Our affairs

There's nothing to get you thinking like "getting your affairs in order."

Before Ellie was born, we had papers drawn up that would determine guardians if something happened to us, but couldn't sign them until she was born... After she was born, life got crazy and we didn't ever do anything with them. Then life really got crazy- Ellie died and we learned Max may need special care for his whole life. Now that we are expecting the twins, we really need to at least get guardianship papers done drawn up and SIGNED. Well this just opened up the flood gates and we decided just to go ahead and do our Power of Attorney, Health Directives, Will and a Special Needs Trust for Max.

The paperwork is extensive, tedious and repetitive. Our Friday night excitement last week was going over our health directives. Dave and I definitely had different takes on how detailed we wanted to be with the paperwork. Dave's responses were pretty generic but I want to be very specific on what I want in certain situations.

Generally speaking, I think I've always been more of the type of person that doesn't believe in prolonging a "life" that is sustained only by machines. I truly believe that this is an individual belief and that each situation is different, calling for a different solution... But for me, I don't want a life spent in a hospital or relying on machines. If I can't reasonably enjoy life- I don't want it.
And this is fairly obvious when you look at my responses to the questions. Many of them have DNR/ DNI written in them, as well as comfort cares. I kind of felt like an old lady filling out these forms instead of a 29 year old. It's not that I don't want any medical intervention at all, I just don't want it if it's not going to change anything. I say this, but then I think of what we put Ellie through...

At one point a doctor taking care of Ellie said, "we've through everything at her but the kitchen sink. And if I thought that would work, I'd throw that in too." Ellie had almost every type of blood product available- she almost tapped out two hospitals worth of type specific blood. She had her own intensivist. More specialists than I can probably even remember. When we made the decision to go ahead with ECMO, we were told that there was less than a 1% chance that it would save her. It was that, or nothing. She was going to die. But we could try this one last thing. I don't even really think that we discussed it. Of course we would try.
Knowing what I know now, and having the understanding of what was really going on in her body at the time, I'm not sure that I would make the same decision. ECMO never really had a chance of working. Not for what was wrong with her. And it took a terrible toll on her already damaged body. If we had decided against the ECMO, we would have had several more hours with her. Holding her. Loving her.
But who knows, maybe I would still make the same choice. Even if it's only a 1% chance, it's still a chance. And when you are making it for your previously healthy and happy perfect nine-month old, that chance is all that matters. When we woke up that morning, we had no idea what we were facing. Even so, there is no way to prepare yourself for these types of decisions.
I think that when it's a child you just try for as long as it's reasonable. But even though no parent ever wants to say that its ok to stop treatment and just provide comfort until it's time to say goodbye, sometimes that point will come. For us, that point was obvious. Painfully obvious. It's not always that obvious- with children or adults.

After working on the oncology floor in a pediatric hospital, I saw many families struggle with these decisions. I've taken several classes on the dying process and bereavement. There is no clear cut way of doing things. So I guess, as an adult, it's a "nice" thing to do for your spouse and family- you know, to tell them when they should just let you die. Really, in the end, you are at their mercy. If you don't have the ability to speak for yourself, it's out of your hands.
It's the same with the whole cremation or burial thing... For us, we already have our burial plots purchased. Not exactly something that all healthy 28 year olds purchase, but we wanted to be with Ellie. So there's that... Getting your affairs in order as a young mom is definitely a little depressing and slightly overwhelming. But I'm not afraid of dying- I don't want to leave people behind, especially children who need a Mommy, but if something catastrophic happens, it happens. So I guess we should just write it down for everyone. Plus, when you already have your burial spot picked out- why not?

So for anyone that may someday be standing by my bedside making all sorts of big decisions, remember this- unless I can reasonably enjoy my life, just let me go be with Ellie.