This, there are so many people out there in Kids' Cancerville - the residents are so much more eloquent in their thoughts than I - I constantly reading about some other parent/child/family's journey and the words are the words I wish I had concieved in writing about ours', Sam's and Bran's and Ella's and Anna's - because while we are all in it together, the way we get through as individuals and as a family and in our relationships as twos and threes is so unique. I wish I could have the words in my heart and fingers to write down the full feelings and emotions. At the same time, I understand logically that the words don't contain the full meaning and import that they contain for a family that hasn't been actively living the journey - the people on the sidelines, however intimately involved, don't know the full extent and can't. I can't understand the other families that we know - as the journey has some of the same pit stops and sightseeing, and while the trip may be similar it isn't identical and the destination isn't the same for all of us. (that is like the longest three sentences and run-ons and non-sentences ever!)
Anyway, all that being said; I love the way this Dad tries to explain himself and he puts into words what I think all of us parents are living/breathing/thinking/not-thinking about. The world where you kind of just have to keep to yourself. I remember when Anna was first diagnosed and I remember thinking that a lot of the parents and families were so isolated and almost, but not at all, unfriendly.
What I realize now is what Sam calls the 'tunnel'. We have to keep going down our tunnel, we keep everything we need to get through the day-to-day in sight in front of us in our tunnel. When we do that everything seems great and fine and that everyhthing is going to work out for everyone. The problem arises when you peek out of the tunnel, try to look up or below and maybe try to see to the end. That's when everything falls apart and is so incredibly overwhelming that you have to, as quickly as possible, tuck your head back down and retreat. The looking up means seeing the other friends and families and where their journeys are headed, where their journeys are ending or changing direction. That's no good. Either positively or negatively - It's kind of like Dory, "Keep swimming. Just keep swimming." If we stop we sink. That isn't good for anyone. ;) Sinking would be very bad. So, keep swimming and stay in the tunnel and hope and Pray that we can come out the other side with families and friends and finances and relationships intact.
The fact is that you have to insulate yourself (at least I do) so that I can continue on being the best Mom and Wife I can at this time - it is SO easy to cry everyday (and I usually do) not because of Anna and our situation. While I may wish that this hasn't happened to Anna - my fear and sadness aren't usually for us or for her - but for the families that are losing or have lost. The families that are faced with living the unthinkable - and there are stories and kids every day that make me cry and as Anna says, "sad tears, not happy tears." I lie, a lot, and tell her they are happy tears.
The salient points I use ever so many words to express:
Anyway, (again), here is what I've copied from Will's piece:
It is important to not get lost in that grief road trip.
It is important not to waste any time worrying about a reality that does not
exist.
If it happens I'll have forever to deal with it so you have to force your mind
not to go there.
and a more full version of the text from his post:
Grief paella
Grief is not something that I can experience while simultaneously being a good dad.
If, for example, I was an unmarried childless person I could simply dive right into grief with both feet - come to grips with it - and integrate my new reality into a new functional way of living and then move on. However, when you have a family and young children I've discovered that trying to contend with grief is much harder to do and as a result finding a new functional model for your new reality is a much longer process that can drag on for longer than you'd like. You can't exactly sit on the couch all weekend reading trashy magazines, eating bon bons, and using up tissue boxes. There is hockey and soccer and play dates and three kids who I desperately want to be happy.
I found myself trapped in a seemingly endless cycle of "grief control" as a result of all the children dying whose lives I have followed online and in the clinics. This non-stop grief is precisely why I went 'off' the neuroblastoma parent email list and why I also stopped adding any new kids to the list of kiddos I follow. Now that almost all of them are gone I very rarely am forced to take a bite of my grief paella but this weekend I was reminded of just how poisonous it is - and of all of the terrible roads it wants to take you down.
If it is one of the countless NB kids that dies - or even the family dog - the back beat to the grief that thrums like a maniacal thought pulsing through my brain is how crippling this would all be if this happened to Will.
It is important to not get lost in that grief road trip.
It is important not to waste any time worrying about a reality that does not exist.
If it happens I'll have forever to deal with it so you have to force your mind not to go there.
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