August 30, 2007

Hard to even think about

Schuyler at the airport
Originally uploaded by Citizen Rob.
I'm not going to set this up with a lot of commentary. I will simply say that you should go read this post, maybe the most affecting and poignant blog post I've ever read. It was written by Danielle, a med student whose stuff I've been reading for a while.

I read this last night, and then I sat up thinking about it for a long, long time. I think when you're the parent of a broken child, it's very easy to believe that you'll always be around for them, as if your special work grants you some sort of invulnerability to the shitty, horrible things that can happen in the world. I honestly can't tell you what would happen to Schuyler if something happened to Julie and or, who would take care of her and assume the life's work of fighting her monster with her.

It's a hard conversation for us, because there aren't any easy answers, no family in towns with schools even remotely prepared for someone like Schuyler. The thought of Schuyler suddenly left on her own in this world opens a dark pit in the very center of my body. I think it's something we need to figure out, though, and soon. It's easy to forget just how fast things can happen, or how cruel the world can be.


britmummybites said...

This has crossed our minds a few times. But somehow when we had these conversations it's always about being older with them in their late teens. So need to sort a will out. My husband doesn't have family and i need to have something written so that mine will never get my children. My husband had friends that i always thought would make great parents but they had words and i haven't seen them in years which is a deep shame. There's a couple of mum's on a special needs board that i would like to name as next of kin, but how on earth do i ask them, how do i strike up that type of conversation with them?
Recent happenings of an online friend ex fosterchild has seriously put me off letting my eldest have any type of independent assisted living when she gets older. (The "child" is now in intensive care due to severe burns due to someone not checking the bathwater).

Kathryn Johansen said...

You've brought up a fear that seems to run in the back of our minds, as well, Rob. There are no god parents, no young folks left in the family capable of raising our son. It's something we need to deal with soon, but not sure what to do. We have some neighbors who love him, but yeah, how do you approach them with something so huge?

misdee said...

I live in fear of this. For two years my husband hung between life and death, being supported by a electrical box which was pumping his heart. I lived in fear in case something happened to me, and I wouldnt be there to confort the children if anything happened to Peter. Lauren(middle daughter) needs just a small fight compared to what you have fought for Schuyler, but would anyone else give as much fight needed for her one bit of extra help needed (speech therepy) or would they leave her to be just a bit jumbled as they dont see it the same as me? Even when faced with peters ill health we didnt think about who would have the children if anything bad happened to me as well. Fortunatly now, peter is back on the mend after a transplant, but we still havent sorted it out. It doesnt bear thinking about. but we should do it.

but as britmummybites and kathryn say how do you even approach someone about this?

maybe I am lucky in having a very large family who take an active part in the girls lives, so it isnt so bad, i feel for people who dont have that network of support in place for whatever reason. must be so so hard.

Anonymous said...

Do it -- and do it now. Set a deadline and meet it. As hard as it is, this is one of the most important things you can do for Schuyler. I know it won't be easy, but just imagine what might happen if you don't. It can, it does happen in a split second.

Ellen said...

Okay, here comes the lawyer in me because sometimes I just can't help myself. It no longer is much of an issue for me--even my 17 year old is in college and she just needs someone to manage the money. but I have consented to be named in my sister's will as guardian of her severely autistic son. No, I likely will not handle it as well as her--but I will do as best I can and she knows that. I did not agree lightly but I'm glad we talked about it.
And no, no one is likely to do it as well as you and Julie. But not to decide and put it in a will is to let someone else--someone who does not really understand--decide. Any choice you make is likely to be infinitely better than the choice among the people the court might find. You need to start talking now to anyone you think might be suitable. Some of them might surprise you in what they are willing to do.

Cynthia said...

I'm with Anonymous. Sit down and do it now. There's never a better time.

No-one is invincible or immortal and life happens too fast.

Amy Lynn said...

What a heartbreaking story.

I agree with everyone else, of course. It's better for you and Julie to decide than for it to be left to someone else.

jennifergg said...

There's only one word that covers that for me: faith. You have to know that there are people in this world who will love Schuyler as much as you and Julie do; I think you have an inkling of it by the comments on this blog. You have to believe it enough to accept that whatever happens, Schuyler will know she is cherished, and loved.

And too, it's a very good reason to cherish every single day with her. Like a bank acount of love, that you make deposits into whenever you can, as long as you can.

Danielle said...

Thanks so much for the compliment. I have to admit, you reading my site is a bit like Jimi Hendrix watching some kid in a garage band attempt to play Purple Haze. Without all the curling irons and acid, of course.

Seriously, thanks for stopping by and you bring up an incredibly important issue. Interested to see the conversation this brings about.

Anonymous said...

You might be surprised at who is willing to step up. My brother-in-law arranged in his will for a friend to raise his three girls if worse came to worse. He had assumed that since we are childless by choice we would have refused, and that his asking would have caused hurt and awkward feelings in the family. We only learned of all this after our nieces were almost grown. When we told him we loved those girls dearly, and would have snatched them up in a second, he was shocked. So although it is a hard thing, it might be best to start talking this up sooner rather than later.

Kate said...

My daughter is 4, almost 5.

We have been discussing this issue since she was born, and yet, we still have not drawn up a will.

We now have a holographic will drawn up and notarized, and we have an appointment with a lawyer to do an "official" will as well as power of attorney for health care and "living will" health care wishes.

Thank you (and Danielle) for the sound kick in the rear that both my husband and I (career procrastinators) needed.

Niksmom said...

It is not an easy conversatio to start; sometimes it's even harder to finish. My husband and I had to sit and discuss all the family members and decided that there is no one in either family we respect to be appropriate role models for Nik. Some members are too old (both sets of grtandparents, for example). We finally decided to ask one of my dearest friends and her husband; they have a pre-teen son and lost a daughter some years ago. How could we possibly ask them to take on a child with multiple disabilities and as-yet-unknown needs? It was not easy or comfortable but it was necessary and meaningful to all of us. They are thinking it over so we still don't have someone named yet but we are hopeful.

Bottom line is that it is not a short process to get there; begin it now while there is no urgent need.

Erin said...

We were prompted into action a few years ago when I was faced with a mass that took a little too long to diagnose as benign. I can't say that finally getting to sitting in front of the lawyer was an easy process. There was a lot of thought and definitely some tears along that path.

We ended up choosing two sets of people, one as the primary choice and one as a secondary choice if the first choice couldn't/wouldn't be able to. I hope that the day never comes that my decisions have to put into place, but it did ease my mind to know that there were people who would love my kids and watch over them for me.

electric boogaloo said...

Give her to meeeeeeee.