were close to you and your child pre-cancer who are just not around anymore. That can be hard to deal with.
In some families of kids with cancer, and perhaps more so in those cases where the child has passed away, virtually every interaction among the family is impacted in some way - some small, some big - by the trauma that the family IS facing. Not past tense, but present. It is tremendously naive of people to think that a family can 'get over it' - the 'it' being the diagnosis or death of their child or sibling. When my 86 year old Mother died in 2011, I was very sad and I love her and miss her every day. But, it's not even close to the same feeling I have of losing my 14 year old son.
The regular world goes on...and it has to. I get that. Sometimes, it feels like I'm sitting in my somewhat broken down car on the shoulder of the highway. The cars are flying by at 60+ mph. I sit there for a minute, knowing that someway, somehow, I need to merge this working, but somewhat broken down car, onto the highway. We've got to move forward. We'll get on the highway and do the best we can to stay up with the traffic. I know the other cars have their problems as well...we're not the only ones. From the outside, our car looks fine. But, our car just doesn't run real well anymore. The ride isn't very comfortable and we really feel every bump in the road. But, if I can keep all my family in the car, at least we're together.
Ali & Andrew's Dad/Chris' Husband